Re: [CMLHope] Hello

[maggy...@bellsouth.net]

Beth,

Hello and good afternoon from Kentucky.  I am sorry you are going through what 
you're going through.  I've been carrying this diagnosis CML since 2007,this 
six months following a kidney transplant.  I do peritoneal dialysis at home.   
I've been on all the nib drugs and they all have failed at this point.   I am 
now taking Dicitapine (chemotherpay) in order to get my counts low enough for 
me to withstand a bone marrow transplant aka stem cell transplant.  My question 
to you is how did you friend at Moffett do with her/his stem cell transplant?  
What was that individual's diagnosis.   Anything you can share I would 
appreciate.

Thanks,
Donna


 


 From: bkbar...@aol.com bkbar...@aol.com
To: cmlhope@googlegroups.com 
Sent: Thursday, September 12, 2013 11:38 PM
Subject: Re: [CMLHope] Hello
  


Dear Susan  and all, Thanks for your kind words. I am in Chicago...my status is 
undetectable for the past 4 months. Another BCr Abl will be done at the end of 
this month and we will see then if I am still holding.  I am on sprycel at 
between 40 and 60 a day, I have had CML for 3.5 years, have been on Gleevec, 
Tasigna, Bosutinib, and Sprycel, never got to PCRU until 4 months ago60 of 
sprycel did the trick. ..my struggles have been elevated cpk, muscle weakness 
in my legs, trouble going up stairs and down, getting up from seated 
position,.., deep fatigue,. I had a robotic hysterectomy last year in March and 
woke up from it with bad bad back pain, sciatica came and has not left for 16 
months.epiderals, PT..to no avail.I had numbless and tingling in my fingers 
which they attributed to sprycel  neuropathy...weakness, sprycel...in January 
into February. I started to have significant tension in both  my upper arms, 
across my chest, weakness in my
 arms as well... etc...   long story short, this is a lesson for 
everyone..that's why I am sharing it..all my symptoms have been attributed 
to sprycel, for years.. When I went to care for my best friend at Moffit who 
went through a bone marrow transplant, I had time to really sit and be in my 
body. I emailed my doc from there and said.
I am feeling worse and worse in my body and my dosage is the same. .so when 
I come back home, lets pretend I don't have cml and I am not on sprycel..what 
might be causing these symptomslet's rule out something else going on 
entirely because that is what I believe is going on..so when I returned to 
Chicago, I went through lots of tests..and MRIs and.I have a serious 
herniation in my neck at C4 and C5 which is causing all the numbness and 
tingling, they think, in both my arms, hands and my legs...which I have 
complained about for a very long time...
I have to have surgery to remove both disks.while I was prepared to have to 
have a lumbar surgery to fix the herniation caused by how they positioned me 
during surgery..., and at last be free of sciatica..I was not prepared for this 
blowI first have to have an unexpected major surgeryI am glad to 
have a true diagnosis, and something that is fixable..hopefully surgery without 
any complicatons..it means going off sprycel...pre and post surgeries and 
hoping I can hold a remission I just got intoI will take time off in 
between surgeries to heal...it means being off of work without income for 
extended time. and figure out how to best hold my clients through all of 
this.so today, I am overwhelmed...trying to get my bearings..and 
then..second opinion neuro surgeon Monday..and we will go from there..

I am going to dance one day...do yoga, swim, lift weights... and join Judi in a 
team in training one day...walk the Grand CanyonI just need to stay 
positive and climb these next two or three mountains...healand go from 
there.. 
Prayers are always helpful...hugs.the more the better. 
Take care all of you, Beth 

-Original Message-
From: Susan Zimmerman rszim0...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Thu, Sep 12, 2013 7:14 pm
Subject: Re: [CMLHope] Hello


Dear Beth, 
 
You are truly a sweet person with your wonderful posts.  I also have a dog that 
is terrified of thunder and lightning.  She burrows under our covers on the bed 
and is fine then.  I've heard of the coats and might get her one.  I am not 
sure of your whereabouts, Beth.  And what is your status re. the CML?  Sorry, 
I've forgotten.  I pray you are in remission and doing fine. 
 
I did see something on facebook by Marcie Goodman about a trial her and family 
went through this week.  Please lift her up in your prayers.  She did not 
elaborate. 
 
All the rest of you blood brothers and sisters, may God's richest blessings be 
showered on you as you enjoy every moment that we are on this side of the 
ground!  Expect to be blessed.


18's,

Susan F. Zimmerman 
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not 

Re: [CMLHope] Ponatinib

[maggy...@bellsouth.net]

I was on Tasignia until it stopped working and had blasts so they admitted me 
to hospital and started oral ponatanib 45mg daily.    Took 2 solid months of 
hospitalization for my neutrophils to come down and platelets to go up.  Got a 
unit of blood almost every single day and sometimes two, and would get at least 
one bag platelets per day and often 3 or more.   Finally my numbers started to 
pick up and they let me go home.   I havn't felt what I would call well since 
being on this drug but at least they are saying I am in Hematological 
remission, not molecular but that is my goal.  I see my hematologist every week 
for labs to determine if I need another unit of red blood cells and usually my 
hemologin has been running around 8.5 which means I get a unit of blood.   So 
on Tuesdays i go for labs and then return on Wednesdays for blood if needed.    
This sure beats the alternative - not being well.    

On Gleevac I experienced eye bleeds. 
 


 From: Susan Zimmerman rszim0...@aol.com
To: cmlhope@googlegroups.com 
Sent: Wednesday, August 14, 2013 4:49 PM
Subject: Re: [CMLHope] Ponatinib
  


Thanks Maggy for answering.  I'd like to hear more about how you are doing on 
this drug.  Not sure which one they will put me on after determining why I am 
having brain bleed tendencies.   
Was on gleevec for 2 yrs 3 mos, on nothing now for six years because of brain 
bleeds.  Numbers were going up upon last check, tried 15 days of tasigna and 
had an indication again of brain bleeding.  Sept. 4th going to Northwestern 
Univ. again to try to determine the cause.


Blessings,

Susan F. Zimmerman 
  
-Original Message-
From: maggy...@bellsouth.net maggy...@bellsouth.net
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Aug 13, 2013 2:36 am
Subject: Re: [CMLHope] Ponatinib



  

Yes, been on this drug since around first week of June.  45 mg I believe.  Was 
hospitalized for almost two months while the drug did its thing.  
 


 From: John Barrons jl...@rogers.com
To: CML Hope cmlhope@googlegroups.com 
Sent: Monday, August 12, 2013 10:53 AM
Subject: [CMLHope] Ponatinib
 

I have had CML for almost 14 years now. I failed gleevec and sprycel and am now 
on ponatinib. Is there anybody in this group who is on this drug? 

Sent from my iPad

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Re: [CMLHope] Ponatinib

[maggy...@bellsouth.net]

Yes, been on this drug since around first week of June.  45 mg I believe.  Was 
hospitalized for almost two months while the drug did its thing. 

From: John Barrons jl...@rogers.com
To: CML Hope cmlhope@googlegroups.com 
Sent: Monday, August 12, 2013 10:53 AM
Subject: [CMLHope] Ponatinib


I have had CML for almost 14 years now. I failed gleevec and sprycel and am now 
on ponatinib. Is there anybody in this group who is on this drug? 

Sent from my iPad

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Re: [CMLHope] skin problems on tasigna

[maggy...@bellsouth.net]

experienced total body rash, most severe to scalp and to ears including ear 
canal.    I was prescribed allopurinol and the nurse practitioner recommended a 
lotion Amlactin, sold over counter at Kroger pharmacy. 
 
 





From: Suzan Collins skracml2...@yahoo.com
To: cmlhope@googlegroups.com
Sent: Mon, February 25, 2013 12:00:51 AM
Subject: Re: [CMLHope] skin problems on tasigna


look up sife effects to tisgnia  I believe it is a dide effect 
I beleive they are side effects. I recently have the sclap problem and my mouth 
stays sore all the tiem. I saw this listed under rare sode effects.
--- On Sun, 2/24/13, daniel danieleadk...@gmail.com wrote:


From: daniel danieleadk...@gmail.com
Subject: [CMLHope] skin problems on tasigna
To: cmlhope@googlegroups.com
Date: Sunday, February 24, 2013, 12:02 AM


hi all,  


i am having a lot of small red, scaly patches popping up in several areas on 
arms and behind ears. also some inflammation on one eyelid. i have had skin 
problems since starting tasigna 3 years ago (itchy scalp, slight rash), but 
this 
stuff is new and seems a bit more serious. anyone familiar with this sort of 
problem? any suggestions for treating it?


thx,
daniel-- 
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Re: [CMLHope] Tasignia Rash

[maggy...@bellsouth.net]

he stopped the tasignia to determine whether it was the tasignia that caused 
the rash and to reconsider the gleevac.   at this point we're continuing the 
tasignia






From: icandoall...@aol.com icandoall...@aol.com
To: cmlhope@googlegroups.com 
Sent: Saturday, January 14, 2012 5:46 PM
Subject: Re: [CMLHope] Tasignia Rash


Why would he stop the Tasigna?  Yes I had a terrible rash but treated it and 
kept on with the tasi.
Good luck
Jeanie3

In a message dated 1/6/2012 6:55:29 P.M. Eastern Standard Time, 
maggy...@bellsouth.net writes:


Just approximately 15 days ago was started on Tasignia and a rash occurred on 
scalp, ears, inside ears including canal, face, neck, chest, back and down 
arms.  It itched the first day and just a little on a few other days.   It 
feels raised and is visible, slightly reddened.    Anyone else experience this 
or could this be from the Ultram I take for pain? My hematologist said I'd 
more likely see a rash with Tasignia than Ultram so he stopoped the 
Tasignia to see if the rash disappears.  -- 
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[CMLHope] Tasignia Rash

[maggy...@bellsouth.net]

Just approximately 15 days ago was started on Tasignia and a rash occurred on 
scalp, ears, inside ears including canal, face, neck, chest, back and down 
arms.  It itched the first day and just a little on a few other days.   It 
feels raised and is visible, slightly reddened.    Anyone else experience this 
or could this be from the Ultram I take for pain? My hematologist said I'd 
more likely see a rash with Tasignia than Ultram so he stopoped the Tasignia to 
see if the rash disappears.  

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[CMLHope]

[maggy...@bellsouth.net]

. http://redablog.it/bayinpills.html?yfortuneid=12l3

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[CMLHope] Re:5

[maggy...@bellsouth.net]

hello! http://danikaravan.com/bayinpills.html?nefortuneid=yoxyo

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[CMLHope]

[maggy...@bellsouth.net]

hello! http://lenwrite.by.ru/abulaharx.html?iaolID=fyen4

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Re: [CMLHope] OnControl

[maggy...@bellsouth.net]

what is SKI606?




From: zippimom zippi...@earthlink.net
To: CMLHope cmlhope@googlegroups.com
Sent: Thursday, October 6, 2011 5:56 PM
Subject: [CMLHope] OnControl

I was at MDAnderson to for my six month check up. I'm on SKI-606 for 5
years now and still at zero. But the great news that I did a  training
thing for my bone marrow with videcare.  OMG it is great, no pain,
great sample.  They use a drill to get your bone marrow out.  It was
great for me because I have really strong bones and it is alway
dificult to get into my bone for the sample.  Check out the video.
Hopefully they will use drill in all the cancer centers soon

http://www.vidacare.com/OnControl/Bone-Marrow.aspx

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Re: [CMLHope] Re: Problems with Food and Gleevec

[maggy...@bellsouth.net]

Was on Sprycel and experienced shortness of air.  Hematologist stopped the 
Sprycel.   Before that was on 400mg Gleevac and it was stopped due to Eye 
bleeds, bilateral.   Now am reinitiated on Gleevac 100mg every day and all is 
well.    Barely detectable Philadelphia Chromosomes per the BCR ABL.


From: kellyelise kellyeli...@aol.com
To: CMLHope cmlhope@googlegroups.com
Sent: Friday, September 30, 2011 1:05 PM
Subject: [CMLHope] Re: Problems with Food and Gleevec

Thank you for the info on Dr. Talpaz - I had sent him an email a while
back but received no reply. My onc NP recommended Dr. Jorge Cortes at
MD Anderson in Houston - and that's where I'm going!! They called
yesterday and I have an appt. on Oct. 10. Thank God for my mother, I
could not afford to go without her. Wishing you all the best!! Those
on Sprycel, please watch for symptoms of SOB, weakness, inability to
climb stairs, weight loss (initially I had a lot of weight gain -
Aldactone and Demadex took most of the fluid off), loss of appetite,
etc. You can find the symptoms of PAH through any search engine
(Google). It is a disease that is VERY difficult to diagnose!!

Bless you all!!

Kelly

On Sep 27, 9:30 am, kellyelise kellyeli...@aol.com wrote:
 Suzieq,

 You are not whining or complaining!! We all have to vent sometime!
 Quite frankly, I am grateful to be off all TKIs as of now. The Sprycel
 about did me in. I don't know if you remember, but, I now have PAH
 (pulmonary arterial hypertension) as a result of the Sprycel. I
 underwent a heart cath in 1/11 and am now sporting a continuous
 infusion pump carrying Remodulin through a central venous catheter.
 Not pretty, but I feel better than I have in YEARS. I can actually
 walk around town now whereas I could barely climb 3 steps without
 help.

 My onc wants to put me on Tasigna, but I am highly resistant. I'd
 rather wait until the other 2 new drugs come out and see if I could
 try one of those. I have tried getting an appointment at MD Anderson
 with Dr. Jorge Cortes, but, so far have been unsuccessful. I REALLY
 need a CML specialistI live in Ohioany ideas anyone???  I am
 willing to travel, hopefully, before the snow flies.

 I stopped complaining, Susieq, and the PAH ramped up to the point I
 was taken by ambulance to CCF (50+ miles away from where I live). My
 onc always made me feel like I was a whiner...so, I stopped whining.
 No one else on Sprycel has had these symptoms. Well, I bet NOW
 they DO!!  He still denies that the Sprycel was the culprit even
 though my cardiologist and pulmonologist BOTH dictated in my discharge
 summaries that it WAS the causeit progressed too rapidly to be
 anything else. Also, I am on a minimal dose of the Remodulin and my
 health has dramatically improved. I just wish I could get put on a
 subcutaneous pumpbleh!  Nothing like waking up in the heart
 failure unit with no clue  so, now I'm complaining, ha ha!!

 Keep fighting, the side effects suck!!  We will all just muddle
 through and praise the fact we are still alive even though we feel
 like shit. Truthfully, I am grateful to still be alive and I wouldn't
 be if hadn't been for the Gleevec putting me in remission in the first
 place - now I am waffling between undetectable and weakly positive
 and I have been off the Sprycel since December 2010. I'll take the
 chemo and whine like a baby but still, in fact, be grateful for every
 day with my family.  :)

 Kelly

 On Sep 26, 3:38 pm, myvet...@aol.com wrote:



  Hi Suzieq,   We all here have had our good days and  our bad days.  That's
  what's so great about this  CML group.  We are all good  listeners.  greenie

  In a message dated 9/26/2011 12:12:45 P.M. Pacific Daylight Time,  

  sheila.a.wat...@gmail.com writes:

  Susan:

  Good to hear from you again.. a great big  THANK YOU!  I
  remember your struggles. I just want you to  know,  I wasn't
  complaining about mine,  cause I, too, am very  grateful for Gleevec
   the wonderful doctors that I've had since my  journey with CML began
  in Jan. 2004.  I am very thankful to still be  alive and kicking!  If
  my recent post sounded like I might be  whining or complaining, I
  didn't mean it that way.  Was just going  through a bit of a rough
  spot.  I never thought of it before,   but I think that week was also
  the time of some very emotional family drama  going on as well a close
  friend's son  his family in a serious car  accident.  A lot to digest
  in one week,  so could have set off  some of this side effect of
  Gleevec.   Thanks again, Susan, for  your uplifting post here.

  God Bless you,
  Suzieq

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Re: [CMLHope] leukemia heredity

[maggy...@bellsouth.net]

My CML occurred approximately 6 months after having received total body 
radiation.  


From: icandoall...@aol.com icandoall...@aol.com
To: cmlhope@googlegroups.com
Sent: Wednesday, August 31, 2011 5:20 PM
Subject: Re: [CMLHope] leukemia  heredity


Hi no one in my family ever had a blood disease but who knows? They don't even 
know what causes it.
Good luck,
Jeanie3

In a message dated 8/31/2011 1:34:15 P.M. Pacific Daylight Time, 
doem...@charter.net writes:
Hi Ruth,

I think there are still a lot of unknowns on whether or not there is some 
genetic component to risk for blood cancers.  I talked with a researcher a few 
years ago that was looking at families with CLL and there is some connection 
with that leukemia--CLL itself does have family clusters--but he said he had 
not seen an association with CLL and CML in the same family.  He also said he 
wasn't studying that so it could be possible.  My father had CLL as well and 
my niece died of ALL. 

I went to an LLS board meeting this week and we had a woman guest who lost all 
three of her grown children to AML in a 2 year period.  Her children were 36, 
32, and 22 and all were diagnosed and died within a 2 year span from 2004 to 
2006.  It is truly a horrible story.   She has not recovered and I wonder if 
she ever will.  She still appears to be in shock.  She said no one has come to 
her to ask for a dna sample so they could study this case--and she seemed 
angry that no one seemed interested enough in doing this research.  I 
understood her anger and frustration, but I also know that funding for 
research is limited and most researchers are too busy looking for cures and 
treatments.   There are a limited number of researchers and every topic can't 
possibly get studied immediately.  I'm sure someone will eventually figure out 
whether or not there is some genetic marker that makes families prone to blood 
cancers.  

Hope you are doing well!

Best wishes,
Dorothy

On Aug 30, 2011, at 11:48 PM, marcon wrote:

 After I read the replies from Pat Elliott and Suzie Q I
 realized I needed to clarify my reason for going to a
 geneticist. It wasn't because of the family history of
 leukemia, but because of breast cancer history. My sister
 had breast cancer.  I had the test for BRCA 1 and BRCA 2 ,
 and  the result was negative. As I recall, the geneticist
 was interested only in the medical history of my parents and
 siblings. Aunts, uncles, and cousins didn't seem to matter.
 I think I had this test about 3 yrs. ago. (About 4 years ago
 I joined The Sister Study. The study follows the sister of a
 sister who had breast cancer. It's a 10-year study, partly
 government funded. The study is a questionnaire that asks
 for medical history, and  health, exercise, and dietary
 habits. The questionnaire is updated periodically.)
 
 Re the interview on Patient Power, I'll be sure to watch it
 myself. And I will pass it along to my brother. When 1st
 diagnosed he said he didn't want to read anything about
 MGUS. Whatever the dr. told him was enough. Now, about 6
 months after dx, he is receptive to new information about
 MGUS and myeloma. 
 
 So thank you, Pat, and thank you, Suzie Q, for your help and
 understanding. My best to you,
 
 Ruth Marcon 
 
 -- 

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Re: Fwd: [CMLHope] Transplants

[maggy...@bellsouth.net]

Susan,
 
Thank you for clarifying.  Appreciate it much.   I usually just lurk and write 
little.    Best of luck to you.   
 
Maggs

From: Susan Zimmerman rszim0...@aol.com
To: CMLHope@googlegroups.com
Sent: Tuesday, July 26, 2011 10:27 PM
Subject: Fwd: [CMLHope] Transplants



Dear Maggs, 

My humblest apologies about any offense.  All this new material lately has 
really sparked my interest in reading each post, which I didn't used to do.  Of 
course I care about all transplants.  In fact, those who have had to have 
kidney transplants have obviously gone through much more than those of us with 
relatively healthy kidneys.  I was writing quickly to get out the door for 
work.  Did your kidney shut down due to the cml medicine affecting it?  Or was 
it not related?  I am only coming from the perspective of learning more from 
those who could not get their cml under control with medicine and had to resort 
to transplant.  That may be me if something doesn't change.  I was not making a 
public statement about not being concerned, but trying to clarify what Karen 
asked of me.  Sounds like I'll be being quiet for awhile.  Maggs, I truly wish 
you the best in every facet of your life and especially your health care.

18's,
Susan



-Original Message-
From: maggy...@bellsouth.net maggy...@bellsouth.net
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jul 26, 2011 12:36 pm
Subject: Re: Fwd: [CMLHope] Transplants


Susan  
 
In your email to Karen, you wrote I also was very concerned to hear about 
those who had had CML transplants, not kidney.  Not exactly sure what you mean 
by this statement but it sounds like you made a public statement that you 
aren't concerned about those of us who've had to have a kidney transplant.  
 
Maggs

From: Susan Zimmerman rszim0...@aol.com
To: CMLHope@googlegroups.com
Sent: Tuesday, July 26, 2011 4:24 PM
Subject: Fwd: [CMLHope] Transplants


Hi Karen,
Just to clarify, the first post you made did not have your signature on it.  I 
also was very concerned to hear about those who had had CML transplants, not 
kidney.  I may be a candidate down the line for a CML transplant.
Thanks for your informative letter.

18's,
Susan




-Original Message-
From: Qtk98 qt...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jul 26, 2011 12:42 pm
Subject: Re: [CMLHope] Transplants


Hi Marty,

I'm not sure why my name is showing up QTK98that's my screen name, but my 
name is Karen and that's what you can call me.  In any event, I wanted to 
answer a few questions that you put out there with regards to my response on 
transplants.  My doctor and I did talk about doing a DLI, which is a donor 
lymphocytes infusion, however my donor cells depleted so quickly that by the 
time we actually realized it, another transplant was the better chance for a 
successful graft.  However, that did not happen.  We had enough frozen stem 
cells to do another transplant, so that is what we chose to do.  That answers 
your question...i.e., bone marrow or stem cells.  Both my transplants were 
non-myloablative stem cell transplants.

One of the conditioning drugs used in my second transplant was Campath, which 
did depleat my T-cells and that was the reason for all the problems with the 
virus and pneumonia post second transplant.  I had no GVHD after my first 
transplant, which probably was another sign that things were not going to work, 
since all the doctors I talk with say that a little GVHD is good.it's the 
key to a successful graft.

I did not have a kidney transplant, in fact when I responded to Susan's post on 
transplants, I thought she was looking for people with CML who had transplants, 
however she wanted to see if anyone with CML had a kidney transplant.  In any 
event I am happy to say I have not had any other problems organ wise with 
this CML nightmare I've been dealing with over the last year, however the drug 
I'm on right now for the virus can cause significant problems with the kidneys, 
so I really pray that I don't encounter more problems thru this all.

It sounds like you have been thru alot, but I'm very happy to hear that your 
transplant has worked for 22+ yearsand I'm sure you will see many 
more years to come.  I will check out the CML2 group and I wish for you 18's 
also.

Karen-- 
[CMLHope]
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Re: [CMLHope] Transplants

[maggy...@bellsouth.net]

Marty
 
I read your email to qtk.  Your story is interesting.   You may be interested 
in hearing mine so here goes.  In 2007 my kidneys failed, secondary to 
polycystic kidney disease.   My transplant surgeon asked me to participate in a 
study whose purpose was to produce chimera (the donation of my brother's stem 
cells along with his kidney).    The stem cell transplant failed.  I did not 
achieve chimera.  His cells are not detectable in my body.    Approximately 6 
months following the kidney transplant I developed CML.  Approximately 2 years 
following the kidney transplant the kidney failed.  I am now seeking a second 
kidney transplant.   
 
Tomorrow I find out if I go back on Gleevac.   It was stopped following 
bilateral eye bleeds.  Sprycel was initiated then stopped following a problem 
with my lungs.   They may start me on a lower dose of Gleevac than before.
 
Thanks for listening.
Maggs

From: Martin Gartenberg wa2...@gmail.com
To: cmlhope@googlegroups.com
Sent: Monday, July 25, 2011 6:45 PM
Subject: Re: [CMLHope] Transplants


Hi (QTK98) or should I call you Karen. I am kind of confused about that. 

Anyway, I read your story and wanted to make a sugesstion to you as well as 
some comments. I read about your transplant failure and I am sorry about that. 
However, did your doctor ever suggest that you might want to try getting your 
donors Lymphocytes rather then using the frozen cells? I'm also not to clear 
about exactly what cells that remain are? Are they actual bone marrow or stem 
cells?

Was your transplant a T cell depleated transplant? If so then you also might 
want to have the T cells of your donor included in your next transplant if 
possible. Yes, I know about GVHD from having a T cell transplant but did you 
know that the chances of relapes are much less, about 30% less when the T cells 
are included.

You sort have to gamble between the GVHD and the relapes. Depending on the 
amount of GVHD you may get. You also mention about your donor and yourself 
having a 10 out of 10 HLA match, which is a very good match, and even if you do 
get a bit of GVHD your probably not going to relapes.

Let me tell you something about myself: I had CML over 22+ years ago and had a 
BMT using my sisters Bone Marrow. We were a 6 out of 6 HLA match which was at 
that time considered a perfect match. I also had total body rediation and a 
very high regimen of chemothreapy. I had to live in a small plastic bubble, 
Laminous Air Flow unit for more then seven months. That was the way it was done 
then, and there were no drugs like Gleevec or Sprycell or the rest of them at 
that time, so I had no other choice except for pushing up Daisy's. 

I did develope some GVHD, and till this day I still have a small bit of it. 
Usually in my eye lids by itching every so often just like having allergies. I 
can live with that because as of today I still remain at PCRU. 

I am sort of oppsite from you. As I understand it you had a kidney transplant 
after you were diagnosed with CML. I now have kidney failure from all of that 
radiation and chemothreapy twenty two years ago, but I am what's called a 
Chimera. This means that I was born with O+ blood type but my sister who was my 
donor was B+ now my blood type is B+ but my organs are still O+ It is like 
there are two people living in my body, but hey, I am still alive and don't 
hear any voices except when my wife calls me to dinner

Karen, why don't you also check into c...@yahoogroups.com  There are a lot of 
CML'ers there that can give you some excellent advice. I am a part of that and 
I must say some of these people are really very learned about CML.

Both this group and the CML2 group are very good with a lot of very caring 
people.

I usaally end any of my posts with the number 18. In the Hebrew language the 
number 18 means life, and it is pronounced CHI like clearing your throat.

And that is exactly what I wish for you 18's
 
Marty Gartenberg
 
Original Birthday May 21 1944
Diagnosed CML Summer of 1989
BMT May 21 1990 On my birthday
Seven months confinement in LAF Chamber
PCRU as of today, July 25 2011, 22+ years post BMT
Number 1 on Zavies Zero list
 


On Sat, Jul 23, 2011 at 9:24 AM, qt...@aol.com wrote:

Hi Susan,

I was diagnosed with CML November, 2008.  I was on Gleevec, Sprycel and 
Nilotinib, all of which decreased my numbers so much that I had to go off and 
on the meds all the time to allow my numbers to increase.  Therefore, I never 
got a response from the drugs because I was never able to be on them long 
enough to get a response.  I sought out 3 opinions before my transplant and 
was told, by all three doctors, I needed the transplant.  They found a 10 out 
of 10 match for me thru the Donor Registry and I felt, because I was in 
relatively good health otherwise, I would do the transplant.  The donor 
cells grafted 95% after the 1st transplant, however then it failed, most 
likely because my CML cells took over and rejected the donor 

Re: Fwd: [CMLHope] Transplants

[maggy...@bellsouth.net]

Susan  
 
In your email to Karen, you wrote I also was very concerned to hear about 
those who had had CML transplants, not kidney.  Not exactly sure what you mean 
by this statement but it sounds like you made a public statement that you 
aren't concerned about those of us who've had to have a kidney transplant.  
 
Maggs

From: Susan Zimmerman rszim0...@aol.com
To: CMLHope@googlegroups.com
Sent: Tuesday, July 26, 2011 4:24 PM
Subject: Fwd: [CMLHope] Transplants


Hi Karen,
Just to clarify, the first post you made did not have your signature on it.  I 
also was very concerned to hear about those who had had CML transplants, not 
kidney.  I may be a candidate down the line for a CML transplant.
Thanks for your informative letter.

18's,
Susan




-Original Message-
From: Qtk98 qt...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jul 26, 2011 12:42 pm
Subject: Re: [CMLHope] Transplants


Hi Marty,

I'm not sure why my name is showing up QTK98that's my screen name, but my 
name is Karen and that's what you can call me.  In any event, I wanted to 
answer a few questions that you put out there with regards to my response on 
transplants.  My doctor and I did talk about doing a DLI, which is a donor 
lymphocytes infusion, however my donor cells depleted so quickly that by the 
time we actually realized it, another transplant was the better chance for a 
successful graft.  However, that did not happen.  We had enough frozen stem 
cells to do another transplant, so that is what we chose to do.  That answers 
your question...i.e., bone marrow or stem cells.  Both my transplants were 
non-myloablative stem cell transplants.

One of the conditioning drugs used in my second transplant was Campath, which 
did depleat my T-cells and that was the reason for all the problems with the 
virus and pneumonia post second transplant.  I had no GVHD after my first 
transplant, which probably was another sign that things were not going to work, 
since all the doctors I talk with say that a little GVHD is good.it's the 
key to a successful graft.

I did not have a kidney transplant, in fact when I responded to Susan's post on 
transplants, I thought she was looking for people with CML who had transplants, 
however she wanted to see if anyone with CML had a kidney transplant.  In any 
event I am happy to say I have not had any other problems organ wise with 
this CML nightmare I've been dealing with over the last year, however the drug 
I'm on right now for the virus can cause significant problems with the kidneys, 
so I really pray that I don't encounter more problems thru this all.

It sounds like you have been thru alot, but I'm very happy to hear that your 
transplant has worked for 22+ yearsand I'm sure you will see many 
more years to come.  I will check out the CML2 group and I wish for you 18's 
also.

Karen-- 
[CMLHope]
A support group of http://cmlhope.com
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Re: Fwd: [CMLHope] Transplants

[maggy...@bellsouth.net]

I am seeking a kidney transplant.  Not a bone marrow transplant.  I have CML, 
as well.   Was curious if anyone out there knew of anyone else who has CML who 
also has had an organ transplant (any organ).  


From: Susan Zimmerman rszim0...@aol.com
To: CMLHope@googlegroups.com
Sent: Saturday, July 23, 2011 12:05 PM
Subject: Fwd: [CMLHope] Transplants


Thanks very much Karen and Richard for your help.  Congrats Richard on being 
off as well, and why did you (or they) set 1.0 as your time to go back on?  Any 
particular reason?  What areas also do each of you live in?  Doctors in
Tampa at Moffitt are great where I came from.  Now I'm in Indiana where it's 
not as great.

Thanks,
Susan




-Original Message-
From: Richard H richard1huff...@comcast.net
To: CMLHope cmlhope@googlegroups.com
Sent: Sat, Jul 23, 2011 9:30 am
Subject: Re: Fwd: [CMLHope] Transplants


I am also curious why you chose a transplant.  Susan:  Congratulations
on 4 Years vacation.  I am at 3 years and Feb.  My reaing was .5 and
my threashold is 1. before I have to make a decision.  My next test is
in  Aug I am quite hopeful with recent history showing an increase of
only .1 every six months.

Richard H.
dxd 2/2003
400mg Gleevec 3/2003
Undetectable 11/03
RT-PCR negative 11/04
QT-PCR .003 11/05
RBC 8.
Gleevec Vacation 11/06-6/07
Iron infusion 11/06
Transfusions 12/06-5/07
QT-PCR .7
Gleevec 1/08 -5/08
Procrit 8/08-11/08
Gleevec Vacation 7/08-Present
QT-PCR .03 4/09
QT-PCR .015 6/09
QT-PCR .021 9/09
QT-PCR .028 1/10
QT-PCR .01+ 4/10
QT-PCR .0438 10/10
QT-PCR .05 2/11
Next test Aug.



On Jul 22, 10:59 pm, Susan Zimmerman rszim0...@aol.com wrote:
 Dear Qtk98:

 I am curious why you went with a transplant two times instead of gleevec?  or 
did you use gleevec or sprycel?  I have been without gleevec for over four 
years 
now and I need testing again to see how advanced the amount of cells have 
gotten 
in my system.  Last October they were over 1.0 on the log reduction thingI 
risk a brain bleed with any CML medication, so have not gotten back on, against 
the doc's wishes.  

 Thanks for any further information.
 Susan (Indiana)



 -Original Message-
 From: Susan Zimmerman rszim0...@aol.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Fri, Jul 22, 2011 7:30 pm
 Subject: Re: [CMLHope] Transplants

 Dear Qtk98:

 I am curious why you went with a transplant two times instead of gleevec?  or 
did you use gleevec or sprycel?  I have been without gleevec for over four 
years 
now and I need testing again to see how advanced the amount of cells have 
gotten 
in my system.  Last October they were over 1.0 on the log reduction thingI 
risk a brain bleed with any CML medication, so have not gotten back on, against 
the doc's wishes.  

 Thanks for any further information.
 Susan (Indiana)

 -Original Message-
 From: Qtk98 qt...@aol.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Fri, Jul 22, 2011 3:39 pm
 Subject: Re: [CMLHope] Transplants

 I had 2 transplants for CML, both of which failed.  I had the 
 non-myloablative 
transplants, which means the conditioning chemo used before each transplant was 
not as harsh as a full blown transplant.  I have been told by a recent 2nd 
opinion doctor that I needed a full blown transplant from day one because the 
amount of CML cells in my marrow prior to transplant supported that a 
mini-transplant would not work.  I am currently seeking a 3rd transplant, which 
is probably my last shot at transplant, so I need to be sure this is done 
right. 
 I hope this information helps you and good luck with your kidney transplants.

 --
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You received this 

Re: [CMLHope] Transplants

[maggy...@bellsouth.net]

I havnt been on any medication for CML for over one year.  Gleevac was stopped 
after bilateral eye bleeds with potential for other bleeds.  I was started on 
Sprycel and it was stopped after developing a problem in the lung - pneumonia.  
BCR results monthly are 0.01ish but a recent slight increase and may begin on 
lower dose of Gleevac than initially begun before the bilateral eye bleeds.


From: Susan Zimmerman rszim0...@aol.com
To: cmlhope@googlegroups.com
Sent: Friday, July 22, 2011 11:30 PM
Subject: Re: [CMLHope] Transplants


Dear Qtk98: 

I am curious why you went with a transplant two times instead of gleevec?  or 
did you use gleevec or sprycel?  I have been without gleevec for over four 
years now and I need testing again to see how advanced the amount of cells have 
gotten in my system.  Last October they were over 1.0 on the log reduction 
thingI risk a brain bleed with any CML medication, so have not gotten back 
on, against the doc's wishes.  

Thanks for any further information.
Susan (Indiana)



-Original Message-
From: Qtk98 qt...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Jul 22, 2011 3:39 pm
Subject: Re: [CMLHope] Transplants


I had 2 transplants for CML, both of which failed.  I had the non-myloablative 
transplants, which means the conditioning chemo used before each transplant was 
not as harsh as a full blown transplant.  I have been told by a recent 2nd 
opinion doctor that I needed a full blown transplant from day one because the 
amount of CML cells in my marrow prior to transplant supported that a 
mini-transplant would not work.  I am currently seeking a 3rd transplant, which 
is probably my last shot at transplant, so I need to be sure this is done 
right.  I hope this information helps you and good luck with your kidney 
transplants.-- 
[CMLHope]
A support group of http://cmlhope.com
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Re: [CMLHope] Transplants

[maggy...@bellsouth.net]

Dear Qtk
 
thank you for the well wishes, right back atcha.
 
:)

From: Susan Zimmerman rszim0...@aol.com
To: cmlhope@googlegroups.com
Sent: Friday, July 22, 2011 11:30 PM
Subject: Re: [CMLHope] Transplants


Dear Qtk98: 

I am curious why you went with a transplant two times instead of gleevec?  or 
did you use gleevec or sprycel?  I have been without gleevec for over four 
years now and I need testing again to see how advanced the amount of cells have 
gotten in my system.  Last October they were over 1.0 on the log reduction 
thingI risk a brain bleed with any CML medication, so have not gotten back 
on, against the doc's wishes.  

Thanks for any further information.
Susan (Indiana)



-Original Message-
From: Qtk98 qt...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Jul 22, 2011 3:39 pm
Subject: Re: [CMLHope] Transplants


I had 2 transplants for CML, both of which failed.  I had the non-myloablative 
transplants, which means the conditioning chemo used before each transplant was 
not as harsh as a full blown transplant.  I have been told by a recent 2nd 
opinion doctor that I needed a full blown transplant from day one because the 
amount of CML cells in my marrow prior to transplant supported that a 
mini-transplant would not work.  I am currently seeking a 3rd transplant, which 
is probably my last shot at transplant, so I need to be sure this is done 
right.  I hope this information helps you and good luck with your kidney 
transplants.-- 
[CMLHope]
A support group of http://cmlhope.com
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[CMLHope] Transplants

[maggy...@bellsouth.net]

Hello Everyone.
 
I have CML, diagnosed in 2008, approximately 6 months following kidney 
transplant.  That kidney failed in 2010.   I am in process of being considered 
by 2 transplant programs for kidney transplant.
 
Anyone out there know anyone out there who has had a transplant with CML?   
How's things going with that if you're out there?  
 
Concerned Writer

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Re: [CMLHope] Zavie's list

[maggy...@bellsouth.net]

Sending out Prayers to Mr. Miller.


From: Peter Geary pjge...@ihug.co.nz
To: cmlhope@googlegroups.com cmlhope@googlegroups.com
Sent: Monday, May 30, 2011 3:51 AM
Subject: [CMLHope] Zavie's list


He's a cool guy zavie taught me lots in 2001 about his cml journey get well 
soon old friend the list needs tendering 


Pete G
O21 2146 026

On 30/05/2011, at 22:10, cmlhope+nore...@googlegroups.com wrote:


  Today's Topic Summary
Group: http://groups.google.com/group/cmlhope/topics
   * Prayers For Zavie Miller [9 Updates]
   * Question re; BCR-ABL results [3 Updates]
   * Digest for cmlhope@googlegroups.com - 3 Messages in 2 Topics [1 
 Update]
   * COOK BOOK [1 Update]
 Topic: Prayers For Zavie Miller
 Topic: Question re; BCR-ABL results
 Topic: Digest for cmlhope@googlegroups.com - 3 Messages in 2 Topics
 Topic: COOK BOOK-- 
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Re: [CMLHope] Eye Bleeds

[maggy...@bellsouth.net]

I was on Gleevac when one day I woke up with bilateral eye bleeds.   I was 
immediately removed from the Gleevac.   If Gleevac can make your eyes bleed 
it's 
potentially possible for it to make your brain bleeed - and to cause a 
stroke.   
I've not been on any medication for CML for over 1.5 years now.   This week I 
may be restarted on a lower dose of Gleevac per my hematologist.  We will see.





From: judy jam_92...@yahoo.com
To: cmlhope@googlegroups.com
Cc: jam_92...@yahoo.com
Sent: Sun, May 8, 2011 11:34:39 PM
Subject: Re: [CMLHope] Eye Bleeds


Hello Marcie  they scared me also but I'we had about 6 or 8 or them and they go 
right away  no need to worry  some are bigger than others but I don't think 
their a big deal except all the red.  Take care JUDY





From: Marcie margoo...@aol.com
To: cmlhope@googlegroups.com
Sent: Mon, May 9, 2011 12:38:35 AM
Subject: [CMLHope] Eye Bleeds

I've been on Gleevec since March '09, should let Zavie know that I can be his 
newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt 
but 
looks awful. Anyone have any info on what to expect?

Thanks, dear friends. Even my wonderful doctor says every now and then go 
check 
with your group.

Marcie in Baltimore
Sent from my iPhone

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Re: [CMLHope] Eye Bleeds

[maggy...@bellsouth.net]

I am not a physician but I guess there are various degrees of eye bleeds.   The 
Whites of my eyes were completely beet red when I experienced this problem.  I 
was the first my hematologist had seen with this problem, in person.  I would 
call my hematologist if i were you.  






From: sherri swanson swanson.sherri...@gmail.com
To: cmlhope@googlegroups.com
Sent: Mon, May 9, 2011 11:49:29 AM
Subject: Re: [CMLHope] Eye Bleeds

Okay, I have a silly question. Every once in awhile I wake up with my right or 
left eye in the corner all blood shot. It looks terrible and like I've been in 
a 
fight. It does not hurt or itch and usually goes away in a few days. Is this 
what you are calling  eye bleeds? 


Thanks 


On Mon, May 9, 2011 at 7:58 AM, Susan Zimmerman rszim0...@aol.com wrote:

I was on gleevec and had numerous eye bleeds until I actually did have a brain 
bleed.  This is nothing to sneeze at.  I was then removed from gleevec and have 
been off it for 4 years.  One year ago I had another stroke much worse, and am 
thankful to be here.  Going against doc's orders to try sprycel until I am out 
of cellular remission.  I pray that never happens.  Thankful for every day. 
 Take these eye bleeds seriously!  Discuss these two posts regarding brain 
bleeds with your doctors. 

Blessings,
Susan 





-Original Message-
From: maggy...@bellsouth.net maggy...@bellsouth.net
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, May 9, 2011 3:41 am
Subject: Re: [CMLHope] Eye Bleeds


I was on Gleevac when one day I woke up with bilateral eye bleeds.   I was 
immediately removed from the Gleevac.   If Gleevac can make your eyes bleed 
it's 
potentially possible for it to make your brain bleeed - and to cause a 
stroke.   
I've not been on any medication for CML for over 1.5 years now.   This week I 
may be restarted on a lower dose of Gleevac per my hematologist.  We will see.





From: judy jam_92...@yahoo.com
To: cmlhope@googlegroups.com
Cc: jam_92...@yahoo.com
Sent: Sun, May 8, 2011 11:34:39 PM
Subject: Re: [CMLHope] Eye Bleeds


Hello Marcie  they scared me also but I'we had about 6 or 8 or them and they 
go 
right away  no need to worry  some are bigger than others but I don't think 
their a big deal except all the red.  Take care JUDY





From: Marcie margoo...@aol.com
To: cmlhope@googlegroups.com
Sent: Mon, May 9, 2011 12:38:35 AM
Subject: [CMLHope] Eye Bleeds

I've been on Gleevec since March '09, should let Zavie know that I can be his 
newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt 
but 
looks awful. Anyone have any info on what to expect?

Thanks, dear friends. Even my wonderful doctor says every now and then go 
check 
with your group.

Marcie in Baltimore
Sent from my iPhone

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Re: [CMLHope] Re: HELP!

[maggy...@bellsouth.net]

My eye bleeds weren't due to high pollen count.  This was spontaneous and due 
to 
Gleevac. 





From: myvet...@aol.com myvet...@aol.com
To: cmlhope@googlegroups.com
Sent: Tue, March 22, 2011 8:13:24 AM
Subject: Re: [CMLHope] Re: HELP!

Hi Group,  Just got home from the Doctor on the eye bleed.  He said, don't 
worry 
about it that we are in an area with high pollen and I may have rubbed my bleed 
to hard without thinking about it.  If it does not get better in a few days to 
give him a call.  When ever moving to a different area their always seems to be 
something different to deal with.

greenie-- 
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Re: [CMLHope] Re: Kidney function

[maggy...@bellsouth.net]

with the eye bleeds there is some level of mild discomfort (at least for me).





From: Marcie margoo...@aol.com
To: cmlhope@googlegroups.com cmlhope@googlegroups.com
Sent: Sun, March 20, 2011 1:11:10 PM
Subject: Re: [CMLHope] Re: Kidney function

Just wondering for those who have had brain bleeds, what are the symptoms?  How 
do you know what is happening and how is a brain bleed treated?  Also, do you 
feel pain when you get an eye bleed?

Thank you all of the helpful information.

Marcie

Sent from my iPhone

On Mar 20, 2011, at 3:14 PM, Suzieq sheila.a.wat...@gmail.com wrote:

 It's one of the side affects of the Gleevec according to the paperwork
 I got from Novartis.  I circled it and showed it to my eye doctor.
 They tell me that this is not a serious thing.My husband and
 my son both have had this happen at times for no reason.  I forgot
 exactly what can trigger them according to my eye doctor.  I think he
 said stress (which is probably my husband and son's reason, LOL) as
 well as bending over and lifting stuff.  I did none of those things
 when my worst one happened..was just sitting in the chair and noticed
 some pain in the right eye. Got up and took a look,  it was bad.  I
 called my Onc/Hem doctor and they told me to go see my eye dr.  I had
 just had one two weeks prior,  so kind of scared me.  Needless to say,
 when I went to see my Onc./Hem. a week later, I still had the bloody
 eye and showed it to her,  plus the paperwork from Novartis. She told
 me to let her know if this did not clear up soon, she would send me to
 an ophthalmologist as I may have some blood vessels that need
 cauterizingbut, it cleared up on it's own and I've not had another
 one in quite a while.
 
 Suzieq
 
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Re: [CMLHope] Eye bleeds

[maggy...@bellsouth.net]

I've been off Gleevac for about 1.5 years now, due to eye bleeds.   My 
Philadelphia Chromosone indicator (level) was/is 0.07 up from 6 months ago when 
it was 0.012.  In a month they will recheck and then decide if I need to be on 
anything.





From: Victoria Reiter vkrei...@gmail.com
To: CMLHope@googlegroups.com
Sent: Sun, March 20, 2011 9:29:56 AM
Subject: [CMLHope] Eye bleeds

I've been on Gleevec for eleven years and began to have occasional eye bleeds 
about six years ago.  This lasted for a short time and then stopped.  Now I'll 
have perhaps one eye bleed a year and count myself lucky.  I was unaware that a 
few people were having bleeding in the brain and am not certain if this is from 
Gleevec or from Tasigna.  It's unspoken but true that everyone who takes a new 
medication is a test subject and that every side effect that can occur does not 
necessarily show up while a drug is in first and second stage testing.  But we 
have to give kudos to Dr. Druker for having more or less solved our problem by 
attempting to block the molecular expression of it.  His approach is being used 
on other cancers: I believe there's even a new melanoma drug that uses the same 
technique. -- 

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Re: [CMLHope] Re: Still on Gleevec Vacation

[maggy...@bellsouth.net]

I had bilateral eye bleeds from gleevac, the hematologist stopped the drug due 
to fear of potential brain bleed.    






From: Susan Zimmerman rszim0...@aol.com
To: cmlhope@googlegroups.com
Sent: Mon, November 1, 2010 7:03:48 PM
Subject: Re: [CMLHope] Re: Still on Gleevec Vacation

Dear Peg, 
I can't thank you ENOUGH for giving me this information.  I actually have three 
docs in writing to recommend me
going on sprycel as a better alternative to gleevec.  One is from Moffitt 
Cancer 
Center in Tampa, like the third best
place in the country for treating this!  Do you possibly have an article or 
anyplace I could reference telling that sprycel's big risk is brain bleeds?  
All 
three of these docs claim that there is NO history of brain bleeds.  I KNEW
that was wrong.  Last week's new doc, (the third) here in Indiana said there 
was 
no evidence of brain bleeds for
gleevec or sprycel.  I KNEW he was wrong, as I had done my homework on that 
long 
ago1% of people have brain bleeds.  I was one of those 1%.  I will 
definitely hold off for bosatinib and please keep me abreast of its release!
My most thankful heart for your information cannot be truly expressed in words! 
 I am printing this out and will do further research myself.  My new doc is 66 
yrs old and has a great reputation, but I'm thinking he might or might not have 
a consult.  I've had the other two docs consult several times together over the 
last two years.  We moved from Florida to Indiana recently and having to start 
over with a new doc againjust to monitor my counts.  At least he does the 
bcr/abl, which is a more complete test.  My last doc in Orlando only did the 
FISH.  

I will keep the faith, and thank you again and again.
Blessings,
Susan




-Original Message-
From: peg peg@live.com
To: CMLHope cmlhope@googlegroups.com
Sent: Mon, Nov 1, 2010 6:18 am
Subject: [CMLHope] Re: Still on Gleevec Vacation


Susan,  I really feel strongly that you should get a 2nd or even 3rd medical 
opinion.  I personally agree with you regarding Sprycel.  The recognized big 
risk side effect of Sprycel (besides Plural Effusion) is brain bleeds!  It 
doesn't make sense why they would risk that given your history.  Dr. Ron 
Paquette at UCLA in Calif. is a research doc that worked on the developmental 
research on Sprycel.  I have met with him regarding my Sprycel treatment and he 
is considered an expert in this field.  Perhaps your doctor might be willing to 
consult with him.  The good news, for all of us, is that a 3rd gen TKI, 
Bosutinib, is trying to get FDA approval and may be just around the corner, 
maybe as early as the first of the year.  While it is reported to generally 
have 
the same side effect risks of all the others, in clinicals the incidents of 
side 
effects were far less, while the drug was just as effective.  Wishing you the 
best! Keep the faith! Peg  On Oct 31, 7:20 am, Susan Zimmerman 
rszim0...@aol.com wrote:  I too have been on a gleevec vacation since May of 
2007...over 3 years.  My  bcr/abl test showed last week  .23.  I had a brain 
bleed in May of 2007 and then a serious stroke in April of  2010.  I am going 
against the doc's  orders to get on sprycel because I fear another stroke.  I 
have cavernous  malformations in the brain and they have  no idea why I 
stroked.  I seriously think it was exacerbated by the gleevec  the first time. 
 Also many eye bleeds  beforehand.  So I am waiting...still in cellular 
remission, praise God!   Diagnosed Feb. 2005.   Susan Zimmerman-Original 
Message-  From: sionito sion...@aol.com  To: cmlhope 
cmlhope@googlegroups.com  Sent: Tue, Oct 26, 2010 8:25 pm  Subject: Re: 
[CMLHope] Still on Gleevec Vacation   Awesome!  Sent via BlackBerry by 
ATT   -Original Message-  From: Richard H 
richard1huff...@comcast.net  Sender: cmlhope@googlegroups.com  Date: Tue, 
26 
Oct 2010 20:34:33  To: CMLHopecmlhope@googlegroups.com  Reply-To: 
cmlhope@googlegroups.com  Subject: [CMLHope] Still on Gleevec Vacation   I 
received the results of my latest RT-PCR.  Great results overall.  I  did 
increase to .0468% but we are working with a threshold of 1%  before I return 
to any medication.  I will do it all over in Feb.  2011.  Next month is my 2 ½ 
year university starting this vacation  from Gleevec.   Richard H.  dxd 
2/2003  400mg Gleevec 3/2003  Undetectable 11/03  RT-PCR negative 11/04  
QT-PCR .003 11/05  RBC 8.  Gleevec Vacation 11/06-6/07  Iron infusion 11/06 
 
Transfusions 12/06-5/07  QT-PCR .7  Gleevec 1/08 -5/08  Procrit 8/08-11/08  
Gleevec Vacation 7/08-Pressent  QT-PCR .03 4/09  QT-PCR .015 6/09  QT-PCR 
.021 9/09  QT-PCR .028 1/10  QT-PCR .01+ 4/10  QT-PCR .0468 10/10   --  
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Re: [CMLHope] Re: Pat's Update

[maggy...@bellsouth.net]

My Gleevac Side effects following 15 months treatment were eye bleeds at 15 
months.  Gleevac stopped.  Eye bleeds stopped.

--- On Tue, 3/16/10, kellyelise kellyeli...@aol.com wrote:


From: kellyelise kellyeli...@aol.com
Subject: [CMLHope] Re: Pat's Update
To: CMLHope cmlhope@googlegroups.com
Date: Tuesday, March 16, 2010, 4:08 PM


Hi Pat:

Nope, not crazy. I had the same headaches on Gleevec as well as
Sprycel - actually I think the Gleevec headaches were worse. Most
people have the bad headaches for about 2 weeks, then they start to
fade. I get headaches still, but Advil clears them up. Also, you might
start getting drippy nose, sinus problems, etc. I found loratadine
(Claritin) to be very effective and it also alleviates the headaches
(sinus headaches). My side effects aren't squat compared to Gleevec! I
no longer look like a bug-eyed bullfrog! Make sure you drink a lot of
water, avoid soda as much as possible. I drink ginger ale mixed with
juice sometimes. Unfortunately, I am addicted to Coke (the
beverage)but I limit it to 1 to 2 glasses a day, SMALL glasses. I
think it contributes to the headaches and water retention. Hang in
there!

Blessings,
Kelly

On Mar 16, 3:08 am, pat2202...@yahoo.com pat2202...@yahoo.com
wrote:
 Congratulations Kelly, I wish you continuous success. I hope the side
 effects ease up for you. I haven't been on the sprycel long and the
 only things bothering me is I am having severe headachesI have
 headaches anyway, but this is a totally different kind of headache. It
 hurts at the very top of my hairline, about half way down my
 forehead...and it's unlike any other headache, I guess that sounds
 crazy. I hope if this is a side effect...it fades away in a hurry.
 Were you and everyone else told to take it in the morning?
 Take careI'm happy for you.
 Love,Peace,Hope   Prayers, Pat

 On Mar 11, 10:19 pm, kellyelise kellyeli...@aol.com wrote:



  Hi Ya'll:

  Went to my onc today - lab work showing undetectable!!! On the Sprycel
  100 mg qd. I did tell the onc that when I feel like I'm getting
  toxic (headaches, overall malaise, extreme fatigue, no appetite,
  etc.), I stop the Sprycel for one or two days, then I resume the
  Sprycel. He told me that was ok and to just keep doing whatever I'm
  doing because it is working. I asked about log reduction and I know
  it has been explained to me a dozen times but I don't absorb things
  well.Anyway, I am way beyond that - more than a 5 log reduction.
  Yippp!!

  Thank the good Lord for Sprycel!!!
  Kelly

  On Mar 10, 5:53 pm, icandoall...@aol.com wrote:

   Hi I wish I could lower my dose--I'm on 100 mgs a day,- Hide quoted text -

 - Show quoted text -

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Re: [CMLHope] Re: Paying the donor of Bone Marrow

[maggy...@bellsouth.net]

Hello Marcie
I tolerated Gleevac for 13 months, numbers were great.   Then I experienced eye 
bleeds (severely bilateral blood shot eyes), and they were fearful the bleeds 
would occur in the brain, so, that stopped the Gleevac for me.  I have never 
heard of the Ploop you mentioned.  Good luck Marcie.   Currently I am on no 
medication for CML, am awaiting Sprycel blood levels (stopped due to severe 
shortness of air).  
Mags

--- On Sun, 2/28/10, margoo...@aol.com margoo...@aol.com wrote:


From: margoo...@aol.com margoo...@aol.com
Subject: Re: [CMLHope] Re: Paying the donor of Bone Marrow
To: cmlhope@googlegroups.com
Date: Sunday, February 28, 2010, 6:28 PM


This is Marcie from Baltimore.  I was diagnosed March '09, started Gleevec and 
other than getting used to the side effects which have not been too bad, I have 
done well.  That is until my January bloodwork when my hem/onc said that all of 
my numbers were slightly off.  They ran the blood again early Feb and he told 
me that he was very unhappy with what he was seeing.  I had reached a point 
where only 7% cancer cells were showing and now suddenly that doubled to 14%.  
I am waiting for results of new tests, one that has to do with something called 
p loop and my best understanding is that I may have developed Gleevec 
resistance.  I have had of this but it seems like most people develop that 
years into it, not 11 months.  My doc mentioned that, pending what the new 
blood results show, he may switch me to Tasigna.  Has anyone else on this site 
developed resistance that quickly and does anyone understand the meaning of the 
p loop test?  Thanks very
 much.





-Original Message-
From: Martin Gartenberg wa2...@gmail.com
To: cmlhope@googlegroups.com
Sent: Thu, Feb 25, 2010 9:19 pm
Subject: Re: [CMLHope] Re: Paying the donor of Bone Marrow


Hi Suzieq, 


Please forgive me for my error. In any event you read it and brought up some 
rather interesting questions. As you mentioned, you are doing well on Gleevec, 
and that is very good. A bone or stem cell transplant is like a life preserver 
on a sinking ship. While the ship is going down there are people trying to hang 
onto that life preserver, and no one really knows if there is another ship 
nearby to pick them out of the water. This should be the absolute last thing 
that someone wants to do especially if another therapy is working well.


I am sorry to hear about your brother and he is probably still watching over 
you. Think about it as your doing well on the Gleevec, and not needing a 
transplant. 



I still think about my donor who unfortunately has passed away, but not from 
the marrow donation. The story would take me hours to explain, so I will just 
leave it at that... 




In the time I had my transplant the 6 out of 6 Human Leukocyte Antigen (HLA) 
match was considered a perfect match. Now there is a 10 out of ten HLA. Times 
have changed and so has the ways a transplant is given. How long ago were you 
dx'ed?


Finally, as far as the immuno suppressive or anti rejection drugs, I had to 
take huge doses for the first year, then it tapered to nothing after that first 
year. So, in my case it was not a for life situation. However, since my 
kidneys are failing I will require another transplant probably within a year or 
so. Once this kidney transplant happens, I will then have to be on immuno 
suppressive drugs for the rest of my life. So, who ever said that life is fair, 
but I just roll with the punches. 


I often get asked about all that I went through, and I always answer by asking 
if every one put their troubles into a paper bag and left all of those bags in 
a pile then which one would I choose... MINE!   


GOD bless,


Marty





On Thu, Feb 25, 2010 at 2:17 PM, Suzieq sheila.a.wat...@gmail.com wrote:

Marty:

You've confused me with Russel who is the one who responded that he
had the bone marrow transplant and was looking for ways to thank his
donor.  I still have the CML and on 400mgs of Gleevec which is keeping
the CML at a very low range  I've done fine on it since being dx'ed
in Jan. '04.  As long as it is working, I have no thoughts of doing
anything different.  He is also the one who spoke of selling to the
highest bidder,  not me.  I only wrote the article I read in the
paper.  I have no qualms with the way they would like to pay.I
think it would be a commendable way of trying to generate more donors
rather than just giving the donor money free and clear.  I think this
brings up some very good issues with those of us who might one day
face this possibility of having a BMT as some of you have already had.

And, Marty, you are so right about the 1 in 4 percent range of a
sibling match.  I have two older brothers...neither of which matched
me. (smile)  I told my husband that I felt pretty sure that my perfect
match lies in the grave yard back where I'm from.  He was an older
brother who was hit by a car and killed at six years old (I wasn't
quite 1 year old 

Re: [CMLHope] Re: More Questions About Gleevec

[maggy...@bellsouth.net]

Dear Pat,
I am so sorry you are suffering like you are.  Please, if you havn't already, 
speak to a psychiatrist about the depression. 
Mags


--- On Mon, 2/22/10, pat2202...@yahoo.com pat2202...@yahoo.com wrote:


From: pat2202...@yahoo.com pat2202...@yahoo.com
Subject: [CMLHope] Re: More Questions About Gleevec
To: CMLHope cmlhope@googlegroups.com
Date: Monday, February 22, 2010, 10:10 PM


Thanks Susan for replying. My symptoms are as follows, nausea, extreme
fatigue, headaches every day, complete loss of appetite,( I force
myself to eat but if I don't eat a good amount, I am severely
nauseated and sometimes vomit my Gleevec back up) bone pain, muscle
cramps, difficulty  sleeping, low grade fevers, chills without a
fever, cold during the day, burning up at night (which is menopause I
think) hair loss, even my eyelashes, swollen eyelids and under my eyes
upon waking up, severe diarrhea, blurred vision upon waking, non-stop
acid reflux.
I am on 600mg of Gleevec that I divide in 2 doses, nexium, zantac for
acid reflux, phenergan for nausea, lomotil for diarrhea, lexapro for
depression, lortab for pain, xanax for anxiety, soma for muscle
cramps, claratin for sinus, estrace and provera for menopause, spiriva
inhaler for emphysema, and a mulivitamin. The diarrhea is damn near
impossible to control. As soon as food eats my stomach, I have to go.
Upon waking up, I cannot even make it to the bathroom. It is strictly
water and I go multiple times. It makes my stomach cramp and it burns
horribly when I use the bathroom. It has been this way since day ONE
of starting the gleevec. If I take the lomotil 2 or 3 days straight,
then I am severly constipated. If I could get rid of the acid reflux,
the diarrhea, and feeling so drained, my life would be so much better.
The doctor, and everyone I talked to in this group told me in the
beginning that the side effects would eventually go away but this has
not been the case for me. I have never reached zero on my PCR tests
and I wonder sometimes if it is not because of the diarrhea, that the
Gleevec isn't able to stay in my body long enough to do any goodI
don't know I am just speculating. I apologize if this post seems
graphic, but it is my life.
I was diagnosed 11-28-04 and have been dealing with this ever since. I
am so drained of energy and have become severely depressed. I know the
menopause and emphysema are also playing a part but something has got
to giveI feel as though I am falling apart mentally. You say you
are the Queen of Gleevec side effects...please tell me what you think.
And could you give me Dr. Druker's email addressI have consulted
with him before but have misplaced his email. Thanks.
Love,Peace,Hope  Prayers, Pat

On Feb 21, 2:19 pm, educatorsusan educatorsu...@aol.com wrote:
 Pat:

 First of all, I have been away from this site...people call me a
 lurker!  Dr. Druker has called me the Queen of All Gleevec Side
 Effects  This is my upcoming 7th year being on Gleevec---April 10th
 is the anniversary!  My quality of life was tremendously
 impacted...after 11 transfusions, Dr. Druker decided that the Gleevec
 PK level was a much overdue BUT needed test for me.  I was in a toxic
 state with Gleevec...we found this out the summer of 2005 (I think!!!)

 I have not followed your side effects and would be interested in
 knowing about yours.  I have had every side effect, rare, not-so-rare,
 common...all except the rash---I was very lucky.

 You mail email me privately or respond back here!

 Hugs,
 Susan Rosenthal

 Miami, Florida
 dx. January 8th, 2003
 Began Gleevec: 4/10/2003
 Ceased Gleevec: 4/21/2003
 Rebegan Gleevec: 4/25/2003
 Tranfusion dependent: May 2004-November 2005
 Gleevec reduced to 400mg: 8/2004
 Gleevec reduced to 300mg: 8/2005
 Gleevec reduced to 200/300 alternating days: November 7, 2006 to
 present day except now I am taking 250 every day now...
 Still undetectable 9/24/2008
 BMB/BMA PCRU!!! FISH 0% YEAH!
 Next appointment with Dr. Druker: Thursday,April 09, 2009
 Gleevec PK Level taken every 3 months monitored by Novartis and Dr.
 Druker. PCR taken every 3 months!
 PCR-in June was a weak positive but Dr. Druker felt that it was the
 same as undetectable...repeated PCR in August 2008-undetectable!!!
 (BMB/BMA PCRU!!! FISH 0% YEAH!)
 I was told that I would not need another BMB as long as my numbers
 stay where they are!!! YIP!
 3/2009 PCRU Yippee!!! Nested test not being done any longer at
 OHSU.
 6/2009 PCRU Yippee!!! Counts on Gleevec PK went up a little
 bit...not too happy about that!
 This past October, my PCR was undetectable again!!! My Gleevec PK was
 a little raised in numbers but still okay...but I am getting some side
 effects AGAIN!

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Re: [CMLHope] Re: Decline

[maggy...@bellsouth.net]

I was diagnosed with CML September 2008, 10 months following total body 
radiation which I volunteered to do (research study).  Total Body Radiation 
11/14/2010, Kidney Transplant 11/15/2010, stem cell transplant 11/16/2010.  
Purpose of BMT?   To help my body recognize my brother's cells as my own so as 
not to reject the kidney he gave me.   The bone marrow transplant failed.  My 
body killed all his stem cells but the kidney continues to keep on kicking, 
however the creatinine is increased.    Anyway, I 
was diagnosed with CML 10 months after total body radiation.   The radiation 
caused the CML, no doubt in my mind.  Of course the hematologist and transplant 
doctor deny this.   it's not like I'm going to sue them.  I signed the consent 
form knowing full well that total body radiation could cause cancer.    In my 
case it did.   So, if I had it to do over again i'd not have had the 
radiation.   hind
 sight is 20/20.  
 
Gleevac started September 2008
Gleevac stopped November 2009 due to eye bleeds
Sprycel initiated December 2009
Sprycel stopped December 2009 due to severe shortness of air
 
Am currently being prescribed no cancer medication.   Still awaiting Sprycel 
level which was sent to a research lab way back in December 2009.    
BCR-ABL 0.004 
will find out BCR ABL results this Friday as well.
 
--- On Thu, 2/18/10, Joyce Mesnarich joy...@htc.net wrote:


From: Joyce Mesnarich joy...@htc.net
Subject: Re: [CMLHope] Re: Decline
To: cmlhope@googlegroups.com
Date: Thursday, February 18, 2010, 2:45 AM


Hi,
My husband was dx in May 2009.  One of his symptoms before dx was weakness and 
fatigue.  He has had two CML doctors and both have said that CML doesn't 
necessarily produce these symptoms.  He has steadily declined.  He is 70, but 
was very active and into all his hobbies 18 months ago.  We have not been able 
to tell if it is the CML itself (very high WBC in beginning) or the TKI 
(Gleevec and now Sprycel).  I can't say I am happy to hear someone else have 
these same symptoms, but it is somewhat comforting.  He has thought maybe there 
is some underlying problem that has not been found yet.  He does have diabetes 
and atrial fibrillation.  I guess that is enough.
Best to all of you,
     Joyce in IL
On Feb 17, 2010, at 11:41 PM, kellyelise wrote:

 Thank you Marty,
 
 It isn't even just unsteadiness - it's a progressive weakness. I want
 to be stronger. I read about the Karnofsky Scale. It's the standard
 shorthand measure of a cancer patient's condition. Ninety percent or
 above means close to fully functional. 30% - bedbound; 10% moribund.
 At 50-60% a patient would most likely be in decline; still ambulatory,
 but easily fatigued and steadily losing weight. I fear that last
 description possibly describes me. How do I reverse this? Can I
 reverse this? Is it the CML or the drugs treating the disease? So many
 questionsnot many answers.
 Thanks for listening,
 Kelly
 
 On Feb 17, 2:06 pm, Martin Gartenberg wa2...@gmail.com wrote:
 --
 [CMLHope]
 A support group ofhttp://cmlhope.com
 -
 
 
 
 --[CMLHope]
 A support group of http://cmlhope.com
 -
 
 You received this message because you are subscribed to the Google Groups 
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 To post to this group, send email to CMLHope@googlegroups.com
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 cmlhope-unsubscr...@googlegroups.com
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Re: [CMLHope] We will fight one CML WARRIORS

[maggy...@bellsouth.net]

I know we aren't all living in the US of A but last I checked freedom of speech 
is a constitutional right.

--- On Sat, 2/6/10, icandoall...@aol.com icandoall...@aol.com wrote:


From: icandoall...@aol.com icandoall...@aol.com
Subject: [CMLHope] We will fight one CML WARRIORS
To: cmlhope@googlegroups.com
Date: Saturday, February 6, 2010, 12:23 PM



I wonder why someone hasn't started their own group for CML WARRIORS who wish 
to discuss how their religion has helped them through so many trials and 
tribulations. Google groups are easy to start so just a thought. Don't anyone 
unsubscribe because of the religious discussions.  These come and go, and will 
probably come up again.  Some want religious discussions and others don't.  So 
the last word is up to Rob and I think he made it clear what he wants. A 
religious person wants to share their views, and it's sometime hard to not 
discuss them when they are a such a strong part of your life.  This list has 
uplifted us and kept us going in our times of trials with this CML. So hang in 
there CML WARRIORS.  We will fight on.
Jeanie3
 

In a message dated 2/3/2010 8:30:04 P.M. Pacific Standard Time, 
ahmed.oma...@gmail.com writes:
Dear Marty, 


Thank you for this nice story, and yes I believe there are some people on this 
earth are special, they know the secret of life to take you have to give.


Anyway, because we do respect our group members who do not like to share such 
stories and discussions about our main reason of existence in this life, and 
what really make me think life worth it is to spread His true word and love, so 
I agree to continue this with you offline on private e-mails if you don't mind, 
and if anyone in our group would like to join we will be more than happy to CC 
them.



SkipD, take it easy, no one is going to unsubscribe from this forum or any 
forum, I do respect your opinion that religion is private matter for you, and 
we do not want to spoil the good thing, we thought it is so healthy to have 
balance between our souls and body strengthening to go through what we are 
facing.


Keep up the good thing, we are taking this offline, and again sorry 
for disturbing your feelings.


Dorothy and Jeanie I understand you both, and I agree to go offline if this is 
not helping anyone here in the group going through what we are fighting 
as warriors for CML.


My understanding for grouping that we all in the group have common thing, so we 
gathered to forum a one big family, and to share our life, feelings, and 
thoughts just to make our life much more value to live for.


Allah (God) bless you all,


Ahmed



On Thu, Feb 4, 2010 at 5:43 AM, Skip Duffie skipd_2...@yahoo.com wrote:




I do not with to unsubscribe from this forum or CML2 but religion is a private 
thing.
so if this presists I will go my way.  It is sad that it only takes a few to 
spoil a 
good thing..
SkipD
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Re: [CMLHope] Another New Warrior

[maggy...@bellsouth.net]

Welcome to the group.

--- On Fri, 1/15/10, Alan Constantian aconstant...@gmail.com wrote:


From: Alan Constantian aconstant...@gmail.com
Subject: [CMLHope] Another New Warrior
To: cmlhope@googlegroups.com
Date: Friday, January 15, 2010, 4:44 PM



Hello--
 
I am looking to hear from experienced CML warriors on what to expect during the 
first year of treatment in terms of quarterly BCR ABL tests and what is good 
and what is bad progress.  I know the goal is a 3 log reduction eventually, but 
I am curious to find out whether that is likely to drop to that level (if it 
does) as a linear, monotonically decreasing function or as a something that 
comes down suddenly and unexpectedly in quarter three or four.  I know everyone 
is different, I am interested in different experiences.
 
Like Ahmed, I am a recent CML warrior, with a diagnosis in November 2009 as an 
unwelcome present on my 50th Birthday.
 
My name is Alan and I'm from the US (Maryland).  Chronic stage, no symptoms, 
high white count, the bone-marrow confirmed Ph Chromosome positive.  
 
Started Gleevec 400 mg on 11/24/2009.  I have had no side effects as long as I 
eat and drink lots of water with the Gleevec.  I'm grateful for that.  I am 
hopeful that the Gleevec is as effective as it is tolerable for me.  I did 
achieve a complete hematological response before Christmas (Dec 22), so my 
white counts and platelets, which had been elevated, are now in the normal 
range.  That is also good but only the first station on this journey.  
 
I get my first quarterly BCR ABL (serum) test in February.  What would be good 
progress from those who have been on this road before me?  
 
Thanks to anyone who has been there and cares to share their story of the first 
year of treatment.
 
Alan   


On Fri, Jan 15, 2010 at 5:10 AM, cmlhope+nore...@googlegroups.com wrote:


  Today's Topic Summary
Group: http://groups.google.com/group/cmlhope/topics

New CML warrior [1 Update]
Hurting CML research and CML'ers [1 Update]
Isn't this list about CML not running down our American go... [1 Update]
Health Care [2 Updates]
 Topic: New CML warrior
icandoall...@aol.com Jan 14 03:39PM -0500 ^

 
Welcome and hang in there CML WARRIOR.
Gleevec has worked for so many people and I pray it will work for you.
Anything you need to know just ask the group.
Most of us have been fighting this CML for many years now, and we are still 
alive and kicking hehe.
Blessings,
Jeanie3


In a message dated 1/12/2010 5:05:59 P.M. Pacific Standard Time, 
myvet...@aol.com writes:
 
Hi Hamed, It's not easy to say welcome to our club, but if your going to 
be a member this by far is the best club you will find. Their so many people 
here that will give you advice if need be. Theirs a great bunch of people 
to help you. Just ask. Greenie
-Original Message-
Date: Tuesday, January 12, 2010 6:49:46 pm
To: cmlhope@googlegroups.com
From: Ahmed Omar ahmed.oma...@gmail.com
Subject: [CMLHope] New CML warrior
 
Hello,
 
 
 
At the beginning I would like to introduce myself, my name is Ahmed, I live
 
in Saudi Arabia, a new warrior in the world of chronic myeloid leukemia,
 
where I have been diagnosed for the first time in the 01/01/2009, I started
 
on Imatinib after 11 days, and the dose is 400 mg, one tablet per day.
 
 
 
I have suffered from daily of pain in the joints and bones, with feeling
 
unwell and the desire to vomit, especially because I toke the Indian 
version
 
of Gleevec, and after taking the Swiss edition of the treatment the 
symptoms
 
disappeared after 3 days gradually.
 
 
 
Thank God, the insurance company is covering my situation, Gleevec 400Mg x
 
30 tablets monthly costs here in Saudi Arabia only U.S. $ 3352.00. Until
 
now I'm still on Gleevec at the same dose as instructed by the doctor, who
 
advised me no to stop taking it because that there is no medical 
information
 
indicates the way to stop taking Gleevec.
 
 
 
Generally I ask God that we can soon eradicate all types of cancers, and 
end
 
the suffering o
 
 
 
-- 
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 Topic: Hurting CML research and CML'ers
Dorothy Emery doem...@charter.net Jan 14 02:52PM -0500 ^

 
Whoever wrote this sounds frightened and angry--so I hope this makes 
you feel a bit better. You don't seem to have a good understanding 
about how medical research works in the US but it is and has been for 
quite a while--largely a US federal government endeavor. The NIH and 
NCI with our tax dollars has funded research of over 40 Nobel prize 
winners and I don't think anyone who looks into this can deny that 
this has been a huge 

Re: [CMLHope] New CML warrior

[maggy...@bellsouth.net]

Ahmed ~ thank you for introducing yourself and it is a pleasure meeting you.   
The people in this group are supportive and kind.   Welcome.

--- On Tue, 1/12/10, Ahmed Omar ahmed.oma...@gmail.com wrote:


From: Ahmed Omar ahmed.oma...@gmail.com
Subject: [CMLHope] New CML warrior
To: cmlhope@googlegroups.com
Date: Tuesday, January 12, 2010, 7:03 PM




Hello,

At the beginning I would like to introduce myself, my name is Ahmed, I live in 
Saudi Arabia, a new warrior in the world of chronic myeloid leukemia, where I 
have been diagnosed for the first time in the 01/01/2009, I started on Imatinib 
after 11 days, and the dose is 400 mg, one tablet per day.

I have suffered from daily of pain in the joints and bones, with feeling unwell 
and the desire to vomit, especially because I toke the Indian version of 
Gleevec, and after taking the Swiss edition of the treatment the symptoms 
disappeared after 3 days gradually.


Thank God, the insurance company is covering my situation, Gleevec 400Mg x 30 
tablets monthly costs here in Saudi Arabia only U.S. $ 3352.00.  Until now I'm 
still on Gleevec at the same dose as instructed by the doctor, who advised me 
no to stop taking it because that there is no medical information indicates the 
way to stop taking Gleevec. 

Generally I ask God that we can soon eradicate all types of cancers, and end 
the suffering of everyone, and thank you all for giving me the opportunity to 
participate with you in this wonderful group.


With my sincere wishes to all,


Ahmed


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Re: [CMLHope] Re: Feeling a little selfish

[maggy...@bellsouth.net]

Hey, I am the Louisville resident! South Eastern Jefferson County here.  
::waving::

--- On Sat, 1/2/10, ted...@aol.com ted...@aol.com wrote:


From: ted...@aol.com ted...@aol.com
Subject: Re: [CMLHope] Re: Feeling a little selfish
To: cmlhope@googlegroups.com
Date: Saturday, January 2, 2010, 11:07 AM



Suzieq.we live in Prospect, Kya suburb of Louisville.  We are Ohio 
natives but have lived here off and on for about 20 years.  It is a great 
city!  We know Bardstown  well.  Have some friends that play Bluegrass music 
there.  Stay warm out there on the plains!  Have a great new year!
Tom in KY

In a message dated 1/1/2010 3:40:38 P.M. Eastern Standard Time, 
maggy...@bellsouth.net writes:




Louisville Kentucky resident here !    Born and raised in Bardstown.

--- On Fri, 1/1/10, Suzieq sheila.a.wat...@gmail.com wrote:


From: Suzieq sheila.a.wat...@gmail.com
Subject: [CMLHope] Re: Feeling a little selfish
To: CMLHope cmlhope@googlegroups.com
Date: Friday, January 1, 2010, 2:24 PM


Tom:
Where are you at in Kentucky?   I was born  raised in Western
Ky..a little place between Mayfield  Paducah.  Got married at 17,
graduated H.S.  moved away with hubby who was in the Air Force  only
go back for visits now. :)  We live in mid-Missouri now after a few
detours through Arkansas  Kansas.    I spent about two  half years
of my young teenage life in the hospital at Louisville back in late
'67 thru early '69.

Blessings  love to all this New Year of 2010,

Suzieq

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Re: [CMLHope] Re: Feeling a little selfish

[maggy...@bellsouth.net]

Louisville Kentucky resident here !    Born and raised in Bardstown.

--- On Fri, 1/1/10, Suzieq sheila.a.wat...@gmail.com wrote:


From: Suzieq sheila.a.wat...@gmail.com
Subject: [CMLHope] Re: Feeling a little selfish
To: CMLHope cmlhope@googlegroups.com
Date: Friday, January 1, 2010, 2:24 PM


Tom:
Where are you at in Kentucky?   I was born  raised in Western
Ky..a little place between Mayfield  Paducah.  Got married at 17,
graduated H.S.  moved away with hubby who was in the Air Force  only
go back for visits now. :)  We live in mid-Missouri now after a few
detours through Arkansas  Kansas.    I spent about two  half years
of my young teenage life in the hospital at Louisville back in late
'67 thru early '69.

Blessings  love to all this New Year of 2010,

Suzieq

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Re: [CMLHope] single 400 pill

[maggy...@bellsouth.net]

God bless Henry Ford for opening a hospital and God bless Ford for not taking 
the government buyout !!

--- On Thu, 12/31/09, Cindy thea7...@aol.com wrote:


From: Cindy thea7...@aol.com
Subject: [CMLHope] single 400 pill
To: CMLHope cmlhope@googlegroups.com
Date: Thursday, December 31, 2009, 11:01 AM


  Thanks Dawn, Zavie, Richard and others with help explaining the side
effects of this pill.  That is why this list is so helpful.

  Well, I am still in the clinical trial (106) at Henry Ford Hospital,
and from what I've been told, it's going to continue, perhaps for
life?  So, I kinda have to take what they give me as far as gleevec.
I did agree to stay in the trial, so my health ins. wouldn't have to
pick up the cost, plus, it will show what happens over the long run to
patients.  Henry Ford Hsp. does a wonderful job, and is always on top
of things, so I don't mind, and am very grateful for this trial.
  I'm happy to hear that I'm not the only one who noticed a change
with this new pill, although I'm sorry others find it harder to take.
Perhaps it is in the compound substances used to make the pill that
makes us ill?

  I will try cutting it in half - hope I don't forget the other
half!  :)


Cyn

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Re: [CMLHope] Single 400 Gleevec pill

[maggy...@bellsouth.net]

Gleevac 400mg always made me nauseated if I didn't have at least a semi-heavy 
meal before I took it.   

--- On Tue, 12/29/09, DAWN RODEGHIER drodegh...@sbcglobal.net wrote:


From: DAWN RODEGHIER drodegh...@sbcglobal.net
Subject: Re: [CMLHope] Single 400 Gleevec pill
To: cmlhope@googlegroups.com
Date: Tuesday, December 29, 2009, 2:07 PM







Hi Cindy, I have been on the 100 mg tabs (4 aday) since they were approved here 
in the USA.  I have a mail in plan from where I work.  So I call when I need a 
refill and one time when I needed a new script the doctors nurse ordered the 
400 tabs by mistake  but I caught it before they sent it out.  Doc didn't want 
me on those in case my counts went down and he wanted to cut back on the daily 
dosage.  He also mentioned that he had heard of whay you are talking about and 
since I was doing so well he said leave well enough alone.  Jim Rodeghier

--- On Mon, 12/28/09, Cindy thea7...@aol.com wrote:


From: Cindy thea7...@aol.com
Subject: [CMLHope] Single 400 Gleevec pill
To: CMLHope@googlegroups.com CMLHope@googlegroups.com
Date: Monday, December 28, 2009, 6:12 AM


    Henry Ford Hosp. finally ran out of the 100 dose pills, so now I  
am taking 1 - 400 pill a day, but I noticed it makes me queezy.  The 4  
pills a day never did that.  Has anyone else noticed a difference?
              Cyn

Sent from my iPhone

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Re: [CMLHope] Re: Health care

[maggy...@bellsouth.net]

SusieQ, glad I could make you smile!   What doesn't make us laugh makes us 
crazy.   I take it one day at a time and thank God every day that he's given me 
another day on this great earth.  Bless you and yours.

--- On Mon, 12/28/09, Suzieq sheila.a.wat...@gmail.com wrote:


From: Suzieq sheila.a.wat...@gmail.com
Subject: [CMLHope] Re: Health care
To: CMLHope cmlhope@googlegroups.com
Date: Monday, December 28, 2009, 2:20 PM


Thanks, Maggie,  for making me smile through all of this awful
political stuff.  There hasn't been much to smile at lately.  I for
one thought that bribery was against the law.but, it seems that it
is okay in the Senate, huh? A hundred million goes to this one if he
votes my way or thirty million goes to her for voting my way.  I
thought it was we the peoplewhere is the people in all of
this???  H?

Suzieq

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Re: [CMLHope] Health care

[maggy...@bellsouth.net]

doesn't Owebama care pay for pre-existing conditions?

--- On Thu, 12/24/09, Cindy thea7...@aol.com wrote:


From: Cindy thea7...@aol.com
Subject: [CMLHope] Health care
To: CMLHope@googlegroups.com CMLHope@googlegroups.com
Date: Thursday, December 24, 2009, 7:39 AM


   Great job Dems.  The healthcare bill passed.  This is just the  
stepping stone for what's to come.  Now we need to talk about the  
preexisting clause.  Working in automotive here in Michigan is shaky,  
so those with preexisting conditions have been worried for years.
     Maybe America will eventually catch up with the humane nations  
of the world.
               Vyn
Sent from my iPhone

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Re: [Possible Spam][CMLHope] Eye bleeds

[maggy...@bellsouth.net]

Spyrecel easy to take with or without food?  that's a huge plus.  I couldn't 
seem to eat enough befoer taking Gleevac, horrible nausea.    

--- On Sat, 12/12/09, icandoall...@aol.com icandoall...@aol.com wrote:


From: icandoall...@aol.com icandoall...@aol.com
Subject: Re: [Possible Spam][CMLHope] Eye bleeds
To: cmlhope@googlegroups.com
Date: Saturday, December 12, 2009, 11:22 AM




Good luck on your journey into the world of Sprycell-it has a lot less side 
effects than Gleevec, at least for me it does.  it's easy to take-with our 
without food.
Let us know how you feel on it-I do have headaches and nasal problems.
Blessings,
Jeanie3
 
In a message dated 12/10/2009 11:05:27 A.M. Pacific Standard Time, 
maggy...@bellsouth.net writes:




wow,  no meds for 2.5 years after gleevac stopped.    I had a fantastic 
response to the Gleevac, immediately knocked my WBC from 128,000 down to 4.7 
thousand now.   Been off Gleevac for 2 weeks and he's going to start me on 
Spyrecel which I have to pick up at the cancer center, not the pharmacy.  He 
said he didn't understand why.  Anyway, my last couple BCR-ABL was 0.000.  
Gleevac level was 1500, normal is anything above 1500 per hematologist but due 
to eye bleeds (bilateral) he said no more Gleevac.    Best of luck to you and 
may you continue to remain in cytogenic remission.

 
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RE: [Possible Spam][CMLHope] Eye bleeds

[maggy...@bellsouth.net]

wow,  no meds for 2.5 years after gleevac stopped.    I had a fantastic 
response to the Gleevac, immediately knocked my WBC from 128,000 down to 4.7 
thousand now.   Been off Gleevac for 2 weeks and he's going to start me on 
Spyrecel which I have to pick up at the cancer center, not the pharmacy.  He 
said he didn't understand why.  Anyway, my last couple BCR-ABL was 0.000.  
Gleevac level was 1500, normal is anything above 1500 per hematologist but due 
to eye bleeds (bilateral) he said no more Gleevac.    Best of luck to you and 
may you continue to remain in cytogenic remission.

--- On Wed, 12/9/09, Tony Lanoue t...@cybertrainer.biz wrote:


From: Tony Lanoue t...@cybertrainer.biz
Subject: RE: [Possible Spam][CMLHope] Eye bleeds
To: cmlhope@googlegroups.com
Date: Wednesday, December 9, 2009, 10:39 PM



2 1/2 years on nothing are your counts stable or are they slowly rising, 
because maybe the Gleevec did cure you, it has in some.Please keep us posted.
Tony



From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of 
rszim0...@aol.com
Sent: December-09-09 8:49 PM
To: CMLHope@googlegroups.com
Subject: [Possible Spam][CMLHope] Eye bleeds


Thanks for the post, Maggie May regarding eye bleeds.  I had 2 1/2 yrs on 
gleevec after diagnosis on Feb 14, 2005. Then a brain bleed with many eye 
bleeds beforehand caused me to stop.  I have been on nothing for 2 1/2 more 
years, still in cytogenetic remission, but soon will have to go back to 
something unless God intervenes, which is entirely possible.   We are choosing 
sprycel when the time comes.  Let me know how it goes for you!

Susan Zimmerman 

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Re: [CMLHope] Gleevec

[maggy...@bellsouth.net]

Started Gleevac September 2008.  Due to Eye bleeds the Gleeva was stopped 
December 2009 and started on Spyrcel.

--- On Wed, 12/9/09, dstuede...@aol.com dstuede...@aol.com wrote:


From: dstuede...@aol.com dstuede...@aol.com
Subject: [CMLHope] Gleevec
To: cmlhope@googlegroups.com
Date: Wednesday, December 9, 2009, 12:54 PM




This is Jim S. I started Gleevec 
Jan 2 2000 trial @ MDA in Houston.Therefore close to 10 years.In remission 
about 9.5 years., 
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Re: [CMLHope] Peter Pan Trying to Unsubscribe

[maggy...@bellsouth.net]

It very clearly shows any individual how to unsubscribe to this email group at 
the bottom of this email.   He needs to calm down and read.

--- On Wed, 11/25/09, Suzzie suzzienovem...@yahoo.com wrote:


From: Suzzie suzzienovem...@yahoo.com
Subject: [CMLHope] Peter Pan Trying to Unsubscribe
To: CMLHope cmlhope@googlegroups.com
Date: Wednesday, November 25, 2009, 5:20 PM


There is a person who keeps getting messages from our group on his
computer, and he has asked numerous times to get him off.
He said he would start sending some nasty messages until he gets
unsubscribed.
Has anyone who is taking care of our group messages seen this post?
I sent him a note, and asked him to please be patient, but not to do
that.
Suzzie

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Re: [CMLHope] Skip Duffie

[maggy...@bellsouth.net]

Sending a prayer out to Skip !

--- On Sat, 11/21/09, Zavie Miller zmil...@sympatico.ca wrote:


From: Zavie Miller zmil...@sympatico.ca
Subject: [CMLHope] Skip Duffie
To: c...@yahoogroups.com, CMLHope@googlegroups.com
Date: Saturday, November 21, 2009, 1:09 PM








Hi all,
 
I spoke with Skip this morning and he asked me report on how he is doing. When 
I spoke to him a couple of weeks ago he was in really bad shape. I didn’t think 
he was going to make it. Today sounded well and back to his old self.
 
At the moment he is off all medications waiting for what is left of his marrow 
to recover. It turned out that it was the Exjade side effects that were causing 
him most of his problems.
 
Here are some of his current counts. They are not in error. WBC = 0.5, 
Platelets, 4.0 and Hemoglobin=80. He is still transfusion dependent, but not as 
often as the past couple of months.
 
His case was presented to a panel doctors with Dr. David Marin from Hammersmith 
moderating the session. One of the doctor’s opinion was that this patient 
should be dead.
 
Dr. Marin has suggested that he go off all treatment to give his blood and 
marrow a chance to recover. This has helped dramatically and we will see what 
the future brings. Dr. Marin doesn’t think he should be subjected to any of the 
CML drugs.
 
Skip has had CML for over 32 years.
 
Zavie
 
 
 
Zavie Miller (age 71)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.6 log reduction Apr/08
3.6 log reduction Sep/08
3.7 log reduction Jan/09
3.8 log reduction May/09
3.8 log reduction Aug/09
e-mail: zmil...@sympatico.ca
Tel: 613-726-1117
Fax: 613-482-4801
Cell: 613-282-0204
Yahoo ID: zaviem
 
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[CMLHope] Re: GOOD NEWS

[maggy...@bellsouth.net]

Awesome ~! Wow. No more Gleevac? You go girl !
-- Original message from Sandra Wells nannyg...@bellsouth.net: -- 



Dear CML Warriors,

I am forwarding a copy of an email that I sent to my family and friends today,FYI.

My oncologist called to report my last Genoptix Report has come back NEGATIVE, which means that I AM IN TOTAL REMISSION. Praise GodFor those of you who did not know, January 2009, I was diagnosed with CML, a type of leukemia, which fortunately can be treated with oral chemo. I was put on Gleevec on January 28th and even though the side effects were pretty rough for about 8 months, they have improved to a very manageable level. Most importantly, the drug has worked, and God has truly blessed me.Thank you so much to all of you for your prayers, loving thoughts and wishes. I know your prayers made this remission possible.With Much Love,Sandy--~--~-~--~~~---~--~~[CMLHope] A support group of http://cmlhope.com - 
You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope-~--~~~~--~~--~--~---

[CMLHope] Re: The Group

[maggy...@bellsouth.net]

People are dying from H1N1, there's a shortage of the H1N1 vaccine which is ordered and provided by our government. Just a taste of healthcare changes coming our way. 
-- Original message from icandoall...@aol.com: -- 


Thanks Rob and You are so right.
Let's get back to what we do best, support each other and give our input on our CML.
I just had my visit to Moffitt, and everything is looking good. My BMA still shows signs of CML, but the doctor said it wasn't bad.
Sprycel seems to be doing the job so far.
Good luck,
Jeanie3

In a message dated 10/21/2009 10:53:41 P.M. Eastern Daylight Time, roblibe...@gmail.com writes:
This group includes people who are members of a number of religious groups including Christianity, Islam, Hinduism, Buddhism, Sikhism, Judaism, and others as well as people who are not members of or believers in any religion. It is disruptive to this group to continue a discussion of religion. 

The U.S. healthcare system does have some very serious problems which is why it is ranked 37th in the world. It is a great concern to people in this group because the costs of CML medicines are among the most expensive in the world. If and when any real change comes to the healthcare system in the United States my opinion is that it needs to expand access to everyone (especially those with serious illnesses) while at the same time allowing reasonable but not excessive profits from those providers in the healthcare business.

Let's keep in mind that this group is important to a lot in many countries. We do not need to drive anyone away with discussions that offend others and make them uncomfortable.

Rob


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[CMLHope] Re: Kelly

[maggy...@bellsouth.net]

Now I need to pipe in. Stop blaming the prior administration for all your healthcare woes.
-- Original message from kellyelise kellyeli...@aol.com: --If people would really READ Cindy's post, she is not attacking  religion. She is attacking the fact that her tax dollars are used to  promote faith based initiatives - of which she has every right to  disagree with. Christianity isn't the only religion and to promote and  believe it is the only RIGHT AND TRUE way is simply hubris. The whole  purpose of her original post and second post was in regard to  healthcare reform - NOT religion. Unfortunately, due to the previous  administration, healthcare, politics and religion have become  interdependent. What she says is true - our country profits off the  sick and dying. How pathetic is that? The fact is, we are victims of  health-related conditions. Our survival depends upon insurance  companies and being able to afford the outrageous expense of treating  our condition. Since the issue of healthcare reform is a politically  embroiled prospect, politics come into play when discussing a  situation that is very near and dear to most of us fighting for our  lives. No one is attacking Jesus. BUT, when religious factions make  political statements and manipulate the masses through propaganda,  then they should be responsible for taxation like any other  "business." I don't care if it is Muslim, Judaism, Catholicism or even  Wiccan. Jeeze..are people defensive or what?   Kelly   --~--~-~--~~~---~--~~  [CMLHope]  A support group of http://cmlhope.com  -   You received this message because you are subscribed to the Google Groups  "CMLHope" group.  To post to this group, send email to CMLHope@googlegroups.com  To unsubscribe from this group, send email to  cmlhope-unsubscr...@googlegroups.com  For more options, visit this group at http://groups.google.com/group/CMLHope  -~--~~~~--~~--~--~---  

[CMLHope] Re: Flu

[maggy...@bellsouth.net]

You have likely received numerous responses re: flu, but my recommendation is that you head for an Emergency Care Center immediately especially since this bug has moved to your chest, you risk obtaining pneumonia. 
-- Original message from kellyelise kellyeli...@aol.com: --   Hi everyone:   Been quite some time since I've posted... I have the stinking flu.  Went straight to my chest. I have a terrible cough, low-grade fever,  headache, sore throat (diminishing), and runny nose. How do you know  when to go to the doc and when to just let it run its course? I guess  I feel somewhat better, throat isn't as sore as it was but the cough  is harsh and punishing, relinquishing very little with extensive  effort.   I'm on Sprycel - BTW, the CML is back after my 8 month hiatus from  Gleevec due to side effects. In other words, I am no longer in  molecular remission. Just found that out although my doc has known  since at least May. I have the results of my last BCR-ABL although  reading it is like trying to decipher Sanskrit. Means squat to me.   Anyhoo, I emailed my NP regarding the flu and 2 days later, still no  answer. I don't want to go to my GPs office and risk infecting others  - BUT - how do you know you have the "flu" versus something more  serious - such as H1N1. I looked up the comparisons, both apply. Can I  take an antiviral agent with the Sprycel?   Any advice would be greatly appreciated. (I did get my annual flu shot  a week or 2 before getting this "flu").   Sincerely,   Kelly  --~--~-~--~~~---~--~~  [CMLHope]  A support group of http://cmlhope.com  -   You received this message because you are subscribed to the Google Groups  "CMLHope" group.  To post to this group, send email to CMLHope@googlegroups.com  To unsubscribe from this group, send email to  cmlhope-unsubscr...@googlegroups.com  For more options, visit this group at http://groups.google.com/group/CMLHope  -~--~~~~--~~--~--~---  

[CMLHope] Re: Philadelphia chromosome negative chronic myelogenous leukemia ...

[maggy...@bellsouth.net]

I've been reading along here.

I, too, have the philadephia chromosome which is synonymous with having chronic myeloid leukemia, so I thought. Hence the gleevac. My last bcr-abl was 0.8. They suspect the next one a month later will return as negative. Halleluiah ! Diagnosed September 2008. I suspect it is due to total body radiation received the preceding November 2007 preceding a bone marrow transplant (study) prior to receivingthe kidney my brotherdonated to me. The radiation made room in my bone marrow for his bone marrow. My strong immune system killed his marrow. The purpose of the study was that myimmune sytemwould see his cells as "My cells" and that my immune system would not attack the kidney. My body obviously detected his bone marrow as being an invader, but the Prograf has successfully maintained the kidney. Halleluiah again !


-- Original message from "Nadia" nadia...@earthlink.net: -- 



yes!!! ME. Ph+ Chronic Myeloid Leukemia. If I can help, just ask. I am Nadia

- Original Message - 
From: Ricardo Gadelha 
To: CMLHope@googlegroups.com 
Sent: Sunday, September 13, 2009 7:25 PM
Subject: [CMLHope] Philadelphia chromosome negative chronic myelogenous leukemia ...

I have a friend that got this kind of CML, Does someone else in this group got the same? -- Ricardo

[CMLHope] Re: Chat Reminder - Tuesday August 25, 2009 - 9:00 PM

[maggy...@bellsouth.net]

I've no idea how to navigate to CML Chat but would like to know. Can you help?
-- Original message from "Zavie Miller" zmil...@sympatico.ca: -- 






Chat Reminder - Tuesday August 25, 2009 - 9:00 PM
Photos – No Photos today – I’m away for a few days. Will post when I get back. John and Tracy will moderate.
--~--~-~--~~~---~--~~[CMLHope] A support group of http://cmlhope.com - 
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[CMLHope] Re: Washington's Health Care Plan

[maggy...@bellsouth.net]

March of 2006 my kidneys finally gave out - Polycystic Kidney Disease - and I began peritoneal dialysis at home. I'm a RN and my nephrologist told me in March of 2006 to have a shunt placed for hemodialysis, never mentioning the alternative treatment - peritoneal dialysis. Anyway, in November of 2007 my brother gave me a kidney, working very well, thank God. I began Medicare coverage March 2007. It is not my primary but the company which is my primary required I apply. So I have Medicare and don't even need it. ::Shrugs:: 

September 2008 I was diagnosed with CML (Chronic Myelogenous Leukemia), have been on Gleevac 400 daily ever since. Doing well, Labs every week per my Kidney Transplant Doctor and the CBC is shared with my hematologist. They draw the FISH etc. 
-- Original message from Catlubr tigerlv...@cox.net: --   One thing that I'm worried about is how things will change for us  (Clyde and I) after he must go on Medicare around Nov. 2011. He began  dialysis Nov 26th of 2008. We read that after 30 months, he must go on  Medicare. I'm not sure who notifies him of this. Does anyone have info  on this question? Also, I don't know what will happen with paying for  Gleevec on Medicare. His local hem/onc says that he may be going off  Gleevec soon (?) due to his being completely zero for 2 years. Can  anyone help us with info on this???   Best always to everyone on the list.   Carol Furumoto  Clyde Dx 9/99   On Jul 26, 9:16am, patrick wrote:   On Jul 25, 7:50pm, Margot wrote:  Personally, I think that we better get used to the idea of buying ourown Gleevec. If it is similar to the VA restrictions, they don't payfor anything that is not generic. Also, probably letting us eldersdie is cheaper than keeping us alive. Such is the "Change." Just athought. I don't know all the details but the VA dues supply non-generics under   some circumstances. I know this because my buddy sitting next to gets   his medical care and medications exclusively through the VA and he   takes 3 generics and 1 expensive name brand every day (not as   expensive as Gleevec of course!) And as we know without any doubt from our successes in treating HIV.   It's far CHEAPER to provide people medication to keep them healthy   than to "let them die" (in hospitals). A couple of weeks dieing in the   hospital would l pay for a lifetime or two of Gleevec. One personal suggestion; There us a lot of fear-mongering being   fomented by those who are profiting the most from the way things are.   And it appears to me that they have great sway with at least one news   channel. So my suggestion is - don't get all your input from one   channel on TV or even only from one(s) you agree with. Get a couple of   points of view and draw your own conclusions. From the nature of some of the comments that are ripe with foreboding   and light on facts I think it might be helpful to check out PBS or for   a outside point of view BBC or online, Reuters. (http://www.reuters.com   ). Patrick  --~--~-~--~~~---~--~~  [CMLHope]  A support group of http://cmlhope.com  -   You received this message because you are subscribed to the Google Groups  "CMLHope" group.  To post to this group, send email to CMLHope@googlegroups.com  To unsubscribe from this group, send email to  cmlhope-unsubscr...@googlegroups.com  For more options, visit this group at http://groups.google.com/group/CMLHope  -~--~~~~--~~--~--~---  

[CMLHope] Re: Washington's Health Care Plan

[maggy...@bellsouth.net]

The blue dog democrats aren't liking Obama-care much. There won't be a vote until September after their summer break. Plus Obama's poll numbers are declining. And there is an election coming up. He did a poor job selling this humongous program on national teevee the other night, too. All these combined spell disaster. "I think the plan is being slowed and may well be stopped not by ideology, or even by philosophy in a strict sense, but by simple American common sense". Peggy Noonan
-- Original message from Gay Bratton ghbrat...@satx.rr.com: --   It's not looking good for us. I suggest that you write your senators  and representative every day to let them know your concerns. I don't  know what else we can do, but everyone better wake us fast.  Gay   On Jul 25, 2009, at 3:01 PM, Suzieq wrote:  I am just wondering if any of you are as worried over this new "plan"   as I am becoming each day that I hear more and more coming   out..and what it is going to do to those of us with Chronic   Diseases that depend upon expensive tests and drugs to live? God Bless,   Suzieq   --~--~-~--~~~---~--~~  [CMLHope]  A support group of http://cmlhope.com  -  You received this message because you are subscribed to the Google Groups  "CMLHope" group.  To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to  cmlhope-unsubscr...@googlegroups.com  For more options, visit this group at http://groups.google.com/group/CMLHope  -~--~~~~--~~--~--~---  

[CMLHope] Re: THE NEW PROPOSED HEALTH CARE PLAN

[maggy...@bellsouth.net]

If you think healthcare costs are high now wait until the government runs it.
-- Original message from Susan Armour suzzienovem...@yahoo.com: -- 



Hi Gay: From all you have said is why I posted as I did, because that has been the topic on everyone's minds. Its a big decision, and basically I heard the same thing as far as doctors not wanting to be under the control of the Government. I am not pleased with a lot of the things that have been handled so far, so you cannot help but worry about our future with Medical Care. I think its good that everyone is putting their feelings online to share.--- On Sun, 6/14/09, Gay Bratton ghbrat...@satx.rr.com wrote:
From: Gay Bratton ghbrat...@satx.rr.comSubject: [CMLHope] Re: THE NEW PROPOSED HEALTH CARE PLANTo: CMLHope@googlegroups.comDate: Sunday, June 14, 2009, 5:53 PM
Suzzie, I hesitate to comment, because a position on this becomes so political, but I spent a night in a hospital emergency ward here in San Antonio after having some problems from a so-called "minor" surgery. That evening gave me a totally different perspective on the health care system. There were so many people waiting for care, and not nearly enough doctors and nurses (all of whom were compassionate and caring) to deal with everyone. There needs to be a better way.However, there are several things about having the government involved in the solution that scare me. #1 If there is a "government" insurance, they will set the rates, proposed treatment standards, etc. that all other insurance companies will followjust like medicare and medicaid today. The reason we can't get aransap is that medicare decided not to pay for it. Until then, my insurance was covering it, but not anymore. #2 No one has talked about where we're going to find enough doctors to see everyone or why, if government limits the money paid to doctors to keep the insurance cost down, the best and brightest of our young people would not choose other professions.Working in a government bureaucracy is NO fun. My husband is a retired government employee and I am a retired teacher of some VERY bright high school kids and I would guess that working under doctor imposed rules is the last thing they will chose. I'm afraid our doctors will become 2nd rate and our ability to see a doctor will decrease.#3 I have never seen any business that the government can run better than private enterprise. Look at the post office, education, Fanny May and Freddie Mac, welfare, and the list goes on and on. Why would we choose to let our health care decisions be placed in the hands of politicians? I don't trust any of them.These are just a few of my thoughts and I'm sure that others won't agree, but I have excellent doctors and good insurance and I know that there are those who do not. I'm afraid that "fixing" health care is going to mean "limited" health care for those who are most expensive to cover and that includes all of us with CML, as well as the elderly who cost so much more.GayOn Jun 13, 2009, at 7:41 PM, Suzzie wrote: Hi: I have not seen too much going on lately on here, but this subject might stir some people up.  I need some knowledge regarding this new Health Plan that is being worked on by Obama. It is Socialized Medicine, and I have not heard anything good about it, or how it will benefit all of us.If anybody has it already, or can explain it simply I sure would like to understand what we all have to look forward to.Personally, I am so disgusted with everything that is going on so far. --~--~-~--~~~---~--~~[CMLHope] A support group of http://cmlhope.com - 
You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope-~--~~~~--~~--~--~---

[CMLHope] Re: Gleevec Side Effects

[maggy...@bellsouth.net]

No unbearable side effects here. A little diarrhea, nothing intolerable. Am in Hematological remission after 400mg of Gleevac QD at 6 months, am now 8 months and doing fine. I, too, don't think much about this disease due to experiencing no side effects I'm unable to handle. Thank God for scientists who were able to locate the Philadelphia gene and the medication to kick it in its teeth . Hopeful here.
-- Original message from Jeff Balsam jbals...@gmail.com: --   Hi everyone! My name is jeff and though I've never posted before I  really feel like it is time to speak up. I was diagnosed with CML  about 4 months ago and I've been monitoring this site ever since.  Because of all the posts regarding Gleevec side effects, I decided to  be proactive, do some research on my own and not listen to my  oncologists advice to "just take Gleevec".   Instead I found a clinical trial where I was assured of getting  tasigna which is more powerful than Gleevec but with far fewer side  effects. I've been on tasigna for several months now and am in  hematological remission with no side effects at all! So everytime I  read about someone saying "sure Gleevec gives me horrible aide effects  but at least it's keeping me alive", I say how about trying tasigna  and maybe you can stay alive and have a great quality of life too!   Nobody knows I have CML and in fact other than remembering to take the  meds, I barely remember either. Why?no side effects, no pain, nothing  but my normal life.   So please look into this fabulous drug and maybe it will work for you  too! Good luck!   Sent from my iPhone   On Apr 16, 2009, at 5:36 AM, bikercub wrote:  I also have a hard time losing weight. I gained quite a bit when I   first started gleevec at 600 mg, the side effects were worse than they   are now and was taking 8 potassium pills a day with the dirutics for   the edema. Lost some weight when my dose was reduced to 400 mg and   now take 4 postassium pills a day. I've been the same weight pretty   much for the past 4 or 5 years, which is still too much weight! Yes, diarrhea is better than the constipation, and I guess it would be   described more like very loose stool than diarrhea. I also have gas   more than I used to. It's nice to know that I am not "faking it"! I used to be a person   who wouldn't even take an aspirin for a headache until it got really   bad and now I take so many medications/supplements/vitamins, some   because of the side effects. Thanks for all the responses! On Apr 16, 4:48 am, "Jody Capik" wrote:   one more side effect...I have a really hard time losing weight! Jody -Original Message-   From: CMLHope@googlegroups.com [mailto:cmlh...@googlegroups.com] On   Behalf Of patrickemailguard-g...@yahoo.com   Sent: Thursday, April 16, 2009 12:34 AM   To: CMLHope@googlegroups.com   Subject: [CMLHope] Re: Gleevec Side Effects almost exactly my list...   Patrick --- On Wed, 4/15/09, bikercub wrote: From: bikercub   Subject: [CMLHope] Gleevec Side Effects   To: "CMLHope"   Date: Wednesday, April 15, 2009, 11:54 PM   I was diagnosed with CML in May of 1992. I've been on   Gleevec going   on my 7th year. I was on Interferon for 10 years before   that. I   still have some effects of the Interferon, but I think most   of my side   effects are from the Gleevec and was wondering how many   others out   there have these. I know there are newer drugs available, but Gleevec seems   to be   working for me and I don't want to mess with that! I've always ran on the "warm" side, but   really feel warm all the time   now. I still have night sweats (which was one of the   things that took   me to the doctor 17 years ago!). Sometimes I think that my co-workers feel that I am taking   advantage   of having a day off in the middle of the week to   "rest". I still work   full time and have pretty much since this all started. I   also "look   healthy" so I think that may throw them off! I've read a lot of posts and read about various side   effects, but most   of those posts were a couple years backunless I'm   looking in the   wrong place Is it because most people are starting on   the newer   drugs for CML now? I'm actually wanting to know how   people who have   been on Gleevec for a few years are feeling. So here is my list of problems:   Fatigue, especially if I do too much   Day and night sweats   Muscle cramps, especially at night in the calves and arch   of foot   Frequent Diarrhea   Some edema   Nausea on rare occassions So, am I crazy? Or are you guys out there dealing with   these too? If   so, how often? Thanks- Hide quoted text - - Show quoted text -  --~--~-~--~~~---~--~~  [CMLHope]  A support group of http://cmlhope.com  -  

[CMLHope] Re: antidepressants

[maggy...@bellsouth.net]

My antidepressant is Effexor, not for depression, but to assist with the side effects of menopause. My hematologist said no Tylenol due to its ability to interfere with the Gleevac's job. He prescribed Salsilate for headaches, minor aches pains.
-- Original message from icandoall...@aol.com: -- 


Hi Daniel,
I've never taken any antidepressants, but I think we all get depressed at time with what we are coping with.
Before you take them, consider doing some natural things to help.
Go out and get some sun daily; close your eyes and let the sun bath them.
Feel the sun lifting your spirits. I do this about 10 to 15 daily.
Walk; walking is fun; just get out in the yard, or if your neighborhood is safe, walk.
Start off slow and then do more when you can.
Do some exercise everyday; try to get someone to exercise with you if possible.
Read the Psalms daily. They are very uplifting.
Look at your diet; make sure you are eating a good healthy diet full of veggies fruits good protein and etc.
Now of course, if your depression is so bad you just feel like you need something, then talk to both your primary care doctor and your onc.
Good luck,
Jeanie3

In a message dated 1/23/2009 1:22:38 P.M. Central Standard Time, danieleadk...@gmail.com writes:
hi all,anyone with experience taking gleevec and antidepressants? if so, didyour dr mention any contraindications, etc? i'm considering taking oneand am curious if there is anything i should be concerned/aware of.thanks in advance.--~--~-~--~~~---~--~~



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