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