I did not see this program, however, it is my belief that it can be inherited, if not caused by the other things they say will cause it. My daddy's sister died with a form of leukemia but it was back in the 1930's(my dad would be 90 if her were still alive) so I don't know what kind she had but
Dane, So good to hear from you. I miss hearing from you and seeing your beautiful pictures, but I do go to your photo site and look at them all over again occassionally. I hope your tests come back better and no more DLI. I'll be praying for you as I always do. Keep hanging in there.Love,
Welcome, you've found the perfect place to find valuable information, support, understanding and kindness. It is important that you learn and your friend learn all you can about the disease. Feel free to ask the group "any" questions you like, no question is too small or too big..nor is there a
Congratulations JessieI wish you continued health success.
Love, Peace, Hope Prayers, Pat
--- In CML@yahoogroups.com, jjaltura [EMAIL PROTECTED] wrote:
Hello Folks,
I had my BMT on July 2002 and just to inform everybody that I'm now
going to my 4th year as BMT survivor and still
Welcome to the group. You did get some good advice, drink lots of
water and stay active even if you feel like you are so tired you can't
put one foot in front of the other. You probably will not be able to
run 6-8 miles but do what you can, even if it is only 1 or 2 miles and
with time you will be
Hello Family FriendsI hope everyone was able to enjoy the Christmas festivities. I had a really nice Xmas. All I can tell you is that God works in mysterious ways.I'm looking forward to 2006, hoping that it will go for the better. 2005 was filled to the brim with sickness and pain, my
Hello CML FamilyI was shopping at Walmart and when I came out, there was this flier on my windshield. It says: Sheila Johnson is battling cancer and undergoing stem-cell replacement treatment and will be spending the holiday's in the hospital. She has one wish for Christmas...Christmas cards.
Merry Christmas Happy Holiday's to you and your family. Thanks for
keeping this site going for another year.
Love, Peace, Hope Prayers, Pat
--- In CML@yahoogroups.com, Rob [EMAIL PROTECTED] wrote:
We are glad to have so many new people in the group and hope all of
you have a great holiday
The answer is YES, YES! I too live in this ever changing weather of
TN. I haven't found much to really relieve it. I take Vicodin, use
lidocaine patches on my lower back and hips. Ibuprofen seems to work
better than some things, I occasionally take it with my pain meds for
a boost. The cold
I have the same problem...I don't sleep well, I seldom get in that
third stage of sleep. Ambien does not work for me either. Xanax
occassionally works but I try not to depend on them for sleep as I
don't want my body expecting one every night to go to sleep since they
are so addictive. I don't
Just wanted to update everyone on my last tests. I am negative on my FISH and PCR was .0013. I don't have to go back until February. This test the other day will be back in 2 weeks and I bet my numbers will be back up again as I didn't take my gold for several days after the loss of my mother.
Most people, 90% or more who apply for SS disabilty are turned down
the first time they apply. If so, you take this letter of denial to a
attorney that only handles disabilty cases and it is their job to
prove to the disablity judge that you are in fact disabled. BTW, you
do not have to pay the
Dearest Kathie in KY, it's Pat your neighbor and friend in TN.
Congratualtions So happy for you and your celebration of life. I
just recently had an anniversary too, and that day is much like a new
b'day and I call it my Celebration of Life Day. I understand your
feeling the value of life. It
Just wanted to update everyone on my last tests. I am negative on my FISH and PCR was .0013. I don't have to go back until February. This test the other day will be back in 2 weeks and I bet my numbers will be back up again as I didn't take my gold for several days after the loss of my mother.
Lora, Everyone responds to Gleevec differently. The most important thing is to take it daily. I've been taking the gold pill for 2 years now and it took me well over a year to reach any form of remission, I did reach remission but lost it due to the fact that I did not take my gold as
Jackie, Welcome to the group no one wants to join, as we all say. I'm
sorry to hear of your diagnosis but glad you will be getting the
Glivec, the miracle pill and have found this group for support.
Just try not to panic, and keep the faith, and take the glivec as
prescribed and I know you'll do
Dearest Teresa, Just wanted you to know how happy we are to hear from
you, sorry about your car accident, thankful you are ok. It sounds
like an unfortunate accident but God was with you. Hope to hear from
you again soon. Love, Peace, Hope Prayers, Pat
--- In CML@yahoogroups.com, [EMAIL
Congraulations Cheryl on your 5 five year anniversary. I am so happy
for you, and my heart goes out to you, and I pray that you have many,
more aniversaries. I am having my day of Celebration of Life today.
Believe me or not, I had a really nice day, I wasn't sick or in any
pain,the day was
Greetings My Family Friends
It's Monday, November 28, 2005, 12:28am and I want you all to share in
my celebration of life. Two years ago today I was diagnosed with CML.
This is a glorious day and celebration of life for me. By the grace of
God a doctor named Dr. Brian Druker was given the talent
Firebug, it was my experience that I was put on hydrea when first
diagnosed. I took this for maybe 3 weeks, only until I could get some
assistance getting the Gleevec. My WBC was normal within a few days or
1 week of taking the hydrea. Has your father been told about Gleevec
yet? Was he seen by a
Thank you for your comforting words. Time heals all wounds but
sometimes we are left with scars forever.
Love, Peace, Hope Prayers, Pat
P.S. My dad used to say this very same saying as your dad.
--- In CML@yahoogroups.com, S. Folle [EMAIL PROTECTED] wrote:
Pat,
I know this Thanksgiving and
Susan, so glad someone gave instructions on how to view. Really
enjoyed the segement and glad to see a news story about cml. Thank you
for putting yourself and fellow cmler's in the spotlight.
Love, Peace, Hope Prayers, Pat
--- In CML@yahoogroups.com, kingsusan2002 [EMAIL PROTECTED] wrote:
Hi
This medicare drug plan is the biggest mess I have ever seen. I am not
presently affected by it but my husband is. My Jim is a smart, smart
man but even he is having trouble with this. The only plan he could
find to cover his meds, it is doubtful we can afford it. In May 2006,
I will be eligible
him, hug him and pray with him, because he needs it. I
hate it, I need someone who is stronger then me, but this
situation has to make me be stronger.
Have a nice day,
Always in prayers,
Livia
Patricia [EMAIL PROTECTED] wrote:
It is with much sorrow, pain and shock
him, hug him and pray with him, because he needs it. I
hate it, I need someone who is stronger then me, but this
situation has to make me be stronger.
Have a nice day,
Always in prayers,
Livia
Patricia [EMAIL PROTECTED] wrote:
It is with much sorrow, pain and shock
It is with much sorrow, pain and shock that I must tell you, my 83 yr
old mother passed away tonight at appr. 10:15pm. I have been up all
night and it is 6am and I muust be at the funeral home at 9:30. I've
also got to contact jail officials early as posssible so that they
might let my son come
I was forced to leave behind,
the old and familiar ways.
Sometimes it's not easy.
Uncertainty rules my days.
I can do a lot of things,
but do you know what I find?
Almost all of my can do
is only in my mind.
Why do I even bother
bucking heads with the wind?
Maybe that's all I can do
just keep
Alicia, I hate to inform you but whatever doctor told you this is full of s**t. You need a cml specialist, someone who is expereinced in cml. I've been taking vicrophen since my diagnosis. I don't have to take 3 a day as prescribed most days, and some days I don't take any at all but I do have
I just want to share this with you, maybe someone else has already.
CMLsupport.com has lots of info. I got me a notebook and it is devoted
to everything CML. I wrote down definitions of words such as BMA, BMB,
fish, etc. I also get a copy of my tests which include PCR, WBC, RBC,
etc. I also wrote
For those of you finding yourself not able to continue to work, you
are not alone. I didn't work a day after being told I have CML. In
hindsight, my job performance sucked prior to diagnosis and I started
missing a lot of days. It was all I could do to get through the day. I
knew I had something
I'd be more than happy to help you Kelly. Will send private email,
hope that is ok. As far as nutrition goes, I'm sorry I can't help you
there. I do not have an appetite at all and I do not eat right. Maybe
someone else can advise you in this area.
Love, Peace, Hope Prayers, Pat
--- In
My Gleevec prescription is $6,000 a month. I am on 600mg. I could not
pay this out of pocket. Thank God, Bush did not get his 52 million
something budget cut.
Love, Peace, Hope Prayers, Pat
--- In CML@yahoogroups.com, [EMAIL PROTECTED] wrote:
Hi all,
Blessings today.
My Gleevec costs over
[EMAIL PROTECTED] wrote:
My question to you is how do you get the Gleevec while on
Disability? My insurance through work pays for my RX so If I went
on disability I would lose my insurance. I figure I have to work
till I die!
Terri
--- In CML@yahoogroups.com, Patricia [EMAIL
Greetings Family and Friends,Just wanted everyone to know I'm still kickin' but not near as high as I once was. I'm struggling with the nicotine addiction STILL. After being told I have emphysema and being so scared, even more scared than when I was told I have CML, I feel more pressure, more
Absolutely NOTHING to some folks! Most of us have many other issues
besides the CML going on in our lives, and I have always been welcomed
by this group to vent when I felt like it. I am at the moment in great
risk of losing my insurance due to the actions of the president.
Pardon me if I have
--- In CML@yahoogroups.com, "katsietoo_99" [EMAIL PROTECTED] wrote: Hi! I am new to the group. I was diagnosed with CML about three years ago, and am now taking Gleevec. Prior to this diagnosis, I was diagnosed with fibromyalgia, chronic fatigue, and a few other disorders. All of which,
--- In CML@yahoogroups.com, [EMAIL PROTECTED] wrote:
Dear Pat,
My name is Doris. I to have copd in fact I was DX with copd
11/2
years before i was DX with leukemia. I really do understand how you
feel. I
started smoking when I was 13 and didn't quit until i was 47. My
lung Doctor
Rob the only thing I have found are breathing treatments, inhalers,
steroids...and I'm not going the steroid route...crazy enough now with
enough problems already! HA! If you know something I don't, please
email me, Thanks. Love, Peace, Hope Prayers, Pat
Yahoo!
I'm writing this in response to a couple of posts on the group site
and I also recieved a couple private emails thanking me for my honesty
in describing what the Gleevec has done to me...and continues to do to
me. I'm truly thankful for the Gleevec because I know I wouldn't be
here without it, but
Hi Kelly, so regret to hear you have CML, but so glad you have found
this support group. We all have been through the shock, the fear, the
desire to learn all we can. I am also from TN and I am being treated
by a CML specialist at Vanderbilt. If you will read my previous post
titled Follow Your
Hope you are blessed with many, many more.
Love, Peace, Hope Prayers, Pat Reynolds
Yahoo! Groups Sponsor ~--
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Hello, Miss I Ain't Finished Yet, by the way I love your
phiolosphy...thank you so much for the kind words and prayers. Glad to
hear you got to see your son. His experience touched my heart but I am
so happy to hear he got his second chance. I believe that all things
happen for a reason, and
--- In CML@yahoogroups.com, zippimom [EMAIL PROTECTED] wrote:
Are you just feeling tired or are you blood counts off? I take procrit
but I have been off of the Gleevac over 6 weeks now and I'm still
tired. Dr. O'Brien at MDAnderson thinks that I'm still tired do the
kidney damage the
--- In CML@yahoogroups.com, Richard Schempp [EMAIL PROTECTED]
wrote:
--- In CML@yahoogroups.com, S. Folle [EMAIL PROTECTED] wrote:
RICHARD...
The only thing my daughter is allowed to take for pain is
Ibuprophen, which does diddly nothing really. She also takes
Zofran
(a MIRACLE drug for
--- In CML@yahoogroups.com, bheathcote201 [EMAIL PROTECTED] wrote:
Hi all. Thought I'd give you all a quick update. I am getting
ready
to head to MDACC next week in Houston to start the stem cell
harvest
process.Looks like I have shingles AGAIN - this time in my
right
arm.
Just wanted to comment on the pain meds. I take vicoprofen which is
hydrocodone and ibuprofen. They come only in 7.5 mgs. I specifically
asked my doctor for them after reading about them on the internet. I
go to a CML specialist and he is now writing my script as my primary
care doctor can no
Hello to all my CML Family...
Just wanted to let everyone know I am feeling much better. My
depression is slowly fading away thanks to an increase in my lexapro
and therapy. With everything else going on in my life, my son going to
jail nearly did me in. I've been having panic attacks for quite
I wanted to email Nancy, bless her heart and I will but she said she
would not have internet access for some time. Bob and Nancy Wilhelm
are two of the most extradionary people I have ever been touched by in
my 43 years. Bob has been through so much and Nancy has never waivered
from his side. In
Just wanted to drop a line to say forgive me if it sounded as if I
were complaining or whining in my previous post, it was not my
intentions. When I explain to you what is going on in my life...I am
not meaning it as complaint...just stating facts...my journey. Some of
the physical things I go
It's like joy after sorrow
People being friends after being enemies...
Rainbows after a drenching rain...
A wound healed
Sunsets on quiet evenings after hot, nosiy days...
Paralyzed, injured limbs learning to grow..strong and useful again..
Forgiveness after
I just want to thank Jeanie, Rob, Brenda Morelli, Barb Neddo and so
many others in my CML family for your concern and support. It is so
comforting to know others care and reach out to help. I am some better
mentally but the bronchitis and sinusitis still have a firm grip on
me. My sister-in-law
Just wanted to say hello to all my fellow CML family. I haven't posted
in a while. I do read all posts but must admit I am even behind on
that at the moment. The last time I wrote, I explained how I have been
trying to overcome a severe bout of depression...I am some better, but
due to personal
--- In CML@yahoogroups.com, pennyam1 [EMAIL PROTECTED] wrote:
Have any of you had the experience where you began on 400 mg then 600
mg gleevec and not had them work and then been put on 800 mg and had
that finally put you in remission? My son was on 400mg for 2 years
and all of a sudden
to you ,
Char :) :) :)
Patricia [EMAIL PROTECTED] wrote:
Char, I just wanted to share my experience. I was dx'd in Nov. 2003.
For much of the next 6 to 8 months, my PCR numbers were up and down.
The transplant
Char, I just wanted to share my experience. I was dx'd in Nov. 2003.
For much of the next 6 to 8 months, my PCR numbers were up and down.
The transplant doctor I was seeing at that time kept telling me I was
not responding well to the Gleevec, and said he thought I was building
up a resistance to
Thanks to all who responded. It is giving me great concern but my
primary physician shrugged it off as being a side effect of the
leukemia. I have searched and this is neither a side effect of
leukemia or Gleevec. I went back to look through my medical records,
as I told everyone previously, some
--- In CML@yahoogroups.com, Suzan Collins [EMAIL PROTECTED] wrote:
Suzan, I have emailed you in the past to tell you of my experience
with Vanderbilt. I looked on Vandy's website for your doctor and if
you have a female doctor, she is primarily a transplant doctor. I also
saw a doctor there for
There is an email I sent you but I hit reply and it went under the
topic heading of Increased Heart Rate. Pat
Yahoo! Groups Sponsor ~--
In low income neighborhoods, 84% do not own computers.
At Network for Good, help bridge the Digital Divide!
A friend of mine, Heidi is beginning her transplant journey, chemo has
begun...transplant day is April 6th. Please send love, support and
prayers to her caringbridge site: www2.caringbridge.org/ca/heidi
Thanks, Love, Peace, Hope Prayers, Pat
Yahoo! Groups Sponsor
In regard to having night sweats, I had these prior to being diagnosed
but after being on Gleevec for maybe 3 months, I stopped having them.
I think night sweats is a symptom of leukemia/CML and not the Gleevec.
I remember my doctor asking me if I was experiencing any when I first
got diagnosed
--- In CML@yahoogroups.com, hottuna_au [EMAIL PROTECTED] wrote:
Hi Guys,
just thought I would share my latest results with everyone.
Dx February 2004
9 months ago 7.5% cyto/400mg IM
6 months ago 2.5% cyto/400mg IM
3 months ago 5.0% cyto/600mg IM
Now 0.0% cyto/600mg IM
--- In CML@yahoogroups.com, Rob [EMAIL PROTECTED] wrote:
I am posting this not to start further discussion but because it is
important that this be said.
It has come to my attention that some statements have been made by
the owners of the new group that claim that they do not censor others.
Hello to Everyone,
I have recently as of Feb. 2005 been diagnosed with CML. One week on Gleevac. I am a mother of two active boys and Doctor of Chiropractic. Not me I am healthy... I have been told for many years to take care of myself, that others are always taking and I am always giving.
I am so sorry and so shocked to hear of her passing. She contributed
so much to this group, she always posted information she thought would
be helpful to us all. The last time she posted to the group was Dec.
18th. If anyone can find out any information about the cause of her
death please let me
I made a miss type...Sandra last posted Dec 8th.
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Just wanted to wish everyone a Merry Christmas and to thank you all
for being here for me this past year. I have met some really kind
people here and I don't know what I would have done without you all.
I'm so happy for those of you are doing well, and I pray for those of
us who aren't doing so
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