Hi Alan
I am a 64 year old grandma from Wisconsin. I was diagnosed in 11-05. I was
started on Gleevec and did well but was one of the very few who had liver
problems because of the Gleevec. I went into liver function failure.
Fortuantely the liver is a remarkable organ that regenerates and heals. I was
switched to sprycel and it took awhile to find the dosage that I could
tolerate. I have now been on sprycel 20mg twice a day for almost 3 years and
have been pcru for over 2 years. I have very few side effects to the sprycel.
As to what to expect from the first year, we all seem to be different depending
upon our onocologist and their practices. During the first year, I saw my ono
at least once a week for blood work for 6 months. Then it started to decrease,
and now I see him only every 3 months for blood workups. He does the pcr test
every three months.. I have had 3 bone marrow taps but he doesn't see any in
the future and the pcr test is so accurate. We are lucky to be at this stage
in the researce for a cure for cml. I feel we are on the edge of eradicating
this monster. For awhile I was consumed with the disease and that is all I
could focus on but life goes on and soon thing will get back to almost normal.
Best of Luck to you.
[email protected]
----- Original Message -----
From: Alan Constantian
To: [email protected]
Sent: Friday, January 15, 2010 3:44 PM
Subject: [CMLHope] Another New Warrior
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, <[email protected]> wrote:
Today's Topic Summary
Group: http://groups.google.com/group/cmlhope/topics
a.. New CML warrior [1 Update]
b.. Hurting CML research and CML'ers [1 Update]
c.. Isn't this list about CML not running down our American go... [1
Update]
d.. Health Care [2 Updates]
Topic: New CML warrior
[email protected] 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,
Jeanie<3
In a message dated 1/12/2010 5:05:59 P.M. Pacific Standard Time,
[email protected] 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: [email protected]
From: "Ahmed Omar" <[email protected]>
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 <[email protected]> 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 success. Those of us with CML should be grateful
for all the tax dollars that went into the basic research that
eventually led to the Gleevec. Research is also done with donated
dollars and drug company dollars--but the largest part of research
dollars has been tax dollars. I'm the advocacy leader in Western
North Carolina for the Leukemia & Lymphoma Society and my
responsibility in this capacity has been to lobby in Washington for
more & continued federal funding for research for blood cancers. The
LLS funds a lot of research but the amount spent by the LLS is a drop
in the bucket compared to the amount contributed by tax dollars. We
would not be where we are today (in my case alive) without the basic
research done with our tax dollars. This has added years of life for
many many people--including almost everyone with a CML diagnosis. So
when you get all worked up about something like this--stop and do some
research first. You don't need to worry that research will be
negatively impacted. It doesn't actually have much, if anything, to
do with the health care legislation--but the US government has been
doing a great job of this for many years and there is no reason to
believe it won't continue. The only threat to this funding has been a
conservative ideology which wants the private sector to do
everything. The problem is the private sector doesn't do basic
research as they are motivated by short term gain and can't wait
afford to pay for research that may or may not pay off within a few
years. We would need to wait for a very long time if we were to
insist that only private donations and corporate research were used.
We certainly wouldn't have Gleevec yet.
Dorothy
On Dec 29, 2009, at 7:09 AM, jhlane wrote:
Topic: Isn't this list about CML not running down our American go...
[email protected] Jan 14 02:26PM -0500 ^
Atta girl suzie, we are not misinformed people, we are people that come
here to share our experience, strength and hope with each other. I think
its
called principles before personalities. God bless you all,
Frank
In a message dated 1/13/2010 5:47:18 P.M. Eastern Standard Time,
[email protected] writes:
Jeanie:
Your last statement here made me almost laugh out loud! Is there a
place where we can go
where we can get all we want out of life???? I want to know, cos'
if there is, I'm getting my ticket first
thing!
But on the serious side.....I agree with everything you said here
100%. I have "sworn"
off watching, listening, or reading the news because I've decided that
they are not
truthful.....or the ones who are, use it to scare the living daylights
out of you. I am
much happier now & not so "angry" about who's doing what or what
"might" be
coming. Those out there may say I'm just sticking my head in the
sand, but no,
I choose to live my life "my way" not "their way" & that's what makes
a big difference.
I'll have my say at the voting booth come election time.
Now, that said....let's get back to what's important here
people.....our health & living with CML!
God Bless You All,
Suzieq
--
[CMLHope]
A support group of http://cmlhope.com
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Topic: Health Care
kellyelise <[email protected]> Jan 14 07:04AM -0800 ^
I'm with you Michael! And Suzieq, I too, have quit watching the news
because I'm sick and tired of the untruths and attempts to manipulate
the American people. We are all in this together and healthcare
affects our group to a great degree regardless of "political
affiliation." I worry far too much, but, with good reason as I did not
receive ANY medication or treatment while I wandered in limbo between
insurance coverage and COBRA kicking in. As a result, the CML came
back. I am now happy to say I am back in "remission" so to speak and
am hoping and praying my insurance company doesn't decide that they
need their deductible prior to my receiving any more medication. I
simply can't afford it. This coming August I am eligible for Medicare.
I pray the rules don't change in the meantime. God Bless Everyone!
Kelly
"C.M. Houtz" <[email protected]> Jan 14 10:29AM -0500 ^
Hi Kelly,
I agree with you about watching the news and getting a lot of untruths,
etc.
We all need good health care. If you have it already, it isn't going to
be
taken away. I happen to be among the lucky ones who have it, and it's all
from the government and working quite well. People are afraid of the
unknown and I understand this too. I hope that all goes well and that
your
Medicare will kick in and be a good thing for you. I have that and
Tri-care
for life as my husband retired from the military after 20 years. He also
retired from the state, and we had wonderful coverage, which was pulled
from
us and left us hanging. I was a wreck after that until I decided to drop
it
and go to Tri Care. None of us ever know what's going to happen with our
health care and can just pray that it will all work out okay. I pray that
yours will......Stay in touch and let us know how you're doing. I'm so
glad
you're in remission. Millie.
----- Original Message -----
From: "kellyelise" <[email protected]>
To: "CMLHope" <[email protected]>
Sent: Thursday, January 14, 2010 10:04 AM
Subject: [CMLHope] Re: Health Care
I'm with you Michael! And Suzieq, I too, have quit watching the news
because I'm sick and tired of the untruths and attempts to manipulate
the American people. We are all in this together and healthcare
affects our group to a great degree regardless of "political
affiliation." I worry far too much, but, with good reason as I did not
receive ANY medication or treatment while I wandered in limbo between
insurance coverage and COBRA kicking in. As a result, the CML came
back. I am now happy to say I am back in "remission" so to speak and
am hoping and praying my insurance company doesn't decide that they
need their deductible prior to my receiving any more medication. I
simply can't afford it. This coming August I am eligible for Medicare.
I pray the rules don't change in the meantime. God Bless Everyone!
Kelly
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