Dear Joyce,
Thanks so much for your reply. I apologize for not responding sooner. I have
not been feeling great. I go up and down, undetectable and showing but with
very low numbers....what is considered a major molecular remission...with CML
testing positive. My struggles have always been the side effects and y body's
capacity to tolerate the drugs. They do work for me which is great! this past
year, post a botched lower back surgery and the subsequent second surgery to
correct the fist one..seemed to erupt something in me and I am struggling with
significant lymphedema/lipoedema. So, I am wearing compression garments, on
legs, arms and torso except when I sleep.it's been debilitating in terms of
movement..There is also no cure, like CL, just management...I don't know how
this happened but it's here and I have to learn to live with it and manage
it.while so many others have it so much worse, I try to stay positive, and be
forward looking, with gratitude for what I do have, but this is taking a toll
on my spirit. It feels lonely and isolating. People stare at you. it can be a
cruel world. All I want is to feel well and strong in my body...I am doing
everything I know to do..
If anyone here has had this type of reaction from taking a TKI, specifically
sprycel..please let me know. It is clear, from my constantly elevated CPK which
is rising, and the lack of healthy collagen and muscle building capacity in my
body that sprycel is inhibiting more than the protein that causes CML. I am
hopeful for new drugs that will be developed in the future that might work
better for me. I miss everyone and send love and 18's to all of you..big group
hug!!!
Beth
-----Original Message-----
From: Joyce Mesnarich <joy...@htc.net>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Jul 25, 2015 12:35 pm
Subject: Re: [CMLHope] New results
Thanks Beth,
I think these TKIs are so new that they do not fully know all the side effects,
and especially not the long term ones. We are confident in his doctor and he
is watching it closely. Have you reached "undetectable" on your low dose of
tasigna?
Thanks for your good thoughts.
Joyce in IL
On Jul 24, 2015, at 10:36 PM, bkbarney via CMLHope wrote:
Hi Joyce, I am so glad that your husband's CML numbers are going in the
right direction. The cml journey is often a balancing act, between the right
dosage and side effects...Maybe your husband could be on 150 of busutinif with
time??? It seems that 200 put him close to remission. I had to go off tasigna
because of elevated liver enzymes, 10 X normal. Going off the med for a short
time to give the liver a rest, and then using the lowest possible successful
dosage...seems to work for some people. I hope your husband's liver calms down.
I will keep my fingers crossed. 18's Beth
-----Original Message-----
From: Joyce Mesnarich < joy...@htc.net>
To: cmlhope < cmlhope@googlegroups.com>
Sent: Fri, Jul 24, 2015 7:50 pm
Subject: Re: [CMLHope] New results
Jeanie,
I know you have been dealing with that pain for a long time. Medicine has
come so far and yet the Good Lord holds some secrets from us. I hope in Sept
they will get a clue as to the pain's cause.
Joyce in IL
On Jul 24, 2015, at 11:20 AM, 'Icandoallttc' via CMLHope wrote:
Just wanted to say that I take OTC pain killers and have tried prescription
ones. I have a right side pain that won't go away and they can't find out what
it is. Nothing seems to help the pain.
They are doing a ct scan in Sept to see if they can find it but they have
already done that with no luck. Blessings
My Motto: Faith and Pills
Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center
On Jul 24, 2015, at 12:14 PM, "'Icandoallttc' via CMLHope" <
cmlhope@googlegroups.com> wrote:
Hi Joyce.
It looks like your liver counts are 1-10% common to increase on that drug.
Read the information that comes with the meds. Read the whole document
through.
They will stabilize as well as other side effects.
It seems I will go from one side effect to another as time passes.
Fight on. Good luck.
My Motto: Faith and Pills
Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center
On Jul 23, 2015, at 11:43 PM, Joyce Mesnarich < joy...@htc.net>
wrote:
Jeanie,
Thanks for your interest and suggestion. We have gone over all his other meds
with doctors and nothing should affect the liver. He doesn't take any OVC pain
meds, or any pain meds. And he does not drink alcohol. The primary doctor
says that the drug information for bosulif says it can cause liver problems,
but Dr Talpaz is less certain of that and he is the specialist. He says he is
watching it closely and I guess we will just trust him. Wayne is getting blood
tests every other week locally and they are sent to Dr Talpaz. The liver
enzyme levels seem to have stabilized, although they are elevated. As you say,
faith and pills. One of Wayne's mottos is "Better living through chemistry".
LOL I think that used to be part of a TV ad for a large chemical company,
maybe Du Pont or Monsanto.
Joyce in IL
On Jul 23, 2015, at 11:32 AM, 'Icandoallttc' via CMLHope wrote:
Be careful with his diet. Ovc pain pills hurt the liver as well as other
drugs we take. Ask your pharmacy if any other drugs he take are hurting his
liver. It's hard but maybe they can figure out something.
Good luck.
My Motto: Faith and Pills
Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center
On Jul 22, 2015, at 2:01 PM, lrc lrc <
kneesrb...@gmail.com> wrote:
Joyce does he drink alcohol?
On Jul 22, 2015 1:43 PM, "margood18 via CMLHope" <
cmlhope@googlegroups.com> wrote:
Joyce, so glad to hear that your husband's PCR is
lower and I hope that his liver function will steady. Best wishes to both of
you.
Marcie
-----Original Message-----
From: Joyce Mesnarich < joy...@htc.net>
To: cmlhope < cmlhope@googlegroups.com>
Sent: Wed, Jul 22, 2015 12:16 pm
Subject: [CMLHope] New results
Hello everyone. I have not had time to contribute for awhile. But I must let
you all know the results of my husband's PCR at his last visit to Dr Talpaz. He
was taken off Sprycel due to pleural effusion and we were hoping his
undetectable would hold....but it did not. He was subsequently put on bosulif
and not showing much improvement after 3 months. So his dosage was changed from
100 mg to 200 mg. And now, after 3 more months, his PCR went from 8.7 to
0.127!! Hopefully in another 3 months he will once again reach
undetectable.
The downside of his test results is that the liver function
tests have increased a lot. The doctor will not really say that bosulif is to
blame, but nothing else has changed. Has anyone of you CML warriors had any
problems with the liver while on TKI's? Was there any treatment to help the
liver?
God bless you all.
Joyce in IL
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