Dear Joyce,
SO sorry to hear about your breast cancer. I trust you will get through your
surgery and recover fully. Please know that if you do get lymphedema it is
treatable. Hopefully you will not have to deal with it. But if you do, believe
and hold hope that you will get better with time. It can be managed well...once
they get the right types of treatment in place. I am so glad for your news
about your husband's enzymes going down. We all have our challenges..but I want
you to know that my sparkle is not gone, that I love life, love helping others,
that I draw my strength, my light from being positive and trying to lift
others..It gives me perspective..there are always those better off and worse
off from each of us.
I am a fighter, and will continue to do so...just hit a wall that I needed to
name..it helps sometimes to name those things and then...carry on....lift
myself up...and move forward. I hope I can be a ray of sunshine for others one
day soon..
lots of love, prayers and good energy...
Beth 18's Marty..
-----Original Message-----
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, Aug 25, 2015 8:06 am
Subject: Re: [CMLHope] New results
Dear Beth and Joyce,
Sometimes things may not go as planned but sometimes they do go as planned.
This is what life is all about. I know what the both of you are going through,
and it does take someone that has already been their and done that, but you
still live on to do what you can do.
Every time that I open my eyes I know that in spite of everything that I have
already gone through there is yet another day that I have gone through.
I try not to complain but that is me, and just to list my "bucket list" let me
start off with my bone marrow transplant more then 26 years ago. It was a
"devastating" event but I lived through it because I had the will to do it.
Another several "devastating" events were the dialysis I had to go to for four
years, but I still lived through it. Going forward, the kidney transplant, and
then the prostate operation followed by the stroke all with in the past six
months. So what could be next for me? I don't know but what I do know is
whatever may happen to me I will deal with because I have always had the will
to live and mostly the attitude, and that's what I try passing on to so many
people, and in turn you pass it on to so many others because you are actually
helping everyone else, and it really isn't so much about me but yourselves.
And to prove a point just look at the post between both of you. And please
don't stop sending posts because you are the life line, and I know that it
really helps no matter what you may being going through.
I truly wish yourself the best of everything.
18's,
Marty
On Mon, Aug 24, 2015 at 8:37 PM, Joyce Mesnarich <joy...@htc.net> wrote:
Dear Beth,
I am so sorry to hear of your health experiences. You will be in my prayers.
I have always enjoyed reading your posts. Sorry you do not feel like staying
in contact and I am sure it is not easy with all the compression garments. I
have been diagnosed with breast cancer and will be having a total mastectomy in
Sept and I am concerned about lymphedema after that. I cannot imagine the pain
and discomfort you must be in. I wish I could be of some help, but we are
probably miles apart. Your postings were always so spirited and sparkly; I am
sorry to hear that you are losing your spirit. I hope that the second back
surgery was at least a success and I pray that this latest "thorn in the flesh"
will right itself and disappear just like it came.
My husband, Wayne, has had some good news about his liver enzymes: they seem
to be going down. They are still high but at least seem to be going in the
right direction.
God bless and and keep you.
Joyce in IL
On Aug 24, 2015, at 11:23 AM, bkbarney via CMLHope wrote:
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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