Dear Beth and Marty,
I'm feeling uplifted!! Thank you.
Joyce in IL
On Aug 25, 2015, at 5:07 PM, bkbarney via CMLHope wrote:
> 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 <[email protected]>
> To: cmlhope <[email protected]>
> 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 <[email protected]> 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 < [email protected]>
> To: cmlhope < [email protected]>
> 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 < [email protected]>
> To: cmlhope < [email protected]>
> 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" <
> [email protected]> 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 < [email protected]> 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 < [email protected]> wrote:
>
> Joyce does he drink alcohol?
> On Jul 22, 2015 1:43 PM, "margood18 via CMLHope" < [email protected]>
> 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 < [email protected]>
> To: cmlhope < [email protected]>
> 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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