Beth,
I'm so sorry you are having such a difficult time. I knew that things were not easy for you but I did not realize just how tough. I pray, too, that new drugs will come on the market to alleviate the terrible side effects so many experience. I'm keeping you in my thoughts and prayers. Marcie -----Original Message----- From: bkbarney via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Aug 24, 2015 12:23 pm Subject: Re: [CMLHope] New results 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 -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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