Sorry to hear about you troubles. Everyone has given great advice. My advice is remember the little train from the children's books. He says, "I think I can , I think I can, I think I can! I think I can!!. Then he looked back and said "I did It". We all know you can too.
18's Richard H. On Monday, August 24, 2015 at 11:23:31 AM UTC-5, Beth 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 <javascript:>> > To: cmlhope <cml...@googlegroups.com <javascript:>> > 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 <javascript:>> > To: cmlhope < cml...@googlegroups.com <javascript:>> > 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" < > cml...@googlegroups.com <javascript:>> 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 > <javascript:>> 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 < knees...@gmail.com <javascript:>> > wrote: > > Joyce does he drink alcohol? > On Jul 22, 2015 1:43 PM, "margood18 via CMLHope" < cml...@googlegroups.com > <javascript:>> 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 <javascript:>> >> To: cmlhope < cml...@googlegroups.com <javascript:>> >> 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 ofhttp://cmlhope.com >> ------------------------------------------------- >> >> You >> received this message because you are subscribed to the Google Groups >> "CMLHope" >> group. >> To post to this group, send email to cml...@googlegroups.com <javascript:> >> To >> unsubscribe from this group, send email tocmlhope-u...@googlegroups.com >> <javascript:> >> For more options, visit this group athttp://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 >> tocmlhope+u...@googlegroups.com <javascript:>. >> For more options, visithttps://groups.google.com/d/optout. >> >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> 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