I couldn't have said it better Marty but I too get down sometimes so I know what our group goes through. Just fight on warriors!!! I have had to start my fight over just like I did 11 year ago and with a little known tki. So let us keep the faith and encourage each other daily. ❤️❤️
My Motto: Faith and Pills Jeanie 🐟🐟18,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 Aug 25, 2015, at 9:06 AM, Marty Gartenberg <wa2...@gmail.com> wrote: > > > 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 >>>> >>>> >>>> -- >>>> -- >>>> >>>> [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 CMLHope@googlegroups.com >>>> To >>>> unsubscribe from this group, send email to >>>> cmlhope-unsubscr...@googlegroups.com >>>> 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 >>>> cmlhope+unsubscr...@googlegroups.com. >>>> For more options, visit >>>> https://groups.google.com/d/optout. >>>> >>>> -- >>>> -- >>>> [CMLHope] >>>> A support group of 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