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 <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 > > > -- > -- > > [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 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 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 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 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 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 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 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 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 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 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 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 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 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 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.