Hi Jeannie, Beth, Richard as well as everyone on this site, I have a friend (not had a friend, and still have this friend) who had CML a little while after I had my transplant. At the time there were no TKI's but there were only two things available. One was a bone marrow transplant which was in it's infancy at the time and the other was Alpha interferon but on an early study basis which actually was a blind study. Depending on if those in this study would be receiving this Alpha Interferon or a placebo.
Even before my friend I had to chose the Interferon or the placebo in this blind study. I spoke with a lot of oncologists about what to do. However there were no concise answers because on one hand there was something that was still in a blind study and who would know if that would even be given to this patient or would the BMT be the way to go? However, since there were no matching donors, but one, his brother who refused, and I could never understand that, but since there were no other choices he had no other choice but to try that blind study. Well he was lucky enough to be accepted. And I have to tell you that he really suffered some really bad side effects for years afterwards. Eventually they were unable to detect any more CML, but he still refused to go off of the Alpha Interferon and I suppose this was a crutch in his life so he still remained on it for many years. So I guess that he finally decided to go off of it. Once that happened his life took a dramatic turn. No more side effects and no more CML, and he is still alive and doing remarkably well today. As far as me, well my only choice was the BMT because of two reasons. Since my white blood counts were at the time over 486,000 and doubtful that I would survive, but basically the same thing with the BMT but at least I had my sister as a donor who just happened to be a perfect HLA match. So I tried the BMT, and it worked. But yet there is still more to this story and some of you might remember Zavie Miller and all three of us used to get together, and called ourselves The Three Musketeers. This was well after Zavie got to know Dr. Druker and he was started on STI-571 which when approved by the FDA turned into Gleevec. So after that we all turned into The Three Musketeers. All of this is ancient history but my point is that whether to go off or continue on the TKI's because you may be actually "cured" of CML but you may still hold the touch of the crutch. So you see that there are different strokes for different people. Fortunately I don't have to make the choice because I already did and believe me I really did suffer, but in the end it was worth it. Now knowing what I would do if my circumstances were different I think that I would be off these TKI's and live my life, and if something happens then you will have to deal with it, and you will. Remember a crutch is a terrible thing to have. I spend a lot of time trying to help, and your all very special people to me as I am to you. Those are my words of wisdom and please never forget what 18's stands for. It is life yours and mine! 18's Marty i On Thu, Oct 8, 2015 at 12:24 AM, Richard H <[email protected]> wrote: > Just a quick glimpse about a med break. The end of March when I went to > the hospital with Vertigo, The short break I had on medicine did wonders > for me. Found some I shouldn't have been taking, stopped some all > together. I have felt so much better that I would do it again under total > control. Worried? Yes, but I realized afterwards it should have been done > earlier. > > Richard H. > > On Wednesday, October 7, 2015 at 4:27:30 PM UTC-5, Beth wrote: >> >> >> HI Jeannie and all, ...I am due for BCR abl testing so should get it in >> the next two weeks, results two weeks later...so I will update when I know >> more...Had a consult today at the Block Center here in Illinois.People tend >> to love him or hate him... I really like him. He thinks all my issues are >> sprycel related. Thinks I should go off everything and have drug holiday to >> give my autoimmune system a rest....steroids briefly to try and lower cpk >> so I can move better without such a severe boomerang effect. Back issues >> are no worse. That's good news from my end....since there have been several >> of my fellow warriors here who have lost there remissions spontaneously >> after years of successful treatment with their TKI's. I am scared to go >> off, unless I have to ...ie. like I did for past surgeries....however, I am >> thinking about it...perhaps I am just too toxic, and time off would help me >> to rebuild and repair, and tolerate better the TKI"s when I re-uptake in >> the future......so I am sitting with this decision..Not sure what I am >> going to do...except pray, and listen to other's words of wisdom....I know >> if I ask Dr. Druker, he would be fine with my taking a drug holiday..but I >> emailed anyway......thoughts from my friends here???? >> >> >> Love and 18;s, Beth >> >> -----Original Message----- >> >> >> >> From: 'Icandoallttc' via CMLHope <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Wed, Oct 7, 2015 12:59 pm >> Subject: Re: [CMLHope] Test Day >> >> Hi Beth and how are you?? >> Would love to have an update on all. Thanks!! ❤️❤️ >> >> 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 Oct 7, 2015, at 11:35 AM, bkbarney via CMLHope < >> [email protected]> wrote: >> >> Dear Richard, >> Sounds like good news all the way around. Hope your counts continue to >> hold well and the November visit to the onc is a positive one! Your wife is >> healing well..slow and steady. Thanks for sharing the good news....Keeping >> you both in my thoughts and prayers. Beth >> >> >> >> -----Original Message----- >> From: 'Icandoallttc' via CMLHope <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Wed, Oct 7, 2015 9:26 am >> Subject: Re: [CMLHope] Test Day >> >> Hi Richard and happy you are better. I hope your wife will be home soon. >> Prayers always. >> >> 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 Oct 7, 2015, at 12:01 AM, Richard H <[email protected]> wrote: >> >> All is good at this house. Saw Kidney Dr. and my tests have improved the >> last 3 times. Took my CBC and I am keeping my Hem. is holding at 10. I >> hope it stays there until the end of Nov. when I visit my ONC. >> >> My wife is improving, and will see the Dr. Oct. 21st to see if she can >> start putting weight on the right side. Shoulder seems to be healing >> nicely. She has the healing knot on the shoulder and is feeding herself >> with her right hand and is raising the upper arm to almost shoulder height >> without pain. We are hoping she can come home in Nov. when she can get out >> of the wheel chair and up and down without help. Due to heart surgery and >> a pacemaker all I can due is call for help if she has a problem. >> >> 18's >> >> Richard H. >> -- >> -- >> [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. >> 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. >> 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. >> 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. > 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. 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.
