Thanks Marty. Richard H.
On Thursday, October 8, 2015 at 6:56:39 AM UTC-5, wa2yyx wrote: > > 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] > <javascript:>> 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] >> <javascript:> >> To unsubscribe from this group, send email to >> [email protected] <javascript:> >> 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] <javascript:>. >> 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.
