Hi Again Choi, Do you know if there are any qualified CML specialists any ware around you in South Korea? If not then probably making the trip over here might make sense. I could do a little research to try and help him out but doing nothing is not the answer.
The way that I always think being an engineer is there is usually a solution to a problem if you think about it, and everything is meant to be. There is a word in the Aramaic Hebrew language language actually two words called Bashert which means meant to be, and if you add an A to the end of it, then it becomes Basherta your soul mate. Choi, I just want to let you know that you or your friend can find a lot of help from the people on this site and if I were you and especially him to use this help because you never know who can help you out. I would like to leave him with a special prayer that really helped me just before I had my bone marrow transplant. It was left pasted onto one of the outside of the plastic walls of the of the sterile bubble that I had to live in the hospital for many months while I had to live in there. Don't worry they usually don't do that anymore. Now you know what I mean when ever I end am e-mail with 18's. Make sure that your friend reads this. *A PATIENT’S PRAYER * *Eternal GOD, source of healing, out of my distress I call upon you. Help me to sense your presence at this difficult time. You have already sent me gifts of your goodness: The skill of my physician, the concern of others who help me, the compassion of those I love, and who love me. * *I pray that I may be worthy of all these, today and in the days to come. Help me to banish all bitterness; let not despair overcome me. Grant me patience when the hours are heavy; give me courage whenever there is hurt or disappointment. * *Keep me trustful in your love, O GOD. Give me strength for today, and hope for tomorrow. To your loving hands I commit my spirit when asleep and when awake. You are with me; I shall not fear. Help me, O GOD, in my time of need. * *18's* *Marty* On Sun, Jan 24, 2016 at 3:28 AM, Choi <saehyun...@naver.com> wrote: > Marty, > > He lives in South Korea and also rejected his doctor's suggestion because > he didn't think that he would survivie after half-matched transplant. I > told him your message and he will get another doctor next week. > He also told me that he would like to express his gratitude to you. Thank > you for your message. > > > Choi. > > 2016년 1월 23일 토요일 오후 12시 59분 29초 UTC+9, wa2yyx 님의 말: > >> Choi, >> >> I can't even imagine why that doctor would ever want such a mismatch, and >> maybe I am not the best one to judge but the last time that I have ever >> heard of such a mismatch it was his mother that gave him her marrow and he >> got such a bad case of GVHD that he died shortly after. If he can't find a >> suitable match then I would still keep on looking but at least there are >> those TKI's and he just may try to find the best one for his needs, and in >> order to do that yes he must get a good Oncologist with experience with >> CML. By the way where does he live? Maybe there is someone close by and >> even if not you could always to get in touch with Dr. Brian Druker in >> Oregon or Dr. Moshie Talpaz in Mich. Depending on where he lives it may >> make sense to consider an appointment. As far as I am concerned those two >> ar probably the best dealing with CML. >> >> Please do not mess around with this just get the best doctor you find >> that deals with CML. >> >> 18.s >> >> Marty >> >> As it was when I had my BMT it was my sister that was my donor and at >> that time there was a standard of having a 6 out of 6 HLA match and at the >> time it was consired to be a perfect match. Right now the last I heard it >> was a 10 out of 10 HLA match and that was several years ago, and I haven't >> looked lately. >> >> On Fri, Jan 22, 2016 at 4:43 PM, Choi <saehy...@naver.com> wrote: >> >>> Marty >>> >>> Since he couldn't find a matching dornor and doesn't want half-matched >>> bone marrow transplnat, he is now considering getting another doctor. He >>> has no choice except TKI right now. I also feel that half matched bone >>> marrow transplant would be wrong decision. >>> >>> >>> Choi. >>> >>> >>> >>> 2016년 1월 22일 금요일 오전 4시 53분 2초 UTC+9, wa2yyx 님의 말: >>> >>>> Choi, >>>> >>>> GET ANOTHER DOCTOR immediately!!! This guy can't be a CML specialist or >>>> he would have never mentioned getting a half matched bone marrow >>>> transplant. Besides getting severe GVHD it will probably fail in a short >>>> time. Do you know where he is located? and is there someone that >>>> specializes in CML? >>>> >>>> 18's, >>>> >>>> Marty >>>> >>>> On Thu, Jan 21, 2016 at 8:36 AM, Choi <saehy...@naver.com> wrote: >>>> >>>>> Hi. This is Choi, >>>>> >>>>> My family was diagnosed with CML in 2001 and have been on Gleevec. I >>>>> have made a lot of CML friends since then. >>>>> Recently I've met a man who was diagnosed with CML during the acute >>>>> stage in 2015. I think it was on May. >>>>> He had gone through Chemo(I think it's remission induction therapy) >>>>> after being diagnosed, he got reached remission and then was on Gleevec. >>>>> His doctor initially considered bone marrow transplant but couln't >>>>> find a matching dornor. Fortunately 3 months PCR testinng during the >>>>> Gleevec shows 0.03%. >>>>> It was just 3 months ago. However today his PCR testing shows 1.5% and >>>>> I don't know why but his doctor swithed to Sprycel and >>>>> suggested half-matched bone marrow transplnat. >>>>> He is in a dilemma. He wants to be on TKI treatment because he doesn't >>>>> have a mathing dornor. >>>>> Have any one had a similar experience? >>>>> >>>>> >>>>> Choi. >>>>> >>>>> -- >>>>> -- >>>>> [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 cml...@googlegroups.com >>>>> To unsubscribe from this group, send email to >>>>> cmlhope-u...@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+u...@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 cml...@googlegroups.com >>> To unsubscribe from this group, send email to >>> cmlhope-u...@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+u...@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.
