Decision time!

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• January 12, 2005 at 9:13 pm #3124
  Davea

  Member

  Just got home from a meeting with my BMT Dr. Apparently they have what he calls a good unrelated match for me. One of his comments was that 5 years ago this match would have been considered a perfect match. There’s one mismatch on the C antigen. He’s asking me to make a decision on the transplant within the next 4 weeks. What to do? Any and all comments welcome.

  January 12, 2005 at 9:25 pm #3125
  B. Greene

  Member

  It is such a hard decision and one only you can make of course. My first thought is do you trust your doctor and the hospital where they would do the procedure. I would want to know how many they’ve done and the results etc. I suppose I would also want to know if it was absolutely necessary that it be done right now. I know they don’t want it to transform. Your age is a big plus as I am sure you know. Deep down how do you feel about it, I think that sometimes means more than anything else. How fast has this been moving along, from the time of dx, until say you had to be trans. and have they had to be more often.
  I assume you haven’t had any chemo which is good.
  We’ll be thinking about you and you try to decide. Barbra

  January 12, 2005 at 9:27 pm #3126
  B. Greene

  Member

  It is such a hard decision and one only you can make of course. My first thought is do you trust your doctor and the hospital where they would do the procedure. I would want to know how many they’ve done and the results etc. I suppose I would also want to know if it was absolutely necessary that it be done right now. I know they don’t want it to transform. Your age is a big plus as I am sure you know. Deep down how do you feel about it, I think that sometimes means more than anything else. How fast has this been moving along, from the time of dx, until say you had to be trans. and have they had to be more often.
  I assume you haven’t had any chemo which is good.
  We’ll be thinking about you and you try to decide. Barbra

  January 12, 2005 at 9:34 pm #3127
  B. Greene

  Member

  That was suppossed to be as you try to decide. For some reason couldn’t edit post. I also wondered what is cyclosporine for? I don’t know why this posted twice. Sorry.

  January 12, 2005 at 9:54 pm #3128
  Davea

  Member

  Barbra – I’ve been getting 2 units of RBC every 4 weeks for the past several months. My platletts have gone as low as 6000 back in May of 2004. Had 3 transfusions of platletts back then. Currently my platletts are at 15000 which is a drop from 20000 over the past 3 months. I was put on cyclosporine last June, which seems to have helped some with the platletts. My WBC stays close to normal with the neuopegen shots every second day. Cyclosporine reduces the T-Cells which may play a role in destroying cells that turn into platletts. This is my understanding! Deep down I feel it’s my only chance at a long term survival. Dr. advises that the best chance for success would be to do a transplant within the next 3 months.

  January 13, 2005 at 1:08 am #3129
  B. Greene

  Member

  Dave if you’ve read our saga over the last two years you know the pure hell we have gone through. If we knew then what we know now and the biggie, if there had been a match, I don’t think there would be any hesitation on our part about going ahead with the SCT in our case as Ron is older. But we would be very careful about who did it. I don’t know as much about the full blown BMT as I do about the SCT but I sure saw alot of those while we’ve been in and they were successful. The ones that seemed to have the most problems were the ones who had already undergone chemo and the residual effects from that. The more chemo sessions the more problems. I probably say way too much but I absolutely would not do it when there were so many germs around, flu, colds etc. I also would ask about the hospital stats on VRE and other infections which you pick up in hospitals. This is really important.

  I realize the GVH is an issue but it appears that they are getting better and better in dealing with it.

  We would do the chemo over again because that is the only choice we had and it has given us many good days as well as some horrible ones.

  I think this is what the call between a rock and a hard place. You have to do what you feel is right for you. You’ll know and then work it out.

  January 13, 2005 at 2:54 am #3130
  Bill and Mary

  Member

  Dave
  In case you have not seen it, there is a site you should take a look at for BMT and SCT, http://www.acor.org/diseases/BMT/bmt-talk.html Pam L sent it to me. I have joined it becase I too may be facing your decision.

  I think I would like to know more about the problems that one mismatch could cause. On the GVHD front, everything that I have seen on the BMT site seem to indicate that it can be serious and unplesant but it is managable.

  Good luck with your decision. I still do not know which way I will decide, if I have the oportunity. I should get some idea when I go to the Hutch at the end of the month.

  January 13, 2005 at 3:23 am #3131
  sarah

  Member

  Dave, sounds like you have gotten some good sound advice from Barbra and Bill. It is a tough decision for you to make. I will keep you in my thoughts and prayers. Where will the procedure be at?
  Sarah

  January 13, 2005 at 2:39 pm #3132
  frank

  Participant

  Dave, i am facing the same problem as waht you have, but i have not went through the match game yet. from my hemo doctors(2 doctors) told me, i may go for it ASAP, but Doctors from Johns Hopkins Univ. gave me a new info on it, check the paper of on Blood, 15, July 2004, Volume 104, Number 2. the name of the paper is Decision Analysis For MDS, in the paper, it suggest delaying the BMT as your diease progress if you have a stable MDS(not say for transfusion depentable).
  from my research for this issue, it seems that do the BMT if you are a transfusion patient(like me).

  Hope it helps…

  Frank

  January 13, 2005 at 2:56 pm #3133
  sarah

  Member

  Frank, I went back and reread that paper. Very interesting.
  Sarah

  January 13, 2005 at 3:14 pm #3134
  Davea

  Member

  Sarah and Frank, I just read the article and I agree it’s very interesting. I’m from Canada and if I decide to have the BMT it’ll be done in Halifax, NS. At 48 yrs. old I feel very healthy, except for the MDS, and at this stage it may be my only chance to try the trnasplant option. Who knows maybe I’ll even get to go back to work some day! I’ll have a great caregiver, my wife, who is a registered nurse. Hope she’s up to the challange!

  January 13, 2005 at 3:31 pm #3135
  shirlsgirl

  Member

  Hi Dave,

  I just wanted to say good luck with your difficult decision. You are young and feel in good health, it’s probably a good time to go for it. How important is the one mismatch on the C antigen? Is it possible that a better match could be found? What ever you decide you have our support. Good luck! Jody

  January 13, 2005 at 3:38 pm #3136
  frank

  Participant

  i hope i can make the decision when i face to it. not easy for me to think it over for my twin girls…

  i basically don’t have clue on which way is better, but from most people here, it seems BMT is not a bad direction for people like us.

  you you have luck on this issue.

  Frank

  January 13, 2005 at 3:43 pm #3137
  Davea

  Member

  Jody, Dr. has been searching for 1 1/2 yrs. and feels strongly this is the best match that will be found for me. From my understanding the mismatch on the C antigen is not as critical as a mismatch on the Dr antigen. A few years ago they never even looked at the C antigens. This is my understanding from my Doctor. Thank you everyone for the support. This message board continues to be a great source of inspiration and information.

  January 13, 2005 at 4:47 pm #3138
  sarah

  Member

  Dave, That is my understanding also about the mismatch C antigen. Search continues after 3 years now for my husband a match. Nothing has even come close to date. Will keep you in my thoughts and prayers as you proceed with your decision. Speaking as a caregiver myself, when the time comes your wife will do just fine!
  Sarah

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