April 16, 2019 at 7:14 pm #46517
Day + 13
We are going home tomorrow. The central line on his neck has been replaced by a PICC. Alleluia! We hope that the worst is over and pray that the stemcells of his sister find a good home in him. Pray, hope and do not worry! is my mantra.April 17, 2019 at 7:19 am #46525SueParticipant
So happy for you both Rose! Was very surprised and pleased that he is leaving at Day +14; is that because he had a low intensity chemo – or just because he is a star patient? 🙂 We met with our transplant team this week and my husband is ‘on the launch pad’ (as his doc put it) for a transplant very soon, with an anticipated hospital stay of 4-6 weeks. Because we are 2 hours away from the center we will need to stay in Buffalo (Roswell Cancer Center) for another 1-2 months after discharge. Initially the transplant doc didn’t seem to be in much of a hurry to move until he reviewed his most recent biopsy which indicates he has acquired an abnormal monosomy 7, and has 3% circulating blasts. And so the journey begins. My best to you and your husband – sending prayers and good thoughts your way.April 18, 2019 at 1:07 pm #46545Paul DyerParticipant
So good go hear things are progressing for you. From here on out, it’s a slow and steady battle. Remember, every little victory is one step closer to overall success!April 19, 2019 at 4:31 pm #46549
Day + 15
Hi guys and gals. The docs say he was allowed to go home because his wbc is back to normal and he had showed no symptoms of adverse reactions to the transplant or to the any of the antirejection drugs. But it is too early to tell if the transplant was successful. Well, we count our triumphs by miniscule steps and we are just happy. We are staying near the hospital too. We are actually scared of being too far from the hospital. I suppose with each new day, we will eventually wean ourselves away from it.May 12, 2019 at 10:42 pm #46732
Day + 40
We just got the chimerism result for day 28. It is 100%! Thank you for all yours prayers. My husband is doing well and we are content to measure success on a daily basis. The awful side effects we expected, in retrospect were not truly that awful. Thank you God.May 13, 2019 at 6:35 pm #46735Mirna MihParticipant
Great news. Best of luck!May 15, 2019 at 4:10 pm #46745Pat LawsonParticipant
So glad to hear that he is doing so good!!!June 13, 2019 at 12:05 am #46898
Day + 30
The first chimerism test came back and it is 100%. His counts are great. For the first time since his diagnosis of mds, we are seeing double digits rbc and his platelets are normal. His wbc has gone up from 0.3 to 3.7. Lord pls. Let this trend continue.June 13, 2019 at 7:43 am #46901Bob CookParticipant
Excellent ! I share in your joy today !July 4, 2019 at 8:43 pm #47003
I am so sorry i was not able to update this post for a long time. My husband’s 30 day post transplant chimerism test came back 100%. Then he started to have lbm and some rashes. His 60 day chimerism test results was only at 45%. They have put him on 40mg of prednesone. We are on our 3rd prednisone week now. His lbm is almost gone, so are the rashes. The prednisone has been reduced to 30mg. They did a bone marrow biopsy on the 90th day and we are awaiting results. So far the only sign that there may be gvhd is the lbm. Oh God! Please make this work! God bless to everyone.July 6, 2019 at 2:41 am #47008Amy ClarkParticipant
Rose, I just prayed for you and your husband. I am sorry this is such a roller coaster of emotions. I know from your earlier posts that your faith is helping you through this time. I will ask for peace and strength and wisdom to be given to both of you. Thank you for sharing and keeping us updated when you can. I look for your posts and feel grateful to hear how you all are doing. Don’t ever think that no one reads or cares on this forum; many of us are just silent cheerleaders and prayer warriors. Hang in there. Very glad to hear that the prednisone is working for his rash and lbm. We are hoping for the best results possible of the biopsy. AmyJuly 6, 2019 at 2:36 pm #47012Dale FrankParticipant
Rose, sending my very best hopes for you and hubby. Thanks for all the info in your diary. It is so helpful to those of us dealing with MDS and considering SCT. I just got on the forum and so read your posts “retroactively”. I have a good feeling for your outcome.July 8, 2019 at 4:17 pm #47026Lori KissingerParticipant
Hoping for the best for you and your husband, Rose. I too appreciate all the info in your diary as I will be undergoing SCT in a few months. May your faith get you through all the ups and downs.September 9, 2019 at 4:37 pm #48806
It is now Sept. 10 and my husband is 5 months post transplant. He is constantly on prednisone because gvhd is rearing its ugly head. But our doctor is saying we should nit worry be cause gvhd is not bad up to a certain degree. It is an indication that the donor cells are fighting any remaining cancer cells too. On day +100, my husband’s chimerism test was 100% but a rrepeat at 121 days showed 45% only. At 140 days it was 63% and at 150 days it was 47%. We are hoping that at 180 days it will go up. I thought when the transplant took, we were home free but i guess the rollercoaster ride continues. Gvhd affects his gut, his eyes, his ankles are swollen, red and painful and sometimes is skin. But there are good days too. His cbc is almost normal. The transplant just gave him a new lease on life.September 10, 2019 at 2:18 pm #48819Dale FrankParticipant
Thanks for the update. Best wishes to you and hubby.
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