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Rose eden Guanzon
ParticipantHe is doing very well. Thank you for asking. He even breezed through his 2nd dose of the covid-19 vaccine. His counts are normal. We consider each day a gift and are grateful.
ParticipantWhen I read this, I just felt happy that your grandfather has you, Michael. MDS is so delibitating and having a loving caregiver gives real comfort.
Pat, I am so sorry for your loss. Though we have never met, you made me feel less alone when my husband and I were so scared after the transplant. Praying for your husband’s soul and for you too!ParticipantHi Pat, My husband is getting his 2nd dose tomorrow (pfizer). So far so good. Just a slight ache at the injection sight the first time. I will keep you updated. But his BMT was 2 years ago.
ParticipantHello. We are back in the US. Arrived March 10. It is our 8th day of voluntary self quarantine, and we are just grateful that there is no sign of any CoVid infection. Stay safe everyone.
ParticipantOh I hope he responds to Decitabine well. I continue to keep you both in my prayers. Chris and Paul too.
ParticipantThank you Pat. How is your husband? I continue to pray for strength for all of us touched by this bewildering MDS.
ParticipantHello eveyone. My husband is getting better but he is not following a consistent uptrend. It is more like a balancing act between not so good days and bad days. It is because he hasgvhd and cannot seemed to be weaned from prednisone. Every time he is down to 15 mgs., his ankles, sometimes arms, sometimes both, start to swell and redness. His eyes too become bloodshot -as if blood vessels broke.his eyes are not painful. There is pain though when his legs or arm swell. But he was considered well enough to travel so we flew for a 7.week vacation to the Philippines. We are here now and closely monitoring the coronavirus outbreak in south korea.this is our stopover enroute to jfk on march 9 and we are scared that he may get infected. We are seriously thinking of buying new tickets for a straight flight to jfk – no stopover. We do not have enough meds to wait out the outbreak. Wish us luck!
ParticipantSo we are on day +160 and they did another chimerism test today. We will know in 2 weeks how the transplant is going. They also tapered the prednisone from 60 to 30 today. His counts are great and we have actually taken a train to NYC to just visit and walk around. I thank you for the prayers and encouragement.
ParticipantIt 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.
ParticipantHi. My husband is now on day 150. He is experiencing same symptoms: extra sensitive gut, eyes are always dry, red sometimes and his vision has worsened as opposed to having great, no issues eyesight prior to transplant. He now finds it hard to read and has migraines. His ankle is always swollen too. Little appetite and no energy. But of course we see other patients with worse gvhd issues and we feel we cannot complain. Anyone out there who came out scatfree from a transplant?
ParticipantDay 95
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.ParticipantDay + 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.ParticipantDay + 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 12, 2019 at 10:18 pm in reply to: Anyone out there who has been successfully cured by a bone marrow transplant? #46731ParticipantHi Reggie. Good to hear your Dad is doing well. We went ahead and underwent the transplant. Hurray! The chimerism test came back 100% on the 28th day. The test will be repeated on the 56th day. I am so happy and relieved that the anticipated side effects did npt happen or were not as bad as i have googled.
May 5, 2019 at 5:49 pm in reply to: Anyone out there who has been successfully cured by a bone marrow transplant? #46632ParticipantThank you Reggie. We are now on our 30th day post transplant and same with your dad, my husband underwent a RIC. The donor was her younger sister who matched 10/10. So far there has been no indication of GVHD and we are cautiously celebrating every step of his day by day improvement. He is still on saline and magnesium infusions to counteract any adverse reactions to tacrolimus (his antirejevtion med) but we are home. We are still waiting for the chimerism results. I am glad your dad’s health is on the mend.
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