April 4, 2019 at 6:31 pm #46432
Today my husband underwent an allogeneic transplant. The conditioning done on him was the low intensity chemo because he is 67 yrs. Old. One of his sisters is a 100% match and we have high hopes.
He was diagnosed with high grade mds RAEBII in Dec 2017 and was put on decitabine on May 1,2018. He responded so well and was on remission 4 months later. He could do some carpentry again, fiddle with his audio equipment and even go shopping with us women to the mall.
He had 6 days of chemo before day 0. I have watched him get weaker and weaker as we neared day 0. But we have promised each other that we will give this transplant our best effort and all our cooperation. There will be no looking back and no second guessing our decision. So despite the weakness there is a quiet jubilation that day 0 is here. The stemcells are in his system. Now we wait.April 6, 2019 at 12:27 pm #46443
Day + 1
He was given Neupogen to increase his wbc. He is very weak and sleeps all the time.April 7, 2019 at 9:37 pm #46445
Rose thank you so much for publishing your diary on this site. My husband is going to meet with a transplant doctor this Thursday and I am so scared. He is in a trial right now and the doctor says he is responding beautifully to the treatment. I feel like he should just stay on the treatment since he is responding so well but his depression seems to be getting worse knowing that just doing treatments means that he has a limited time in this world. I am praying for strength and healing for your husband. Please keep up your diary it is greatly appreciated.April 8, 2019 at 12:39 pm #46455
Day + 2
His wbc is 13.3 and our doc discontinued the neupogen. She said not to worry. His old cells are dying but the growth of the new ones have nothing to do with that process. She expects to see improvement on the 9th day.
Day + 3
The fatigue is relentless but he managed to walk a bit outside his hosp room. He actually did 3 laps of our ward corridor. His wbc is still 13.3April 8, 2019 at 12:53 pm #46456
Hi Pat. I am glad someone is reading this. It makes me feel not so alone. I have noticed that nobody has really finished telling us about what happens after transplant in this forum. So i promised i will update this whichever way mds takes my husband. I am tired of being told positive things. I want the lowdown. My husband and i are scared too but he said he feels like he is in a burning building. If he stays, he will surely die but if he jumps, he may die but at least he tried to change the inevitable. Who knows? He may fall on something soft. So we continue to hope for the best and put our trust in our doctor.He has high grade mds and that is like 2.5 yrs average lifespan after diagnosis. We have already used up half of that time because he was also doing so well with decitabine. When we went into this transplant, he was on remission still.April 8, 2019 at 2:30 pm #46457Chris BallmerParticipant
Rose – I’m in a position of very possibly needing/getting a SCT. May be a year but it will happen. I’m reading your post and very interested and rooting for your family. My wife will be my caregiver. Hang in there and enjoy every day of life, it truly is the most precious thing. ChrisApril 8, 2019 at 4:39 pm #46461
Day + 4
The antirejection drugs of choice by our doctor are tacrolimus and cellcept. My husband is tolerating them better than expected and certainly better than the horror stories we read on Google. There were initial bouts of constipation, amazingly resolved by horrendous bouts of diarrhea which made him weaker and now we have achieved some sort of equilibrium wherein they are just happily soft. Stomach pain episodes are painful but brief. Nausea, yes but no vomiting. He said to eat even tiny pcs of crackers or 2 bites of hardboiled egg every 3-4 hrs no matter how tired to make sure stomach does not become too acidic. He also drinks lime juice. Halve a lime, use 1/2 . Squeeze, dilute with water. He likes his with some salt. He drinks this first thing in the morning before meds and in the afternoon. Except for these, he had not eaten for the lat 5 days and has lost 10 lbs.April 9, 2019 at 12:25 pm #46473
How long are they saying he will be in the hospital? Are you staying at the hospital with him and if so do they let you stay overnight in the room with him?
Keeping you both in my prayers. Stay strong.April 9, 2019 at 4:35 pm #46476
Hi Pat. Yes, they let me stay with him. We live about an hour’s drive from the hospital and i do not drive. So i have a suitcase of clothes and stay here all the time. My kind sister in law comes here, gets my dirty clothes and brings me fresh ones. The hospital has a caregiver’s room where i can shower. They are not strict about visiting hours too. Family can visit any time. We are at HUMC. The hospital staff has been nothing but kind and supportive.April 9, 2019 at 4:54 pm #46479
Day + 4
The constipation in the morning is happily resolved by mild diarrhea in the afternoon. My husband had bouts of nausea again but thankfully no vomiting. Hid wbc is still sky high at 13.4 but no fever or chills. He managed 5 laps around our hospital corridors. Tthe tiredness never leaves so everything is a matter of discipline. Even showers are milestones of his day.
Day + 5
The wbc is 6.9 and now the diarrhea is persistent. But we remain upbeat. Tired?? Oh, yes! But he has learned to establish what he can do. So he goes to the bathroom by himself. We are not scared that he wouod faint. It seems that the transplant process may make you feel as though you are about to die of tiredness but your body stops short of actually dying. Tomorrow our doctor says he will be back on Neupogen. The tacrolumus and cellcept are of course still given daily.April 10, 2019 at 9:13 am #46481Paul DyerParticipant
I am at day +158 from my allo transplant. I had a RIC (reduced intensity) chemo, but also had a clinical trial of venetoclax during conditioning.
I am a 50 y/o man diagnosed July 2018 with the dreaded TP53 mutation.
Every transplant is different, but I was released from the hospital the day after transplant! I did not experience the extreme fatigue or intestinal problems, but did have some nausea in the hospital.
As time progresses, it is hard to accept the small increments of progress. I have been cooped up in my home for almost 6 months (winter in Maine!). For the second time I am on prednisone to alleviate graft vs host disease (gvhd). I am happy that my 100 day marrow test showed no disease or mutation. My 180 day test approaches quickly, fingers crossed.
It is my understanding that it will be a full year from transplant before I can expect any type of normal.
Take each day, fight the current battles, enjoy the small signs of progress. Recovery is a slow process! Feel free to ask me about any of my experiences. Good luck, God bless!April 10, 2019 at 1:00 pm #46482
Chris, we are happy to hear from you. Thank you for keeping me company here. We are including you in our prayers too.
Paul i am so glad to hear from you again. We still continue to pray for your complete recovery. Yes,each transplant seems unique. The doctor gave my husband Neupogen after 24 hrs of the transplant. It is more common to give it on the 5th day after transplant. It is a relief to know you are doing well. You kind of dropped from the chatroom so to speak so i have wondered what happened. It is wonderful to know you are doing well. God bless!April 10, 2019 at 4:45 pm #46483SueParticipant
Rose – the timing on your diary is incredible. We are meeting with my husband’s transplant team next week. He had had such a great response to Vidaza when he started it in 2017 that I was certain it would last longer than the standard 2 years. Well almost exactly 2 years now and it has stopped working and his doc wants him to go to transplant ‘expeditiously’. So your diary is just a small peak into what we can expect. 4 years ago when he was first diagnosed he did not have a match on the registry, so unless something has changed, he will be going through a haploidentical transplant with stem cells from our son. The one thing I have learned from these boards – is that no two MDS cases or transplants are the same – but it is comforting to be in the company of others that have traveled the same road. We are cheering for you and your husband.April 12, 2019 at 1:51 pm #46495
Good luck Sue on your husband’s transplant. A haplo can be very good because the donor is usually young and hence has healthy and resilient cells.
Day + 6
My husband feels stronger. But his counts never reached the nadir the doctor is talking about.
Day + 7
The doctor gave him Neupogen again. His appetite is good. The stomach issues have subsided. His WBC is still dropping but is still normal at 4.5. His hemo is now 7.8 and platelet is 65. These are low but he had lower counts. At one time, prior to treatment with decitabine, his platelet was only 8. His wbc was. 0.3 and hemo at 7.
Day + 8
The waiting game is still on. We just did 12 laps of our hospital ward corridor. But he is eating well. The water with a little fresh lime juice and salt really settled his stomach.April 12, 2019 at 2:14 pm #46496
Keeping you both in my prayers. Hope you have a good weekend!
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