Will soon have a Bone Marrow Transplant: What can I expect?

Hello, I've been dealing with Low-risk MDS for over 5 years, and at almost 70, feel I'm not able to manage a donor given BMT. I'm being treated at Yale with Azacitidine after 2 years of clinical trial duo chemo pill started to fail. Before that in the beginning it was just blood transfusions, I've had a lot. I'm praying something is on the horizon to help prolong my life, at 69 almost 70 it seems young and I have 2 children just married and a new granddaughter. My biggest problem is no support system, I'm divorced and live alone. Thank you, Kerry

Hi @martetom, how are you coming along on your transplant schedule? Any firm plans yet?

My son had a stem cell transplant 16 years ago...he was 21 at the time. He went through it fairly well. Lots of fatigue, but no real vomiting, he was given medication to prevent mouth sores. He did not complain of pain. He had a few complications, cmv, gvhd, unexplained fever. Luckily the transplant team was on top of all this. Again the fatigue was the worst....He is now 37 and has done well, and considered cured, yay! (BTW, his prognosis was only 3%, he had relapsed in the brain). Just expect to be very tired. Good luck, and keep us posted and feel free to ask questions.

Make sure it’s just regular Claritin, not Claritin-D. He can talk to his infusion nurse or doctor first to make sure he can take it. But it’s pretty standard across the chemo/Nulasta world. I took it the first day and then continued at least a week to ward off any bone pain. It works really well. ☺️. Wish him well for me!

Love the joke so true. Interesting Claritin never heard of that. Will be getting some just in case. Yea he will be back for big hugs that why we are staying away for the big picture. Thanks for conversations

I didn’t realize he just finished a chemo round. Sounds like an injection of Neulasta coming up. Has he had that before? Works great to bring up that white count but if he has some discomfort make sure he takes some Claritin…that helps with the bone pain. I remember my last round of chemo and what felt like forever until the transplant! All I wanted was to stay healthy for that last month! I think that was the only time I actually felt anxious.

No blasts is a great sign! Reminds me of a corny joke between me and my transplant team… Life’s a blast until you find some in your blood. 😅 Limited audience for that humor.

The separation from family is tough but I promise it gets better. It’s crucial during the next few months to avoid infection whether viral, bacterial or fungal, at all cost. He’ll be back to big hugs in no time! ☺️

He isn’t quite in remission yet because his white count isn’t even back to 1 yet so Fri he will receive an injection to help out with that and also platelets and possible red blood cells again. So my concern was that we get the count up and then again knock it back down. Oh his bone marrow biopsy so far didn’t show any blasts. But we do have almost 3 wks to go. The hardest thing about all this is that are kids and grandkids are 4 hours away and we were able to see at thanksgiving but not since because of all the crazy stuff out there. FaceTime a lot.

Oh I really hope everything goes well for him this time. It may be different for him because he’ll be in better starting position, having gone through chemo before and in remission right now.
Keep me posted, ok? Give your husband an ‘air hug’ for me! No germs. 🙃

We are about 30-40 min and they are going to let us try and do the pre transplant chemo as an outpatient especially since he had such a horrible experience with the hospital during his infection stay. He will be staying in the hospital after the transplant though for closer monitoring.

I’m so happy he can go through with the transplant! It is daunting to face this with the unknowns. But it is also an opportunity for a second chance at life.

For me, it was my only option and I would not be here now if I hadn’t gone ahead with bone marrow transplant. I feel amazing and just passed the 3.7 year mark! So I’m a cheerleader now for anyone about to undergo this unique journey.

If you have any questions at all, please don’t hesitate to pop in here! There are several of us who have had allogenic stem cell transplants and can fully appreciate what your husband and you are going through. The life a caregiver isn’t easy either. ☺️

Do you live near the clinic which will be doing the transplant? Are you all set with lodging?