Stem Cell Transplant – Any tips or suggestions for after

[ptinehoutx]

Hi, my husband was diagnosed with high risk MDS in February. He is about to start his third cycle of chemo and then stem cell transplant next month. They have located a donor and its a 9/10 match. It’s all happening so fast and I want to be prepared for what to expect and how to handle things. They want us to stay near the hospital for 60 days after patient discharge. I would love to hear other stories, suggestions, tips, preparations, etc. Tips on handling a 30 day hospital stay, what to do around the house to make things easier (for both of us), foods, clothing, fluids, exercise. Caregiver tips. Any information would be much appreciated. Thank you.

[Kathleen Till]

I had mine Sept 9th last year in Moffitt in Tampa Florida. I was in for 21 days, then had to find an apartment close to hospital for two months. If you live close, within 15 mins you can go home, otherwise apartment. I was five mins from hospital, which was great as sometimes you have to visit twice a day and at least once a day for over two weeks. It really depends on how much progress you make. I was exceptionally lucky that I did really well and doctor let me go back home after 62 days.Usual time is 90-100 days.
I had a friend look after me during that time.
I. Hospital my daughter stayed with me all the time in my room. They had a sofa bed for her which was very comfortable and they provided the sheets and blankets, she could not leave the hospital because of Covid and I could have no other visitors at all, not even my husband.
The hospital will give you a booklet to read and it goes through everything you might need for your stay.
You have to wash all your clothes after only wearing them for one day, that is the hardest to do, good to take a supply.
The hospital I was in provided other things, like massages in your room, arts and crafts, music recitals and physical therapy.?
You should have been given a lot of this information already. You can call LLS Lymphoma and Leukemia Society and they will give you a lot more info about everything and grants etc.
Hope this helps. There are also some good groups that you could join on Facebook if you use it. I have two that I belong to and lots of advice given there.
Kathy

[ptinehoutx]

Kathleen, thank you for the information. There is so much to learn and know and you just want to do everything perfectly for your person.

Did you have any Host vs Graft issues? How are your numbers now? Were you high risk going in? My husbands doctor made the comment that they always worry the MDS will come back. That totally deflated him. I try to be supportive and positive. What types of comments comforted you when you were going through it?

Thanks again.

[Christopher]

I am also preparing to undergo the Stemcell Transplant. Waiting on my date to be scheduled. (Sometime this July).
My match is a 10/10, so I am hoping that things go smoothly. I will be at Cleveland Clinic, so I qualify to stay at the Hope Lodge there with a caretaker for the “60 days after” rehab.
As for stats:
52 yrs old
Lower Risk
Starting my 8th cycle of Vidaza
As for comments from other people….I have heard of several people I personally know that know a friend or relative that has gone through the procedure and are doing extremely well.
As for it returning…I have not been told this. But, ya know, nothing in life is guaranteed.
Think positive. : )

[ptinehoutx]

Thanks Christopher. I hope everything goes well for you. My husband is considered high risk and on third cycle of decitabine and a trial drug. We just got our schedule and his transplant is scheduled for June 29th.

[Will Bennet]

Hi all. If you are diagnosed in your 60s with low risk MDS and advised to skip a stem cell transplant due to their inherent risk and instead just use the various available treatments, can you still do a transplant 5 years down the road if you’ve run out of working treatments?

I guess it’s a pretty common story on here. You get prescribed a new medication to boost your hemoglobin and it works for awhile. After some amount of time, it seems to lose its effect and you’re on to the next treatment. Rinse and repeat a few times and none of the available treatments are helping much and you’re headed toward needing transfusions because there are no other treatments to try.

So what I’m wondering is whether, at this stage, it is possible to revisit the transplant option that was originally seen as too risky for a low risk patient with a bunch of possible treatments to try? Is there any reason that it’d have been an option initially but no longer after these years? Other basic facts are being 70 and in fine shape until MDS diagnosis. Struggled a lot with hemoglobin and energy level and been dependent on various medications and/or blood transfusions around the times that each treatment stopped working.

Any thoughts would be greatly appreciated.

[Christopher]

Will,
I also toyed with the option of putting off the SCT. No one ever “advised” me to wait though. I was told by multiple doctors that the younger and stronger you are, the better chances of quicker recovery with less side effects. I was also told that each person is different with symptoms and levels and labs. When I was told that this is the only thing that could cure me, I decided to move forward with it. Like you said, the treatments and trials may only work for so long. SCT scheduled for July. 🤞🏻

[Mary Barto]

I’m wondering how you’re doing☀️. Is the rehab manageable

[Author]

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