Myelodysplastic Syndrome (MDS): Did you have stem cell transplant?

Posted by kjjjrader @kjjjrader, Nov 8, 2019

I am a caregiver for my husband who has recently been diagnosed with MDS. He has MM which he was treated for with a stem cell transplant using his own cells in January of 2018. He did 18 months of Revlimid post transplant as maintenance. His counts always were low once he started treatment and he had three incidences of pneumonia in those 18 months. The last time was September 2019 his neutrophils dropped to 300 and his hemoglobin (9.3) and platelets (83) also dropped. None of his counts recovered very quickly so they did another bone marrow biopsy and discovered the MDS. His MM is in remission but they discovered MDS. With the new diagnosis of MDS he no longer takes revlimid.

My question is, are their other people on connect who have gotten MDS from treatment or even have MDS? How long have you had MDS and are they monitoring it or have you had a bone marrow transplant with donor cells? And how was the transplant? We have lots of questions. So any answers would be helpful.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

mkt24 | @mkt24 | Mar 31 3:15pm

Hope is the key to this taking care of ourselves!
Blessings and continued prayers.

ldl1 | @ldl1 | Jun 16 3:23pm

In reply to @hklass "Is there nobody with MDS out there? I really need to contact someone who has been..." + (show)

I have MDS and was being treated with Azacitidine. I tolerated the medication very well, and did well until my wbc count kept dropping. The treatment is on hold, and I am getting ready for transplant in 1-2 months.

Lori, Volunteer Mentor | @loribmt | Jun 16 3:53pm

In reply to @ldl1 "I have MDS and was being treated with Azacitidine. I tolerated the medication very well, and..." + (show)

Hi @ldl1 Welcome to Mayo Connect! We have several members in the forum who have had an Allogenic stem cell transplant for MDS. Some forms of MDS can progress to a more aggressive form of leukemia called AML. A bone marrow transplant is the only potential cure for these conditions so your doctor is recommending that you have this done now, while you’re in a period of remission.

We have a fairly active support group in this current discussion link below. I started it a few years ago after my bmt for AML. I’m now coming up on 5 years post transplant in just a few days. There are so many encouraging stories I hope you’ll read some of them and join us there. @katgob just had her SCT for MDS, 67 days ago and has been updating her story for us on a regular basis.
Here is the link:
My bone marrow transplant story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

Do you have any questions about the transplant?

dwolden | @dwolden | Jun 27 8:12am

In reply to @hklass "Is there nobody with MDS out there? I really need to contact someone who has been..." + (show)

My husband was diagnosed with MDS in November 2023. He was referred for stem cell transplant which we are still waiting for. He started treatment with vidaza in December and has completed six cycles. His blood numbers were extremely low during the first four months of treatment and he was transfusion dependent for at least two months. Venetoclax was added to the treatment regime for the fifth and sixth cycles and his blood numbers have improved enough so he hasn’t needed transfusions in six weeks. It has been a very challenging time and we hope to move forward to stem cell transplant and its potential for cure very soon.

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