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Myelodysplastic Syndrome (MDS): Did you have stem cell transplant?
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.
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Hope is the key to this taking care of ourselves!
Blessings and continued prayers.
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1 ReactionI 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.
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3 ReactionsHi @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?
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1 ReactionMy 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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2 ReactionsDiagnosed with MDS last September. Seeing Doctors at MDAndersonHouston. They are recommending STC Transplant.Any helpful information would be appreciated.
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1 ReactionHi @jbforet
It's difficult to provide information without more detail.
Have you been given a risk classification? Have they run extended genetic testing, etc? If it's thought that your MDS is likely to progress to AML, then STC may be warranted. However, it really all depends on your specifics.
MDAnderson is one of the leading centers in the US. The only other place you might consider for second opinion would be Mayo. And, yes, in my experience, going out of your way to get that second opinion from Mayo can be well worth it.
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1 ReactionStarted this journey September 2024 low risk . 3% blasts after bone marrow biopsy. 2 months later blasts showed up in blood work 2%. Moved into higher risk category. Both sisters are a match for transplant.
I am 73 in great health workout everyday and golf 4 days a week.
Doctors think I am a great candidate for transplant.
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2 ReactionsGood morning, @jbforet Welcome to Connect, or maybe I should say, Welcome to the BMT/SCT club. There’s a growing number of members in this support group who have had a bone marrow transplant for MDS, AML or other blood cancers and conditions so you’ve popped into the right place for information and encouragement. We’re all at varying anniversaries for the procedure from veterans of 12+ years to newbies with recent transplants. I’m coming up on 6 years this spring and was 65 at the time of my transplant for AML. Now 71, I’m still super active and feel 99% back to normal.
So, being 73 and in excellent health, except for this progressing form of blood cancer, having the bone marrow transplant will give you a second chance at life. The fact that you are healthy and active will help immensely with your recovery.
It’s great that your sisters are a match. That’s one hurdle down. You’re at MDAnderson, which has an excellent transplant center so you’ll be in excellent hands.
I’m posting a couple of discussions you may want to look through where you’ll be introduced to some fellow members in our little club such @katgob, @dwolden @mary612 and many others.
~ Syndrome (MDS): Did you have stem cell transplant?
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
I know this can all feel very daunting. So that’s why I’m here to offer support, along with my fellow BMT/SCT members, whom I affectionately refer to as my posse. We’re open, honest and very welcoming. Don’t hesitate to fire any questions our way.
It’s nice to have contiguous conversations, so the other discussion I recommend is this one where you can join the rest of us sharing our experiences:
~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Is there anything specific information you’d like to know? Do you have a timeframe for your transplant?
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