Anyone chosen to do chemo with HMA (vidaza) before transplant (BMT)?

I was diagnosed with MDS in June this year when my Hg dropped into the 8s. My Dr put me on Vidaza and warned me that there was a good chance that the numbers would go down before they improved. That surely happened and my Hg dropped like a rock to 6.6 and over the next few months I received 4 transfusions for a total of 5 units of blood keeping my Hg between 7.4 and 8.2. Neutrophils also dropped to .2. After 4 cycles of Vidaza the doc and I both felt that the Vidaza wasn't working and he gave me a referral for a BMT. Amazingly, after the referral over the following 3 weeks, Hg shot up to 11.1 and Neutrophils to 1.2! Platelets have dropped to 60 tho. I have a consult for the BMT later this month to figure out what's next. Good luck!

@johansenrj
Thank you for your response. That is great about your numbers increasing. Looks like the vidaza may workout. I just had my BMT consult this week and I'm trying to decide which way to go. Whether to start the chemo treatment or go straight to the BMT. Its a hard decision to make. I hope your numbers continue to rise and the vidaza keeps working for you.
And Merry Christmas to you and your family!!

@turbo65 all I can say is you are still young enough to have a stem cell transplant. Grab the chance and go for it. My husband is 81 and was diagnosed with myelofibrosis, to old for stem cell transplant he would love to have a chance like you have. Vidaza didn’t work for him his myelofibrosis is progressing. He has had 86 infusions of platelets. It is like we are living in a nightmare with no way to turn. Take the chance. God bless. I’m

@turbo65, it is a hard decision to make. Did your care team outline the pros and cons of each choice with and without chemo prior to BMT? What and how did you decide?

@johansenrj, have you had your BMT consult? What's next?

Yes, I had a really good meeting with Dr Chhabra on Dec 26. Now waiting to hear from the patient coordinator.

I'm going through the assessment for the transplant. They found i had a small blockage in my heart, but the platelets are too low to have a stent put in. So they are continuing with a few more test on my heart. They found a donor, but while during the assessment I was told they had dropped out. So they said they could use my daughter. Then recently they said they want to use an unrelated donor due to my daughter's age. She is 44. I've read unrelated donors may cause more complications. Has anyone had a transplant using a unrelated donor? If so, how are you doing?.

@turbo65 Hi Crystal, I’d hazard a guess that the majority of us with an allogeneic transplant had MUD donors…meaning Matched-unrelated. The advantage is that receiving blood stem cells (cells that mature into blood cells such as red/white/platelets) from an unrelated donor is that the cancer cells will again be recognized by your new immune system. Your old immune system is compromised and in some instances unable to effectively rid your body of cancer cells. In fact, some blood cancer cells can trick the immune system into ignoring them. We have cancer cells in our body all the time but usually the killer cells of our immune system scrub these offenders before they get a foothold. Anyway, having someone else’s immune system gives you a fresh beginning.

If there are no alternative unrelated donors and your doctor uses your daughter’s stem cells it is still fine! However, as people age they may accumulate acquired genetic mutations thereby having the risk of importing undesired traits. Women who have been pregnant can create antibodies in some cases, but it does not automatically disqualify a potential donor.
Your doctor is just looking for the closest match to you. Either way, daughter or MUD, the transplant doctor will try to match you and the donor as close as possible. It’s not done with blood type at all. It is a process of matching HLA proteins. Most try for a 10/10 match.

I’m coming up on 7 years post MUD allo-transplant. I recently turned 72, feel fabulous and as a matter of fact, about 10 minutes ago got back from a 5 mile beach walk!

There are many of us in the forum who have gone through similar BMT journeys. Some members had been diagnosed with MDS, others like myself with AML and various other blood cancers. The BMT has given us a 2nd chance at life.
@katgob had her transplant for MDS and will be celebrating her 2nd re-birthday soon. Kat and other members have shared their stories in a discussion I started a few years ago.

My BMT story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
This is not an easy journey but it all goes as anticipated it can be the gift of a lifetime…a second lifetime!
Are you nearby your transplant center or will you have to relocate?

@loribmt
Thank you Lori for your information about MUD transplant and your journey experience. I'm about 30 minutes away from my transplant center. I'm excited and worried all in one.

@turbo65 Hi Crystal, it’s understandable to be on a rollercoaster of emotions with your upcoming BMT. The logistics alone can be daunting. But everything seems to fall into place in an orderly fashion and once you’re admitted, at least from my experience, I was just on auto-pilot. I trusted my doctor and my team with my ‘care and preservation’ and let the worrying to them. (And my husband as my caregiver).

I recently replied to another member about to have a stem cell transplant using her own cells for a different type of blood cancer. While your experiences, along with recovery won’t be the same, the list of items I posted for long term stay will…so here’s the reply (cut and pasted) ☺️ https://connect.mayoclinic.org/comment/1486625/

Do you have any specific questions I can help you with?