Who do only 5% opt for transplant?

[sbk007]

I think your doctors concern is that what you have now doesn't follow the flow chart that leads to SCT. You didn't mention the type of MDS or what the actual diagnosis was. Keep in mind the BMT might not cure the Tinnitus. As Birgitta mentioned Its best to see an MDS specialist or Transplant specialist if you haven't seen an MDS specialist that sees many MDS patients, they're usually at academic hospitals or research facilities like Mayo where you were but not always(you mentioned you switched Dr's.) . I hope with the right doctors you can find an alternative to a BMT. If they can get your hemoglobin up further than a transfusion can that might give you more energy and provide relief from the Tinnitus. The thing about Tinnitus is many people that don't have other health problems have it.

[Chirley]

Just to let you know you're not alone with the tinnitus. My tinnitus gets worse before my copper infusions are due and slowly improves the week or two after my infusions. I only get the tinnitus in my right ear, which is supposed to be unusual so I've recently had a CT to make sure I don't have a neuroma and luckily it was clear.

Good luck with the MDS, it's better than some diseases.

[writer]

Thanks for your input. My last iron profile indicated I'd need to start the chelation with my next transfusion (which I swear isn't soon I'm just going to SCREAM!) I feel like a goldfish lying on the floor gasping for breath sometimes.

As to Chriley's comment - I feel it will most likely cure the tinnitis. In December I had 3 units transfused. My tinnitis subsided to almost nothing afterward. Then as my HGB began to drop again it came back to the same extent it has always been. My MCV was almost in the normal range on my CBC - of course my RDW was through the roof!

I'm at Mayo Clinic but I'm quickly losing faith.

My MDS was diagnosed from a bone marrow done in December - is a very unusual form in that only my RBC's are impacted. My platelets, Lymphs, and Neutrophils (Segs) are all normal and I have a wonderful immunity.

I just feel frustrated when I get to this point in thing where I need blood but my HGB is only 0.1 grams below my established transfusion level.

[Birgitta-A]

Hi writer,
I am surprised to read that the doctors at a Mayo Clinic don't let the patients decide their transfusion levels - that is old fashioned. We are all different, our hearts function differently and so on. That means that the patients feel when they need txs to get the best possible quality of life.
Kind regards
Birgitta-A

[kris]

Writer,
What is your H/H pre and post transfusion? Yes, living with MDS can be very frustrating. But if your frustrated now I don't see you dealing with the days, weeks and months of GVHD or other issues caused by the medication you will need to take after a SCT.
Supportive care:transfusion dependency and cleation therapy for as long as possible and watch and wait isn't the worst thing.
I suggest you really TALK and READ about the true experience of SCT. It is not a panacea. My husband is 30months out. He is finally back to the strength and vitality he had 10 years ago. His experience was a walk in the park compared to most and we know it. Often with SCT you are trading one set of medical concerns for another set of chronic life issues ranging from annoying to life threatening. He did not go into SCT lightly. We knew the odds of long term illnesses and possibility of death. But when all three lines are finally affected, Hgb 4-6.0 and other comorbidities are starting to set in then you know you need to roll the dice.
I am sorry you are so frustrated.

[kris]

My husband was fortunate enough to have a sister and a brother 10/10 match.
One center told him they would not consider testing much alone transplanting his sister. Another said no worries. After looking at everything the Dr decided to use his sister rather than brother as they both were CMV negative and his brother was positive. So one never knows. Sometimes you need to be sure you are being treated where they see many MDS patients and do many successful transplants.
Having a Dr you trust, can engage in open dialogue and can work with is very important. Also compliance on your part is HUGE!

Good Luck in the future.