MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

BMT or Not

Home Demo forums Patient Message Board BMT or Not

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • #11155
    Charlie G
    Member

    I was diagnosed with MDS in 9/05. I have a brother who is a match for BMT and am presently scheduled for same in late Jan.. My blood test this week shows all three lines above levels at diagnosis (WBC 3.4, HMG 12.8, P 67). I am seeing people in the forum who have lived for many years with these kind of levels not changing much. My blood levels at diagnosis were (WBC 2.9; HMG 11.7, P 57, Blasts 16%). I am feeling fine and don’t have any physical limitations to speak of. Am very interested to hear from anyone with experience similar pro or con.

    #11156
    Jimbob
    Member

    Charlie,
    Getting BMT or SCT is a very personal decision and you have to cnsider all of the pros and cons. You currently have at least three big plusses in your favor that could disappear. You have a good match from a related donor and are otherwise in good health and feeling good. Added to those is you are not excluded from getting a BMT because of age or any other complications and it is not a matter of emergency, yet.
    As far as negatives go: your quality of life may be better now than it could be for a while after even a very successful transplant. And another major concern: not sll transplants are successful.
    The best advice I can offer is: Continue to gather information and make sure the transplant team is the best available and pray about the decison.
    Jim

    #11157
    Suzanne
    Member

    Again A BMT has to be an individual decision.It certainly has some risks. I would go more by a BMB test result then an individual CBC. If you have RAEB-2 diagnosis you must have a significant blast level. Are they holding? going down (Wouldn’t that be fantastic!) or increasing?)Just in the marrow or also out in the blood stream? What are you doctors saying about any increased risk with increased age or progression of the disease for you. Are you dealing with a team with lots of experience and success? What are they advising in the wait or go decision? Just some questions that are probably already on your mind. Things can move from RAEB to AML very quickly , with no warning and no one can predict how quickly as far as I know.

    #11158
    g-masews
    Member

    To do or not to do…that is the question. My husbands doctor encouraged it greatly because my husband has complex abnormalities (3 or more) and an IPSS of 2, which gave him 6-12 mos. That was a year ago and he hasn’t even had a headcold since then. He does not want a BMT which may make him much worse off even if he survives. He is 55. You are older, Charlie, and might not have many years to wait on that decision, but one thing that should be considered is your chromosonal abnormalities and %of blasts. My husband has no blasts but has the trisomy 8 which can become leukemia quickly. Now his doctor recommends only a mini transplant if he is willing. Right now he is opting for every healthy day to enjoy and who knows which decision is the best? Wish there were easy answers. By the way, his levels are WBC 1.0, Rbc 12.0, Platelets 50-60. Suffers no effects from any of these.When he was first diagnosed, it consumed our every thought and we felt we had to make all these decisions right away. Now, we hardly think of it at all, and I’m glad we didn’t jump into anything too quickly. But you and your doctor and family are the only ones to decide.

    #11159
    Dennis
    Member

    Chuck,

    I’m on Vidaza, and responding well, but as soon as they get a donor, I’m going ahead. I don’t want this MDS in my body at all — if there’s a chance of getting rid of it, I’ll take it.

    You do have to weigh all the options — but without the vidaza, I’d be on a short road to glory, and they can’t tell me how long I can count on it.

    Dennis

Viewing 5 posts - 1 through 5 (of 5 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert