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Hi - My doctors believe I have MDS (and it might b...

  • Hi - My doctors believe I have MDS (and it might be because of methotrexate I took for an inflammatory condition). I was wondering about treatments for MDS (is cell damage reparable?)...has anyone has a stem cell transfer? I also have "smoldering" multiple myeloma. I'm in my late 50's.

    Post created 1 year 2 months ago

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  • Tonya, I am 53 and have been

    Tonya, I am 53 and have been diagnosed with osteoporosis, osteoarthritis, diabetes (think it wa s brought on by Forteo). All this was brought on by visiting a doctor with severe pain in my foot. I had three fractures. In a boot, was taken out of boot, new fractures, back in boot, finally into running shoes. I also have Fibromyalgia, Chronic Fatigue Syndrome, Asthma, Fatty liver (brought on from medicines) I have cervical disc issue, and lower lumbar spine issues that have not been resolved. Weight gain (think from Lyrica) I also had a super low immune system and have been old to stay away from sick people. I am currently fighting a bad case of bronchitis that I am having trouble getting over it. I am on my 11th month of Forteo and I have no idea if it is helping. Was told I would have another bone scan after the course is ran. I hope things get better for you. My whole life has been altered. I can't live the way I had in the past. Its a daily struggle to go to store and do household tasks. SS thinks I can adapt to new work. But I don't see how with all these issues dragging me down.

    1 year 2 months ago

  • SCT is usually a 100% cure

    SCT is usually a 100% cure for MDS. I'm 73 years old and did not have a 100% match. My son (who would be my donor) is a 50% match. This is called a haploid-identical match. Most of the larger transplant centers are now doing transplants with haploid-identical donors when the donor is a relative. Also, for older patients, they now do reduced-intensity conditioning (RIC) which means not as much medication to kill the existing stems cells before xfusing the new stem cells. All the doctors were very reluctant to do a transplant. Then I went into remission.

    1 year 2 months ago

  • William you said they think

    William you said they think you might have MDS have you had a bone marrow biopsy to confirm yet? This will also tell what stage the disease is and that will determine line of treatment..I have only had blood transfusions to this point diagnosed Sept 2015 but just had another bone marrow biopsy and may start injections not sure what kind as of yet. I go to MD Anderson in Houston and have started process of SCT by finding a unrelated donor my brother was only a 50 % match. From my understanding SCT is the last resort bc of cost and risks. I was pretty much told at this point in time I'm not sick enough for SCT . I also was diagnosed with severe osteoporosis in Jan 2016 after suffering a compression fracture in my spine. I just try and take a day at a time.

    1 year 2 months ago

  • Interesting. I've never heard

    Interesting. I've never heard of Vidaza.
    My impression is that STC are fairly successful...do you know anyone who's had one?

    1 year 2 months ago

  • I was very close to getting a

    I was very close to getting a stem cell transplant (STC) at City of Hope when I went into remission after three rounds of Vidaza. Everyone is different. You should get your siblings (if you have any) tested ASAP to see if they are a match for STC. You have a one in four chance of a sibling being a match. DO FIND the very best provider who has experience with STCs.

    1 year 2 months ago

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