MDS is a bone marrow failure disorder
MDS is a blood cancer
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Viewing 8 posts - 1 through 8 (of 8 total)
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  • in reply to: Mayo Clinic Rochester #5265
    Barb1962
    Member

    Lolam,
    Yes, my husband is being treated in Rochester Minn. He was initially being treated there for non-hodgkins lymphoma. Then a recent diagnosis of MDS. Doc was still not sure, but wanted another BMB soon. Neil told me that doc should be from “center of excellence” and on that list IS my husbands doctor. Dr. Letendre. If you have any further questions, just ask. I have been satisfied with this doc since 2001. But thats a choice you need to make. He is a very straight forward doc. He told my husband that a BMT was at this time out of the question, chemo was suppose to help a certain percentage before they would do BMT and it hasn’t helped my husband at that percent.

    in reply to: Dad is in the hospital (my heart is broke) #3226
    Barb1962
    Member

    Dear Sad,
    I’m so sorry to hear this, my thoughts and prayers are with you.

    Barb

    in reply to: How he feels……. #3094
    Barb1962
    Member

    He is being transfused today, which Im glad. I am hoping this will pick him up. I have noticed that his platelets have been dropping also. They were a month ago 189 and yesterday was 135. We will see. My husband hasn’t been classified yet, he is 44 years old. Thank you for your replies, I appreciated it very much.

    Barb

    in reply to: Secondary MDS #3183
    Barb1962
    Member

    Hi Kathy,
    My husband was diagnosed with NHL back in Jan. of 2001. He received CHOP, CHOP w/Rituxan (with little change) then received DHAP. Then he later on received Zevalin and a trip to Mexico where he received low dose Chemo and radiation. Sometimes I think the Zevalin was the culprit, but not sure. Some say the CHOP was. He then had his spleen removed in June with good results (but before that NHL was in smoldering stage, so was doing ok. Then his hemoglobin started to drop, in November did BMB and is having another next month (Feb). They are saying he “probably has” MDS, but I think the next BMB will tell for sure. Today he is on his way up to mayo for his first transfusion, hgb was 6.8. So his hgb dropped from 7.8 to 6.8 in a month’s time. Hope this helps, your welcome to email me also.

    Barb@forbin.net

    in reply to: The waiting game has started #3041
    Barb1962
    Member

    I’m so sorry April. My prayers are with you and your family.

    Barb

    in reply to: Centers of Excellence……….. #2989
    Barb1962
    Member

    Doreen?
    You could mention at Mayo if you could have your records looked at by Dr. Letendre at Mayo. I know they have a multitude of docs looking at different cases, but you could specify you wanted Dr. Letendre. He is a very outspoken person, doesn’t mess around. smile

    Barb

    in reply to: Somebody mentioned a nutritionist, his name was… #2511
    Barb1962
    Member

    Thank you Terri,
    I think Dave (husband with MDS) would like to try this approach. Thanks Terri…

    Barb

    in reply to: Happy Christmas news #2464
    Barb1962
    Member

    Carrie!!!
    Oh my……great news! Congrats!

Viewing 8 posts - 1 through 8 (of 8 total)

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