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Myelodysplastic Syndrome or MDS

Odeal59
Odeal59 CSN Member Posts: 1
in Rare and Other Cancers #1

My husband, Rick, was diagnosed with myelodysplastic syndrome (cancer) almost three weeks ago. It is hard to wrap my mind around it. He has RAEB-1, with trilineage dsyplasia. For a long time, we have dealt with a blood disorder, thrombocytosis - a myelproliferative disorder. He has way too many platelets if not controlled by Hydroxurea. Well, he is off the that medication now, and has had six days of Vidaza instead. We are familiar with the inside of a hematology/oncology doctors office.

It seems like this has happened so quickly. But since he has been monitored for this other blood disorder for 22 years, it was caught at RAEB-1. I have been doing a lot of reading on this subject, as would be expected. This is depressing. Most patients with this type of cancer, at this classification die within two years. The only "cure" is a stem cell transplant. The process of getting a stem cell transplant and recovering from it for MDS patients seems quite difficult, with the risk of death quite high, and the survival rate after transplant not that great. They are, I am sure, improving this all the time.

At this point, he has been schedule for six cycles of Vidaza, and weekly labs.

I don't know how this process is going to work out. I have a lot of questions. Some of which are related, but not related to the cancer itself.

Cindy

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Comments

  • NoTimeForCancer
    NoTimeForCancer CSN Member Posts: 3,601 Member
    #2
    Cindy, I am sorry I can't

    Cindy, I am sorry I can't offer you any insight to the fight your husband is facing, but a dear woman who posted here always said, "you are a statistic of one".  That holds true for your husband.  My prayers are with your family.

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  • Hatmaker510
    Hatmaker510 CSN Member Posts: 3
    #3
    MDS - my husband was just diagnosed as well

    Hi Cindy, Although I can't offer you much information, I wanted to reach out to you and see how you and your husband are doing.  If we can talk, please feel free to reach out.  This is a very rare syndrome and there aren't many of us out there with it.  We just had our first appointment yesterday at Moffitt Cancer Center.  It hit us like a ton of bricks. 

    Know I'm here for you.   HAT

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