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high risk MDS

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This topic contains 11 replies, has 6 voices, and was last updated by  Cecile Huston 2 months, 2 weeks ago.

Viewing 12 posts - 1 through 12 (of 12 total)
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    Posts
  • #36739

    Cecile Huston
    Participant

    I have high risk MDS caused by chemo/radiation for breast cancer in 2000, I am on a clinical trial of 2 chemo treatments in the 28 day cycle and 7 vidaza in that same period, my MDS from the last BMB is in remission. I have been in treatment since June 2017 so 126 chemo treatments since I started and 6 BMB, my question is as long as I stay on treatment and it works, I wonder how long is the longest anyone has been on Vidaza? It also upsets me that women who have breast cancer and chemo/radiation or the mens treatment are not told they can get MDS in later years.

    #36740

    Sherry Pratt
    Participant

    I was told 5 years on Vidaza. I would get a second opinion. Email if you want to discuss in detail. Pratt8075@aol.com

    #36741

    Wendy Brizer-Maciol
    Participant

    I know someone who has been on Vidaza for 8 yyears. It is a friend, as my father was on for 113 months.

    #36749

    jennifer clark
    Participant

    I have MS in addition to MDS so am on reduced dosage Vidaza, 2/3 of normal dose. I have just completed my 31st round of 5 days every four weeks. it keeps me clinically stable, although they keep warning me that being severely neutropenic I could die from infection, chemo stop working, converting to AML, etc. I had bone marrow read by my local hospital, Mayo and Georgetown, two with dire results, Mayo readings said other two wrong and I’m still RAEB1. Georgetown oncologist said consider myself lucky to have made it this long, get ready. I just keep on keeping on, who knows???

    #36750

    Cecile Huston
    Participant

    My heart Dr. said he knew a patient that had been on Vidaza for 10 yrs, I am on no other meds, just the chemo so will continue as long as it works, I am RAEB 1 WITH COMPLEX CYTOGENETIC, RIPS: 6.5 very high risk,SO I will take one day at a time as I do, if I quit treatment or it quits working, they told me I would either go into AML or get an infection. thanks everyone for you info.

    #36753

    Wendy Brizer-Maciol
    Participant

    Sorry, my father had 13 round of Vidaza.

    #36764

    Tereze Gluck
    Participant

    Hi Cecile. I also have high-risk advanced MDS, chemo-related. I am 72years old so I don’t see any advantage in treating for a year or more when ultimately I will have to have a bone marrow transplant. I’ll just be that many years older and sicker.

    You don’t mention your age, ut I think that plays a part in your approach. If you’re young or middle-aged you have time to run with a treatmentand still get a transplant if the treatment stops working. If you’re around my age, you might go for the transplant sooner rather than later.

    #36800

    Cecile Huston
    Participant

    Hi Tereze, I am 75, and they do not recommend a BMT for me at my age, the treatment is very hard and risky for those older. The Vidaza seems to be working great for me so I will take it as long as it does. I feel at 75 I don’t want to be in the hospital for weeks on end after BMT and I have discussed it with those who worked at the hospital where it is done and I just feel I can’t tolerate all one has to go through to have it done. For some an option but not me, I do everything I want to right now, garden, housework, estate sales and sell on ebay, I do tire easily and have to stop to get my breath, BUT that is ok with me, not sure what is old age, MDS or the chemo. One day at a time. Life is good.

    #36801

    jennifer clark
    Participant

    I’m on my thirty-firstst round of Vidaza and I’m clinically stable so far. BMT not recommended for people my age (76), brutal and not effective.

    #36806

    Donna
    Participant

    Hi Cecile………..I am 73 and I think I feel the same as you about BMT. It is very involved. I’m happy for you that your chemo is working and you are enjoying life.
    Donna

    #36807

    Tereze Gluck
    Participant

    Cecile, I know two people my age who handled the BMT very well. But vidaza could never give me more than two years, and that’s not enough for me. I feel my only option is the BMT. It’s a brutal procedure, but on the other side lies , I hope, getting to see my granddaughter grow up!

    #36808

    Cecile Huston
    Participant

    thanks all of you for your input, this MDS varies so much from one person to another, we just have to find what works for us, I have another BMB next month, will be my 7th so will see if I am still in remission, pray that is so. Thursday I finish my 14th cycle of Vidaza so onward we go. Good luck with whatever way you go on your treatment, they say as long as the Vidaza continues to work for me, I will stay on it. My husband is in poor health but so good with going to the treatments etc with me, and with much discussion with the Dr’s and nurses and family this is the route I will take.

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