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Anniversary of diagnosis

Home Demo forums Patient Message Board Anniversary of diagnosis

  • This topic has 7 replies, 5 voices, and was last updated 1 year ago by lisab.
Viewing 8 posts - 1 through 8 (of 8 total)
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  • #58758

    This message board is a great source of information. It is great to be able to share our experiences with MDS. It is often sad though too. A friend encouraged me to share my happy news with you.
    As of October 17, the day of my diagnosis, I have survived 3 years with del 5q mds. I’m so pleased and thankful for every day I’ve been given.
    My doctor often gives me credit for having done so well. I say it is a team effort. Without his diagnosis and guidance as well as the support of his staff I would not be here. I can’t thank them enough for all they have done.

    Joe Catalano

    What treatments have you received and what treatments are you getting now?


    Been on lenalidimid along with asa 81, folic acid and b12. Been transfusion free for 3 years in November.
    Have had a few minor side effects with lenalidimid small rash that comes and goes as well as some diarrhea off and on.
    I’m maintaining a hemoglobin of 137 to 141 which I understand is between 13.7 and 14.1 in US terms.
    Hope this helps someone else. As I keep saying, we are all different and what works for me may not work for someone else.

    Bonnie Shaffer

    Congratulations! That’s wonderful!



    I’m super happy for you. If we lived closer, I’d give you a big hug and take you out for a Starbucks or smoothie to celebrate! It’s great you have a good friend that you can share things with and have found a caring doctor too. Best wishes for many more wonderful years to come,
    -Stacey, 5q- MDS


    Thanks Bonnie and Stacey
    We are pleased. I never heard of MDS until 3 years ago. It has been a learning experience for my family and I. I hope to be around for another 20 to 30 years.
    I hope that others are as lucky as I have been.

    Lucena Nicolas

    Congratulations and it gives me hope. I too have taken the med you mentioned also know as Revlimed. I was diagnosed Feb 7,2022 started taking Revlimed in March and was doing so well until August. My doctor said that my liver was being severely negatively affected and I must stop taking this medicine. Now I am having to have blood transfusion 2 times a month. Hospitalize 2x for infection. I am having a second biopsy this Monday to see if I need a BMT


    I have always tried to find sunshine even on the cloudiest days. A good attitude helps too.
    My very best wishes go to you. I’m hopefully that you will find the treatment that works for you.

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