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    LaurenInLA wrote on Kory's wall

    Hi Kory. I was diagnosed in June of 2018. Best of luck. There is hope.

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    LaurenInLA wrote on Temecula's wall

    Hi Temecula..I have MDS with MPN overlap and was diagnosed on 6/14/18. My best advice to you is to go to a doctor/hospital that specializes in MDS. You can find a list of MDS Centers of Excellence on the MDS Foundation website. My oncologist painted quite a bleak picture. I went to Moffitt Cancer Center & saw Dr. Komrokji. He did a lot of blood testing and he told me the particular gene mutations I have do not affect life span in individuals my age. I have to travel to see Dr. K but it is well worth the drive. My oncologist is willing to work with Dr. K so I see Dr. K twice a year and my oncologist every two months. Best of luck on your journey

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    LaurenInLA wrote on Sheryl88's wall

    Hi Sheryl. I saw that your spouse was recently diagnosed with MDS. I was diagnosed in June of 2018. You are lucky to live in Tampa. I travel there twice a year to see Dr. Komrokji at Moffitt. I hope your spouse is going there. It's an MDS Center of Excellence, one of only two in Florida. There's a blood cancer conference on 3/30 sponsored by the Leukemia Lymphoma Society. There are a number of speakers, one in particular on MDS from Sylvester Cancer Center. If you can make, I think you can still register by calling LLS in Hollywood. It is free and they are serving breakfast and lunch to all particpants free of charge. Dining tables will be set up by disease so you could interact with those who have the same condition. Also google the MDS Foundation. You will find tons of info there are the disease. Best of luck to you

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      LaurenInLA

      Just got back from the conference & I'm disappointed. They grouped us with AML so they didn't address MDS at all. Check out the MDS Foundation. https://www.mds-foundation.org/
      Tons of information there about MDS. I know it's difficult but try not to get too frightened. After my diagnosis, my oncologist had me so worked up that I went to an attorney to get my affairs in order and started to make arrangements for a home for my husband. Then I went to Moffitt and learned I have a mild case; that when the disease is contracted at my age it typically doesn't affect lifespan and that a boen marrow transplant is a cure.

      almost 2 years ago
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      Sheryl88

      sorry the conference was disappointing. I am hopeful, since the hematologist at moffitt doesn’t seem concerned, that his is very early. And that we have nothing to be concerned about, but it is hard.

      I’ll check out that website. Thanks for the info and support.

      almost 2 years ago
    • LaurenInLA's Avatar
      LaurenInLA

      Keeping you both in my thoughts and prayers. Let me know what happens and feel free to reach out if you need to,

      almost 2 years ago
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