MDS is a bone marrow failure disorder
MDS is a blood cancer
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Viewing 15 posts - 1 through 15 (of 68 total)
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  • in reply to: iron overload, nonhereditary or transfusion related #54412
    Sherry Pratt
    Participant

    Hi Phil, Sherry Pratt here. I too had side effects from chelating drugs. I now take Lactoferrin. It was recommended by my naturopath at my treatment center. It brings the iron level down slowly but surely with no adverse effects.

    I get them from Life Extension on line.

    • This reply was modified 2 years, 11 months ago by Sherry Pratt.
    in reply to: MDS 5Q- with mutations #49948
    Sherry Pratt
    Participant

    I would go for a second opinion at a center of excellence. Somewhere we’re they have a track record for handling blood cancers.

    in reply to: chimeric stem cell transplant #49914
    Sherry Pratt
    Participant

    Len,
    I had an allogenic stem cell transplant 3 Jan 2017. I am now what they call a Chimera. My body contains 2 sets of DNA. Mine that is leftover in my saliva, nails, teeth and my donor’s (my sisters) which is the majority of my DNA now. I have not heard of the term Chimeric stem cell transplant, but this is what I know about becoming a Chimera after transplant. Hope this helps. If you need further explanation, you can email me at pratt8075@aol.com

    in reply to: Rivaroxban aka Xarelto and Platelets #49777
    Sherry Pratt
    Participant
    in reply to: MDS to AML question ?? #49769
    Sherry Pratt
    Participant

    This sounds a little off to me. I would get a second opinion right away. I have no experience with AML personally, but Inwould either request an appt with this doc to ask him in person or get a se one opinion at a center that specializes in MDS. You can email me if you would like at pratt8075@aol.com

    in reply to: Dacogen #47444
    Sherry Pratt
    Participant

    The drug made my blood lines , all 3 go very low. Had neutropenia for about 35 days. I took 2 cycles if it. Then went into transplant…..but remember everyone is different.
    Pratt8075@aol.com

    in reply to: My Husband with MDs and now back in FL #37263
    Sherry Pratt
    Participant

    Rose,
    Plese email me at pratt8075@aol.com
    Sherry

    in reply to: Concerns about bone marrow transplants #37242
    Sherry Pratt
    Participant

    I had a transplant at 62. I had RARS too. I took Revlimid. It did not help. I also had 2 rounds of Dacogen and it did not help much. Had the transplant Jan 3, 2017. I am doing extremely well. My sister was my donor and a 100% match. I am very blessed. I have written a book about my journey but it may not be out til Dec. If you want more details please email me at pratt8075@aol.com.

    in reply to: Question about possible MDS related issue #37238
    Sherry Pratt
    Participant

    Deborah,
    Typically MDS does not spread. It can morph into Acute Myeloid Leukemia if gone unchecked. In some fields of thought MDS is considered a pre-cancerous condition and not even called cancer. I am not a doctor, but that is what I have researched. Prayers for you and your mom.
    Sherry

    in reply to: New, Scared, Questions #37027
    Sherry Pratt
    Participant

    Bryan,
    On my our second BMT you said they said you have MDS. There are several sub-types of MDS with all having different treatment protocols and outcomes. I.e. my particular MDS diagnosis was RARS-Refractory Anemia with Ringed Sideroblasts. Your doctor should tell you what subvtupe you have. Are you treating at a center of excellence in blood cancers? A second is always the best in MDS. In my experience, by what you have described, this is not mild MDS. Sherry(pratt8075@aol.com)

    in reply to: Bone Marrow Transplant #37024
    Sherry Pratt
    Participant

    In my experience, Cancer Treatment Center of America.
    It is near Chicago. Zion, Illinois. They saved my life and I gained more than a new life there. I gained a whole new family that I love now. Real geniuine people as well as top notch physicians and all staff who truly love what they do. Their main focus is YOU. The Mother Standard of Care in those facilities is unlike anywhere on this planet. That in itself facilitates healing. Pratt8075@aol.com

    in reply to: My son with MDS #36963
    Sherry Pratt
    Participant

    Vera,
    Your son has his age on his side. You are going through the worst part now. Do everything in your power to keep him germ free (from others) and it will allow his immune system to recover using his sisters cells and not having to fight off an infection too. I am 19 months post transplant and doing well. Always look towards the other side of his recovery. If you want to talk in detail email me pratt8075@aol.com

    in reply to: Procrit then Vidaza-nervous #36936
    Sherry Pratt
    Participant

    A transfusion will help you feel better. Where are you being treated? I would go for another opinion.

    in reply to: Dacogen not working #36904
    Sherry Pratt
    Participant

    Rita,
    Where do you live?

    in reply to: My Dad’s MDS progressed into Leukemia #36811
    Sherry Pratt
    Participant

    Raghda,
    Please tell us your Father’s name and age. What specific type of MDS did he have?
    Sherry
    Pratt8075@aol.com

Viewing 15 posts - 1 through 15 (of 68 total)

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