MDS treatment options other than bone marrow transplant

Posted by garyrp @garyrp, Apr 23, 2018

I have been diagnosed with MDS and bone marrow transplant is not a option. What are some other treatment options?

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@garyrp, I apologize for my delayed welcome to Connect. If you don't mind, are you comfortable sharing a bit more about your MDS diagnosis and why BMT is not an option. I would also like to invite @dell060969 who discussed taking medications for one of the MDS diseases. @garyrp, how are you feeling and have your providers discussed any other options for treatment?

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@JustinMcClanahan

@garyrp, I apologize for my delayed welcome to Connect. If you don't mind, are you comfortable sharing a bit more about your MDS diagnosis and why BMT is not an option. I would also like to invite @dell060969 who discussed taking medications for one of the MDS diseases. @garyrp, how are you feeling and have your providers discussed any other options for treatment?

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Dear All,
I recently joined this group and am grateful to all for your personal info sharing on ET and related other topics.
Thank you

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@JustinMcClanahan

@garyrp, I apologize for my delayed welcome to Connect. If you don't mind, are you comfortable sharing a bit more about your MDS diagnosis and why BMT is not an option. I would also like to invite @dell060969 who discussed taking medications for one of the MDS diseases. @garyrp, how are you feeling and have your providers discussed any other options for treatment?

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Awaiting bone marrow biopsy for low cbc an low platelets so diagnosis appears to be mds wat are my treatment options I feel good with no symptoms so far thanks

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@tyson1221

Awaiting bone marrow biopsy for low cbc an low platelets so diagnosis appears to be mds wat are my treatment options I feel good with no symptoms so far thanks

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Hi @tyson1221 You’re wondering what your treatment options might be for low platelets besides a bone marrow transplant. That’s not really a question that can be answered at this point. It will depend on the type of platelet disorder you have and your symptoms.
Right now you’re really in a great position, not feeling any symptoms. But it looks like your doctor is being pro-active in trying to find the possible cause for your continued dip in platelets.
I think we first chatted back in November about your low platelets and with your doctor wanting a bone marrow biopsy. That’s 3 months ago, so if you are still experiencing the dip in blood levels, it’s a good idea to follow through with that biopsy. That will give your doctor a good overall picture of your bone marrow health and possibly why you’re having the platelet issue.
Do you have the biopsy scheduled?

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Yes thanks for getting back to me bone marrow biopsy in 2 weeks an all my levels are low so he thinks may be MDS disorder will know for sure after test just tryin to be proactive on best treatment options people have had thanks 💪😎

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@tyson1221

Yes thanks for getting back to me bone marrow biopsy in 2 weeks an all my levels are low so he thinks may be MDS disorder will know for sure after test just tryin to be proactive on best treatment options people have had thanks 💪😎

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Well had bone marrow biopsy today so waitin for results in few days will be lookin for treatment options probly for MDS 🤔😂

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@tyson1221

Well had bone marrow biopsy today so waitin for results in few days will be lookin for treatment options probly for MDS 🤔😂

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I took Revlimid for my MDS. It brought my hemoglobin up to where it's suppose to be. Very very expensive, though, but I got funding to help.

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Hey thanks for info all my levels are low so hopin there is medical treatment for complete blood counts not just hemoglobin glad your doin better👍😎

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I am a 31 year stage 3 multiple myeloma survivor, 11 years ago I was diagnosed with MDS, and my local transplant hematologist advised treatment. Instead, we went out of town for a 2nd opinion and were advised to wait and monitor my blood, which I chose to do. In 6 months, The MDS evolved into treatment-related AML, requiring an allo transplant to survive. I was 64 and it was my 4th SCT, but it put me in remission, where I am today, a decade later.
Search YouTube patient 007 myeloma to hear this 9and several other lessons learned and strategies. Each episode is 4 minutes.

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Great to hear your journey an success so you had the transplant could I ask how tuff was the treatment ie removing wat you had left an who was your donor an wat hospital did you use thanks howard

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