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Old Wed Nov 22, 2017, 09:16 PM
sundco sundco is offline
Join Date: Nov 2017
Location: boulder creek, calif
Posts: 2
Unhappy how do i post a question for all MDS groups?

I want to know if any MDS patient has had open heart surgery to replace an aortic valve and been successful. My platelet count is under 50K with stage one. How do I post this question? Your site seems to have no way for me to start a new thread for this subject or ask the general question of all MDS subscribers
What is the procedure. I registered properly. HELP
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Old Thu Nov 23, 2017, 11:08 AM
Marrowforums Marrowforums is offline
Join Date: Jul 2006
Posts: 910


Click here to start a new thread in the MDS forum, or go to that forum and click the New Thread button.
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Old Sat Nov 25, 2017, 09:34 PM
lisa3112 lisa3112 is offline
Join Date: Jun 2016
Location: Melbourne
Posts: 105
Good question. If you need a new valve the medical staff should be able to manage your bloods with both the cardiac surgeons and heamatology. If you get a mechanical valve patients generally go on blood thinners so you dont have clots. But as your platlets are low, heam will probably advise the surgeons what meds to use. I personally dont see why you couldnt have the surgery... Depending on your age, other risk factors and how damaged the valve is.
On a side note, where I work they do trancatheter aortic valve implantations on elderly patients who might not recover well post surgery. So they can do implants through the groin. But yes depends on your case.
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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Old Sat Mar 31, 2018, 11:16 AM
dchurchill49 dchurchill49 is offline
Join Date: Mar 2018
Location: New Smyrna Beach, Florida
Posts: 1

I had oe 5 day treatment November 2017. I stopped treatment as my hematoligst told me it was not chemo. I got a second opinion from Mayco Clinic and they told me I should never agree to treatments unless I have another bone marrow biopsy. which I will May 2nd.
My blood nembers have gotten worse after this treatment of Vidaza. My question if how long will it take for my blood to recover?
Dianne Churchill
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