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#1
Sat Jun 6, 2015, 12:55 PM
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3 cycles of Vidaza & Fungal Pneumonia
Hi Everyone,
Was doing fine on Vidaza however no neutrophils and very low WBC for a couple of months. Bang I came down with an E.Coli blood borne infection followed by fungal pneumonia. What a ride physically and emotionally. Here I am a month later still on anti-fungal meds feeling much better. My haemotologist however, has suspended Vidaza till at least the end of this month to allow me to rebuild. Blessings as have been away from home for 4 months and the return is so sweet. Blood count numbers seem to be stabilizing although on the low side. Plan presented is umbilical cord stem cell transplant in early fall. Unrelated donor match 9/10 but he is thinking the cord transplant match seems like a better possibility. They are currently doing the genetic testing. Anyone on this forum had a cord SCT? Carole Nanaimo BC CANADA 
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#2
Sat Jun 6, 2015, 02:41 PM
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I am sorry to hear about the fungal pneumonia, but glad to hear that you are recovering. I faced that one about 5 years ago and spent 7 days in the hospital recovering. It is pretty brutal.
I did not have a cord blood transplant but have met several people who have and did pretty well through the procedure and following periods. The immune suppression and conditioning regimens are a little different There are a couple of advantages of the cord blood transplant in that the cord blood is a little more flexible, tends to have lower rates of gvhd which is also more responsive to treatment, and mismatches aren't as important. Cord blood may also be faster to obtain as it does not require any scheduling with the donor. There are of course downsides to cord blood transplants. Here is a link to a comparison page: http://www.nationalcordbloodprogram....omparison.html Good luck moving forward into transplant.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#4
Wed Jun 10, 2015, 12:45 PM
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Low Platelets & Shark Liver Oil
Tried to look back at threads with respect to Shark Liver Oil, but guess am computer challenged.
Anyone have any experience with this and dosage required to stabilize platelets? with gratitude Carole
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