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Old Mon Aug 5, 2019, 08:42 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 583
Taking out the port sounds like an unusual move just because ports are so much easier to access blood work and do infusions, etc. But the sluggishness of a haplo transplant getting to full production seems consistent with what I think I know. I can tell you that i am 5 years out and still don't consistently have normal wbc and platelets on a regular basis. I do have chronic gvhd which is the normal scapegoat.

I usually fall in line with ask lots of questions, but trust thead my hat it is not in a doctor's interest to mislead or lie to a patient and their family. This move is probably an overall neutral sign, especially since there aren't any mds cells present

Also, I had my ports removed to reduce infection risk. Merging was a tri fusion.
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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