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Transplants Bone marrow and stem cell transplantation

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Old Mon Aug 5, 2019, 05:46 PM
shadowii shadowii is offline
Join Date: Apr 2019
Posts: 44
Whites still going down

Welp his red is still stable by white stem cells went down again.
So for the first time he got a transfusion (white blood cells)
The doctor says that with haplo (since this is no longer haplo cord) the bone marrow can be sluggish in kicking in and that there is no cancer in his bone marrow.
On the other hand I don't know guys, he's getting the port taken out tomorrow and I wonder if that's jumping the gun.
Be straight with me what does this sound like to you guys.
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Old Mon Aug 5, 2019, 09:42 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 587
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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Old Mon Sep 16, 2019, 07:17 PM
shadowii shadowii is offline
Join Date: Apr 2019
Posts: 44
welp his six month biopsy is Monday
his rbc and platlets are going up but wbc is still going down, not sure what that means
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Old Thu Sep 26, 2019, 07:06 PM
shadowii shadowii is offline
Join Date: Apr 2019
Posts: 44
Welp the good news Is that he still has no cll or mds, bad news is his counts keep going down so they are going to do a lot of different things but cant deny the possibility that he might need a second transplant.

They say its not graft failure but the stem cells just aren't producing like they should.

It is so weird that he's not relapsing but we are having this problem.

Last edited by shadowii : Thu Sep 26, 2019 at 07:51 PM.
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