Hello everyone..hope you all are doing good. Here I need some help!

[Shikha tomar]

My mothers mds relapsed and as dr. Suggested she had alloHsct 6/6 Match..on aug-2015
after transplant she recovered platelet but her hb was always around 6-7,,,now she has irritation in her eyes and sore throat + Thrombocytopenia (platelet count=29,000)
her biopsy report shows insufficient stem cells...shes on cyclosporin and many more drugs.
dr.'s have no idea whats the reason behind it but as i was going through so many articles i found one which says irritation in eyes is related to cgvhd and that thrombocytopenia thing is may be because of secondary failure of platelet recovery.
please anyone here who had similar problem
what kind of treatments are available for such problem. I want to know more about this SFPR thing.,
please somebody help!


Biopsy shows insufficient cells
Chimerism 100% donor


----------------------------
MDS relapse allohsct performed on 18-aug-2015, 18% Blasts Had mild gvhd ,
+317day , low platelet count 29,000
lowTLC..irritation in eyes and sore throat! ( Mild cgvhd)
prescription
Acivir
Cyclosporin
Pentids
Bactrim
and now Revolade because of low platelet counts

[DanL]

Shikha,

I thought that I had responded to this post, but am sorry that I don't see it here. I am sorry to hear of your mother's troubles thus far, but believe that you can still hold hope.

Low blood counts after transplant can be attributed to several factors including relapse and a graft that doesn't take (worst case scenarios) or issues with too much immune suppression or underlying illness, like CMV or some other illness that brings down platelets and RBC.

Looking at your mother's drug list - there are sometimes reports of lower blood counts from taking bactrim and pentids. I happened to respond this way to bactrim, so my doctor had me do pentamidine treatments to try and stave off pneumonia. For the pentids, I don't know what would be used to replace it, but would ask if it is absolutely necessary as a prophylactic against bacterial infections. There are several other antibiotics that may be less harmful to blood production for your mother.

The other drug that might be causing lower blood counts is cyclosporine. It is a common immune suppressive drug to use after transplant, but each patient responds differently. A couple of possible replacements include tacrolimus and sirolimus, or MMF, or any number of other drugs. In many cases, reducing immune suppression or changing the drug used to suppress the immune system may help the graft become stronger and help blood production.

In my case, I was almost 2 years post transplant before my blood counts looked normal. I was still a little low, but not so low that I needed treatment or transfusions, so it may just be a matter of time.

Ask the doctors lots of questions and ask about alternatives.

I wish you and your mother best of luck in her recovery.

Dan

[PaulS]

Hi - aside from the numbers, how's your mother feeling?

In addition to the medications DanL mentions, i was also told that GVHD can also consume platelets - and that platelets often take a while to recover in any event. Mine hovered around 20 for nearly six months and did not start to go up until after I was given Rituxin to combat GVHD - they are still only around 100 nine+ months out. It also took me longer generally for counts to recover due in part to the number of stem cells I received in the transplant and because I had mylofibrosis that made it harder for the stem cells to "find a home."

If she is disease free and 100 percent donor as it sounds like - then maybe time and tweaking medication will do the trick.

best wishes,
paul

[Shikha tomar]

I don't know what's going on with her actually but her all counts are dropping platelets are at 22,000 TLC at 2000
Hgb 7.3..
Dr.'s are saying it is graft failure..
And suggesting second hsct using another donor
Is there any treatment instead of second transplant
?

[medicalenigma]

Hello there, i came across this information but do not know if it is helpful.

http://www.bbmt.org/article/S1083-87...375-4/abstract

Also I am taking Promacta for my platelets. It is keeping me alive. My platelets were 6000 before it and now 50-100K.