gvhd and feeling like a test bunny.

[lisa3112]

Hi, just seeing if anyone has experienced gvhd of the scalp? I'm currently weaning off cyclosporin... I'm only on 25mg daily. With weaning I experienced an itchy rash on both my legs and arms. Along with dandruff and an extremely itchy scalp. I seriously thought I had scabies or fleas! I'm day 130ish post transplant.

Another question is my doctor is doing research on a new bone marrow testing machine. He said this test revealed I had 2/200,000 cells had mutation runx1. He therefore wants to do a biopsy (nearly up to double digits). He said if this test didnt exist he'd be completely happy and say I was in remission. I feel like a bit of a guinea pig and unhappy about having another biopsy. He himself said they don't really know what this means as its all new. What would you do?

Thanks, Lisa.

[bailie]

Lisa, I have had itching of the face and scalp. It was strange that it felt under the skin rather than topical. Also, it seemed to move to different locations. I didn't have any itching except on my head. It seemed periodic and would come and go every couple of months.

The more I have been exposed to this disease, the more I realize that the doctors are just as frustrated as we are for answers. Everyone is looking for patterns and often there aren't any.

[Hopeful]

Another question is my doctor is doing research on a new bone marrow testing machine. He said this test revealed I had 2/200,000 cells had mutation runx1. He therefore wants to do a biopsy (nearly up to double digits). He said if this test didnt exist he'd be completely happy and say I was in remission. I feel like a bit of a guinea pig and unhappy about having another biopsy. He himself said they don't really know what this means as its all new. What would you do?

Thanks, Lisa.


Hi Lisa,

I would do the BMB...but maybe a little closer to when you would normally get one.

It does seem like the purpose would be to contribute to research, but if you are understandably tired of being poked and drilled right now, I would delay the biopsy 6 months (or whatever your BMB frequency is). The machine will still be there :)

[lisa3112]

Thanks for replying hopeful and ballie. I actually had a phone call today from drs... they organised a dermatology appointment tomorrow. Yay, might get some miracle concoction to stop the itching.
Hopeful I noticed you had trisomy 6 also.. its so rare!! Thankfully no trisomy post transplant.