Hi all. I recently had an auto stem cell transplant (January 26th). My in-hospital treatment consisted of 8 sessions of TBI (total body irradiation) and one each of high dose cytoxan and etoposide. I am 7 weeks post-transplant and I still have no hair! when I was doing my pre-transplant treatments, there was a 7 week gap between treatments and I had about 3/4" of regrowth in that time...now, NOTHING! I also am having issues with the skin peeling off of my hands and feet, which is painful, and my fingernails are peeling away. Has anyone had similar experiences post-transplant and am I going to be bald forever???? :o)
Hi Joni, I don't have direct experience with what you are going through, though I am here to help you in any way that I can. Since you had growth before, I am assuming that's a good sign that you will have growth again. Have you asked your doctor or a nurse regarding your hair re-growth, and skin and nails peeling?
Joni-
you're 50 days post? you're still immuno-deficient, even with an auto HSCT, not to the extent of allo transplant patients, but i would think just enough to be causing some of these issues or at least contributing to them.
Oh now wait a minute are you receiving any sort of prophylactic med to prevent infection, like acyclovir or cyclosporine or maybe a corticosteroid?
I was on acyclovir for the first month but I am not taking anything anymore. I was told that with the radiation, it would take longer for my hair to grow back. When I was 17 and had Hodgkin's, I only had chemo and this time I only had chemo up until transplant...so I have not experienced radiation before. They also told me that this is why I am peeling. As of yesterday, I developed peach fuzz on my head and noticed growth on my eyebrows - YAY! My nails are peeling and the bottoms of my feet just finished but are VERY sensitive and I can only wear certain shoes right now. I am extremely positive about everything, but the lack of hair re-growth was making me nervous :o)
It all goes away and the hair comes back my feet were so sore that i went to the ocean and walked across the sand crying my eyes out my husband offered to carry me to the water but i new the sand would help feet to peel faster the next day my feet felt 100% better. My hair grew back curley this time. Iam 16 yrs post transplant and life is fantastic there are alot of HL survivors out there but we all go back to our busy life and put HL in our back of our minds believe me when i see someone fighting for their life i want to go up and put my arms around them and squeeze but most would really freak out so as i pass them by I smile and say silent pray for them..... Stand Strong there is a light at the end of the tunnel.
HL stage 3b
16 yrs remisson.