The Obligatory Hair Loss Post

I have read a dozen or so blogs over the past few months of people with MS that went through HSCT and it seems all of them have included the dreaded “hair loss” section of their blog…  Well, I don’t want to disappoint anyone so here goes. 

From an educational perspective for other MS'ers, hair loss is almost inevitable as a result of the Cyclophosphamide a.k.a. Cytoxan chemotherapy administered at the beginning of the mobilization phase of HSCT.  Cytoxan is used to minimally suppress the immune system to attempt to prevent an MS relapse after the white blood count is augmented through the 6 days of Neupogen injections to harvest the hematopoietic stem cells for the transplant.  Remember, MS is "believed" to be an autoimmune disease which is exacerbated by autoreactive lymphocytes which attack live healthy tissue "myelin" which causes all sorts of shall I say electrical issues...   So the whole process of HSCT is this:  They reduce your immune response capacity with an initial dose of Cytoxan to prevent an exacerbation, then strengthen your immunity with the Neupogen, then ablate it after the harvest with high dose chemotherapy for several days and then build it back up again by reinfusing your harvested stem cells.  These new stem cells will engraft in your bone marrow and grow into new and hopefully not misguided lymphocytes like before.

For those of you that don’t know me personally, for a 42 year old male I have a very full head of hair.  A head of hair so thick it’s usually the subject of many jokes from my friends and family about how I manage so much thick, voluminous, beautiful hair. 

For those of you that do know me personally, please do not tell anyone that doesn’t know me that I actually have been balding for several years and if chemotherapy didn’t force a massive hair design reconstruction I would have been facing a serious comb over situation to rival the one and only Donald Trump!   

Sad but true, I really have been thinning for a while.  Some of us MS'ers blame it on Solumedrol, others blame it on Gilenya, I blame it on my Uncle Mike.  I remember as a small boy seeing my uncle’s shiny bald head and saying, that must be awful to live like that...

I have been creative with my coiffeurs to cover a little here and there and I managed the best I could but in truth it was time to face reality and make an investment in the future, the electric shaver. 

Before treatment began I was sure that at the first sign of hair loss I would run to the barber, lather up the old cue ball and straight razor it all off.  It’s a little harder than I thought.  I find myself looking in the mirror a little longer each day admiring what once was and wondering what will be if and when it comes back.  I have heard too often that it grows back curly after chemo.  Curly!?!?  Curly like I’ll have to buy a hair pick from the 70’s and 80’s???  Or worse, curly like that which grows in the southern hemisphere of one’s body??? 

I’m ignoring it the best I can, maybe it will stop.  Yes the pillow in the past few days wasn’t pretty and the bathroom sink needs a quick rinse.  It reminds me of one Christmas when I was a kid.  We bought a defective Christmas tree and immediately after we finished decorating it the needles started to fall off by the thousands.  We all just sat there listening to the needles hit the floor like a steady rain trying to ignore it.  By the next morning we had a real Charlie Brown Christmas situation on our hands.  We finally had to resort to the 30 year old artificial tree we had in the basement and start from scratch.  I recall it was missing a few “arms” but it did the trick. 

I will try to hold out until Saturday as I have a big meeting in Baltimore on Friday.  Also, I’d rather not go out for lunch from the office and all of a sudden come back a skin head!  Not very Presidential.  I’m carrying a dust buster with me and every hour or so I shut my office door and give a once over of my desk and chair!

So there you have it, my edition of the obligatory “hair loss” section of my blog of this very very weird experience…