April-May '02 | briefing | mail | don't say this | flakers' jargon | flaker creativity | articles | other places | archives | send mail | ed dewke | legal stuff | order | search | 2001 Ed Dewke

Skin Cancer Combatant on Enbrel Waiting List
from Michelle M.

Backstory:  Flaker on Cyclo Now Diagnosed with Skin Cancer

Hey there Dewkster!  The last time I wrote I had just been taken off of cyclosporine and was going through treatment for squamous cell carcinoma ("SCC").  I am still fighting that battle and see the surgeon every couple of months and get two or three of those nasty buggers taken off.  The SCC is still confined to my lower legs, so I'm thankful it hasn't spread to the rest of my skin (yet).

I am writing today because, like you, I am on the waiting list for Enbrel.  I noticed you mentioned you were hoping to get Enbrel sometime in the year 2002.  I registered in February of this year, and according to the manufacturers of Enbrel, may actually start using the drug sometime mid-summer.  

My PA isn't as severe as my skin P, so you can imagine how anxious I am to see how it affects my skin as well as my joint pain.  According to the articles I've read, the skin P seems to be clearing up quite nicely in patients on Enbrel for PA.  Although I feel that it's too late for my skin to ever look "normal," since I have a lot of UVB and PUVA damage (freckling and lack of elasticity), as well as a lot of scarring from the biopsy sites and skin surgery sites, just the thought of not itching or having the soreness and flakiness (is that a word?) makes me almost giggle inside.  To have the fresh air hit my arms and legs, or the wind blow through my hair without being embarrassed that someone will see my scalp is a very comforting thought (am I being naive?). 

I would have to say that my scalp P is what bothers me the most.  It's been over 20 years since I've pulled my hair off my face, or gone without bangs.  If there is ever a miracle treatment or cure found, the scalp relief would be my absolute favorite part of it all.

I am anxious to hear about your trial with Enbrel once you get started.  I will keep in touch to let you know how it works for me.  Take care! -Michelle M.

*****

Ed’s Response:  Great to hear from you, Michelle.  Glad to hear you are fighting the good fight re: SCC — your spirit shines through your words with reassuring strength.  First to your parenthetical questions:  Is “flakiness” a word?  Sure is here! ... Are you being nave to find comfort in dreaming about life flake-free?  If you are, we all are, so sit down and stay awhile.  We can call it a happening.  (Remember those?)

I’ve received two letters from Wyeth/Immunex regarding my enrollment application for Enbrel.  The first, dated March 27th, just said “as soon as product becomes available we will notify your physician....”  The second, dated April 5, said they expect to be able to “activate new patients this summer” — which could mean any time up to Labor Day (September 2), I suppose.  

However, I’ve begun to have second thoughts. 

There’s been some news lately about Enbrel maybe increasing risk of infection and contributing to the development of lupus (see Injuryboard.com).  After almost 3 years on methotrexate and cyclosporine — two drugs that diminish the immune system’s responsiveness in some way — I’m not sure increasing my risk of infection is a good idea.  (I’m further at risk because of my diabetes.)  I intend to have another conversation or two with my derm before I start taking Enbrel. 

But I can certainly sympathize with your lust for a return to flake-free living, Michelle.  Let’s call it a race and see which one of us gets there first!  -Ed

This Month's Mail | Archives

www.flakehq.com