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Cancer Combatant on Enbrel Waiting List
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.
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 naïve 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
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!