May-June 2003 Briefing

February and March, 2003, were interesting months for me.  I was half gelded and then radiated for 20 days when it was determined the organ they’d removed was cancerous. 

All this came about 23 days after I started Enbrel therapy — a therapy that is, maybe, associated with increased risk of cancer. 

I kept a diary across 91 days of this experience and have now posted it here: Me, My Enbrel, My Cancer:  91 days of coincidence.

At this time, by all accounts, my cancer has been totally “removed” through surgery or killed off by the radiation.  However, some of the docs say they won’t use the word “cure” for at least three years.  For those 36 months the word they’ll use is “remission” — assuming that word stays applicable.

None of the doctors involved will suggest an association between my use of Enbrel and the testicular cancer.

I’ve decided to think like the doctors and believe my cancer was not associated with my Enbrel therapy.  In fact, I’ve gone so far as to resume Enbrel at twice the initial dosage.  If I get more cancer I’m going to feel stupid and angry.

New NPF Booklet on Biologics

The National Psoriasis Foundation has released an excellent new booklet (16 pages, 4-5/8”x10.5”) about the current and upcoming biologic drugs for treating P and P-arthritis.  The drugs described are Amevive, Enbrel, Raptiva and Remicade. 

If you are a member of NPF, you can download this booklet from the Foundation’s web site, http://www.psoriasis.org.  Look under “Resources” then “Publications” then “Booklets” — it’s at the top of the list.

If you are not yet a member of NPF, you can join with a donation of any amount.  You can join on-line or call 800-723-9166.  When you call you can request this booklet and the Foundation will mail you a printed copy.

FYI — While you’re on-line looking for the new booklet on biologics, scan the entire list of NPF Booklets.  Do you have them all?  Believe me, they constitute an invaluable mini-library of everything you will need to know to become an informed flaker.  You cannot expect your doctors to provide all the information you need to be proactive about your P.  These booklets are the foundation of your knowledge.  The Foundation’s periodical, Psoriasis Advance, as well as their email newsletter and web site round out the knowledge base.  It still amazes me:  to get all this for “a donation of any amount” is much more than a mere bargain.

Cost of Amevive

In the March-April update of FlakeHQ I asked for anybody who had knowledge of the cost of being treated with the new biologic, Amevive, to drop me a line.

My thanks to Shelly Smith for doing just that.  A “course” of Amevive is 12 weekly intramuscular or intravenous injections of the drug administered in a doctor’s office.  This 12 week course can be done up to twice a year if necessary.  The expectation is that one course will provide clearance for several months.

Shelly’s doctor told her a single course would cost “around $10,000.”  As a doctor’s visit is required for each of 12 doses received during a course, you can anticipate a significant variance in this price depending upon where you live. 

Problems getting insurance companies to pay for this are anticipated.  Biogen, the maker of Amevive, has a program to help patients work through insurance issues.  Their number is 866-263-8483.  NPF Members should also check-out Will Morton’s article titled “Overcoming insurance coverage challenges for new treatments” in the current issue (Mar/Apr ’03) of Psoriasis Advance (pages 16-17).

I’ve received a few other emails from people whose derms have told them they may need to continue other forms of P treatment while taking Amevive, including continuation of the use of topicals on stubborn lesions.

If you are currently or are planning to use Amevive, please consider posting your experiences here at FlakeHQ.  Everyone is interested in how well this is going to work and what kind of hurdles might need to be overcome.

PASI versus DLQI — Latin for How is Your Psoriasis Today?

These are two different methods of measuring how bad your psoriasis is.  PASI is an acronym for Psoriasis Area and Severity Index.  DLQI is an acronym for Dermatology Life Quality Index. 

PASI is the oldest method of measurement and focuses on clinical attributes such as how big your lesions are, how red they are and whether or not they’re scaling.  You’ve probably heard the rule-of-thumb that the palm of your hand is about 1% of your skin surface area so, if you say you're 30% effected with lesions, presumably it would take the equivalent of 30 hand palms to “cover” the effected area.  (Figuring this out, by the way, can be a romantic encounter, especially if you’ve got lesions where you can’t see them.)

DLQI is relatively new and assesses how you feel, your daily activities, your leisure time, work/school time, relationships and treatment.  A DLQI is obtained by having the patient answer questions about these life areas over their past week.  If this sounds a bit mushier than PASI, it’s got to be, since much of this information is subjective.

You probably won’t hear your derm referring to either your PASI or your DLQI scores.  PASI is mostly used for clinical research and drug trials and some researchers are pushing to have DLQI accepted for these scientific requirements, too.

I think the DLQI is a step in the right direction.  Those of us who actually flake have known forever that the severity and abundance of our lesions is inadequate to explain the disease’s impact on our lives.  A man can be 50% effected in areas that are mostly covered by clothing and have a much easier time of it than a woman who may have very active lesions only on her hands.  Dealing with P when you’re 10 is an entirely different challenge than it is when you’re 18, or 40, or 60. 

So, if by some chance your derm or doctor thrusts a questionnaire at you with about 10 questions on it, probing how “things have been” for you over the past week, you may be getting a DLQI score.  Don’t worry.  It’s not a pass/fail test.  -Ed

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