Subject: The Lowdown on Cladribine

From: [email-masked] (Richard Long)
Date: Tue, 07 Jan 1997 07:03:36 GMT

(forwarded from Jackie Ferguson)

 My MS was progressing in a "lurch" when I heard about cladribine.
The  more I read, the more enthusiastic I became.  Plus, I talked with
a  young lady who had taken clad., and encouraged me to take it
because I  WAS progressing! 

 I took the clad. from Aug. '95 to Feb '96.  It was
 given intravenously (about l hour) in my doctors office (my doc's
 subspecialty is oncology) ... and they almost always administer the
 drug, because it is FDA approved for hairy cell leukemia, etc.---
NOT FDA APPROVED FOR MS --- oncologists have the most experience with
it.  

I took it Mon through Fri, one week/mo for 6 months.  For a total of
30  doses.
 
 Side effects? There were no obnoxious ones that I could discern ...
no loss of hair, no nausea, vomiting or diarrhea or headaches.  I felt
fine throughout.
 
Make no mistake:  It is a high powered drug ... and potentially could
immunosuppress you so completely that it could be fatal.  That's why 
the oncologist monitors your blood very carefully ... in my case, he
delayed  treatment on a few occasions ... even so, I developed
"profound  neutropenia" (neutrophils -- type of disease fighting white
blood cell --  fell <500.  So I stayed at home ... avoided company,
and followed other instructions of my doctor (was even put on an
antibiotic  prophyllactically).  But nothing bad happened (that's why
I can tell  you about it!).
 
 I noticed my MS started to stabilize after 2-3 months.  I then began
a  course of intensive physical therapy ... was taught how to walk
again --- imagine!!!
 
 I continue exercising daily.  Try to do 1 hour at least.
 Most recently I have been working on Tai Chi for my non-existent
balance (what's that?).  I reserve judgement on Tai Chi ... I still
need bilateral support for balance.  At least it's been ages since I
fell.
 
My quality of life?  I'm driving my car again ... short distances to
my hairdressers, Dr's. offices and now, department stores! (Thanks for
hand  controls, Amigo's & Lifts, and a very supportive husband!
I walk around the house either "solo", using a cane or a 4 wheeled
walker.  I walk outside for short distances ,,, walking a block is
even "pushing" it.
 
Clad is expensive @$500.00/dose and most insurers won't pay for it.
Multicenter trials should be ending soon.  I really think the results
will be good and FDA approval should follow.
 
Just wanted to say it like it is.  Having MS is no fairy tale, and the
treatments can have nightmarish consequences.
 
I am happy that I took the clad... but each of you who is considering
it, has to really think about it.  Risk versus benefit.  Something
really good could happen, and something very very also.
 
I'd love to hear from each of you what you decide?  I don't get to the
MS group as often as I'd like.  I do check my email almost daily
(below).

I posted this group in particular because you expressed an interest in
clad.

Jackie Ferguson. RN, MS2
[email-masked]
 
     ---------------------------------------------------------------
 REPOST -- due to FAQ
 Subject: Re: Cladribine
 Date: Fri, 22 Nov 96 17:45:06 +0000
 From: Jackie Ferguson <[email-masked]>

 RE: Getting Information on Cladribine:-
 
 1,  Contact your local chapter and the NMSS, ask for the Information
 Resource Center.  The number of National is:1-800-fightms.  They can
 also give you the phone number of your local chapter.
 
 2.  Go to the source!  Cladribine (AKA as Leustatin and 2CdA
 [2-chloro-deoxyadenosine]), is manufactured by Ortho Bio Tech, Inc.,
 pharmaceuticals.  They will provide a wealth of information.  I 
recently called and received a packet of info on clad., including a
summary of studies 1&2, a copy of the Lancet artical "Cladribine in
the Treatment of CPMS", July 2, 1994, package insert of the drug
itself, and a voluminous number of articals in a large envelope,
"information yourequested" ... includes press releases from the NMSS,
several scientific and Medical Professional articals (because I
requested it). If weight is a measure of the quantity of info. sent,
first class postage was $3.00.

Can assure you the information was top quality and specific to my
questions.
 
I spoke to Katherine Hsu, R.Ph., "Drug Information Specialist,
Clinical Affairs".  She called back promptly, when I left a message in
her mail box.
 
Write or call to: Ortho Bio Tech., 700 U.S. Highway 202, PO Box 670,
Raritan, NJ 08869-0670 or call 800-325-7504 or 908-704-5311.
 
All the best to my MS compatriots.
 
 Jackie Ferguson, RN, MS2
[email-masked]

PS I'd love to hear from each and every one of you ... this is a
tough,hard decision ... do what's best for *you* ("To thine own self
be true"

Regards,

Richard Long

Burnaby, B.C.
Canada

Where it's probably raining.It usually is.