An Exciting Update on SPTCL

Hmmm…. you’re wondering…. what on earth is SPTCL? 

It’s the cancer that was supposed to kill me.  It stands for Subcutaneous Panniculitis-like T-Cell Lymphoma.  And when I was diagnosed with it in the summer of 2004, everything I read told me it was very rare, highly aggressive, and even with chemo, my life would not last longer than two years.

That was, until I figured out I had been misdiagnosed

I heard yesterday from a gentleman named Andrew who asked about the basis for my information that everyone died so quickly.  He told me he had been doing some research and had found that there were, in fact, a couple different subsets of SPTCL and some were less deadly than others.  He had read my account of the diagnosis and was a little put off (my words, not his) that I claimed everyone would die if that wasn’t necessarily true.  (I can’t say as I blame him.)

I was excited. Could it be true that new discoveries had been made?  From everything I understood, the disease was so rare that little, if any, research was being done on it.  Not enough patients to bother, if you know what I mean.

I wrote back to Andrew and asked him to share his references, and he did right away.  Much of the information, as you can imagine, is incomprehensible to us mere patients, but I did find some that was a bit more patient-friendly which I’ll share with you — if you’re interested.  Here it is.

Bottom line — Andrew was right.  Here we are, three years later, and there is some hope for those diagnosed with SPTCL.  Different versions of the disease are more or less treatable.  At least it seems that way.  It’s all medspeak to me, but I’m thankful there has been progress.  It turned out I didn’t have the disease at all, but believe me, I sure do emphathize with anyone who is diagnosed.  Been there, but didn’t have to do that.

Bless Andrew for keeping me updated.  And bless anyone who gets a scary diagnosis. 

………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate once-a-week or so email tips
Or link here to empower yourself at
EveryPatientsAdvocate.com
………………
Advertisements

. . .This Blog Has Moved!. . .

Where did everything go?

Not far.
We just relocated, that's all.

You can find every post and comment from this blog
-- and plenty more --
at the new location of the
Every Patient's Advocate Blog.

Just click here:

EveryPatientsAdvocate.com/blog

Please don't forget to change your feed, too!