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Archive for the 'SPTCL' Category

An End Of the Year Revisit — SPTCL and Misdiagnosis

If you’ve read this blog for awhile, then you know 2008 was the year of SPTCL misdiagnoses.

SPTCL, subcutaneous panniculitis-like T-cell lymphoma, was the rare and deadly lymphoma that kick-started my work as Every Patient’s Advocate.  I was told I had it.  In fact, I was told by two labs and an oncologist that I had it, and had only a few months to live.

But I didn’t.  And I’ve written extensively about the fact that I didn’t have SPTCL and what I did to figure that out.

Earlier this year, in May and then July, I was contacted by two others who were dealing with the same diagnosis of SPTCL.  Heather contacted me, then Daniel’s mother contacted me (Daniel is a teenager).  They had found my work on the web and asked if I could help them get the information they needed.

So I did.  And we learned that both Heather and Daniel had been misdiagnosed, just like I had.

Fast forward to today — the end of the year, and holiday time. I checked in with both Heather and Daniel to make sure they are still doing well.  And yes, they most certainly are!!

I still choke up.  It’s still a bit overwhelming.  That’s three human beings, all of whom shared a misdiagnosis, none of whom underwent chemo, all of whom are healthy today.

Which is precisely why I do this work.

Here’s to even more great discoveries and saved lives in 2009.

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Two Healthy De-Cancered Patients

De-cancered — a good word, isn’t it?  Look at these two faces — they look quite healthy, don’t you think?

Well — they most certainly are — quite healthy, despite the chemo both faced prior to proving neither one had the cancer she was diagnosed with.

What this photo doesn’t show, is the emotion behind it.  In fact, I have trouble looking at our smiling faces without choking up. That’s Heather on the right — the young woman who contacted me last June to tell me she had been diagnosed with the same rare lymphoma I had been misdiagnosed with.  We proved the professionals were wrong — Heather had no cancer at all.

And that’s me on the left — I was just so happy to meet my very healthy friend Heather and see for myself, in person, that she’s doing so well!

We met for the first time last week in Las Vegas, not far from where Heather lives, and actually quite far from my home in NY.  I was there to attend an About.com conference – but we made time to see each other.  And it was the very best “event” that took place during the entire visit to Nevada.

My hope for you is that you, too, will take the time to learn everything you can about a diagnosis you’ve been handed — it may be correct, or it may not.  I promise you that if either Heather OR I (or Daniel, who was also misdiagnosed this summer) had believed the professionals, despite our intuition and proof to the contrary, we would not have been able to meet each other, we would not be healthy today — and we would not be here trying to inspire you to better and more successful medical outcomes.

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Daniel Was Misdiagnosed with SPTCL, Too

It’s been awhile since I’ve posted.  In that time I’ve been the Gramma-sitter for my two little grandsons while their new baby sister arrived (welcome Kyla Shay!), buried my ex-husband’s cremains (he died last April), spoken to two groups of patients, recorded two radio shows and finished my book proposal.

Enough excuses, you say!

But neither of these efforts, nor the emotions associated, can come close to the roller coaster Daniel’s family has ridden in the past nine months.  Even those emotions pale in comparison to the relief they felt during the past week as they learned that, just like Heather’s story earlier this summer, and my story, too, Daniel doesn’t have SPTCL either.

Learn more about their discovery and the report from the NIH.

So.  A h*ll of a track record in 3-1/2 months, wouldn’t you say?  Three reports of subcutaneous panniculitis like t-cell lymphoma (SPTCL).  Two of them aren’t even cancer.

I wish you could hear the song in my heart, and see my smile and tears of joy!  If not one single other patient ever benefits from my work, then I will always know these two people – Heather, then Daniel — have been spared chemotherapy.

Pressing on. And OH so happy!!

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Daniel’s SPTCL Diagnosis is Suspect, Too

When I was (mis)diagnosed with SPTCL (subcutaneous panniculitis-like T-cell lyphoma) in 2004, I was handed a book, published in July 2004, that stated that “fewer than 100 cases have been reported in the last decade.”

Yeah — really, really rare. Because that’s a book used by oncologists all over the world.

Then, from Fall 2004 through May 2008, I heard from only two other people dealing with SPTCL diagnoses. One was a husband of a woman diagnosed. One was the friend of a person diagnosed. I never heard back from either one, so I don’t know their outcomes.

You can imagine then, however AMAZED I am, that I have now heard from three people diagnosed with SPTCL in the past four months!

Heather — we worked together and proved she had been misdiagnosed, too. You can read her story on my SPTCL page.

Cynthia — who has struggled and been treated for her SPTCL for two years or so.  Here’s her story in her own words.

And now Daniel — a 15-year-old boy whose mother, Sonia, contacted me. Daniel’s diagnosis is HIGHLY suspect, like Heather’s and mine. She’s still in the process of chasing down more details.  You can read the latest on Daniel here.

The point?  We are developing a community of people who can offer information — and hope — to others who have just received a devastating diagnosis, and are reaching out to others.

You can do the same!  No matter what your diagnosis, you can look for other blogs that address it, or set one up yourself.  Share information,  Vent.  Ramble.  Get angry.  Help someone else — the most important part.  We’re all in this healthcare thing together, you know.

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Heather, SPTCL, the Next Chapter – Hang on to Your Hat!

[To catch up on previous chapters of Heather's story, link here (post #1) and here (post#2.)]

Heather had her first oncology appointment today.  She was lucky to get in so quickly after her primary care physician ditched her (that still makes me shudder) and she was prepared.  Last week, after my post about her diagnosis of CGD-TCL, cutaneous gamma-delta t-cell lymphoma, she had been contacted by Judy Jones at the Cutaneous Lymphoma Foundation, and she was feeling as prepared as she could.

What she was NOT prepared for was what happened!

Her oncologist was happy to tell her that the results of her clonality test had come in and it turns out that no, she does not have cancer.  No treatment needed.  They will continue to follow her for awhile, but don’t expect the diagnosis will change.

WHAT??

If you’ve read my story of SPTCL, then you know the clonality test was pivotal in my story, too.  In fact, my entire diagnosis was predicated on this clonality test, and like Heather’s — the clonality test proved I did not have cancer.

While Heather was there, the oncologist got back in touch with the lab in California that reviewed the clonality of her lymphatic cells.  They reviewed the slides, reviewed the findings, reviewed studies and all agreed that no — Heather has no cancer.  She does have some problem some lymphatic cells, but she will not be treated.  Instead, she is working on diet and nutrition.  She’ll be checked again in four months.

To say Heather and her family — and her co-diagnosed friend Trisha — are euphoric, doesn’t begin to touch it.  We’ve not even met in person, but Heather and I will share a bond forever.  She lives in Nevada, and I’m supposed to be out that way in October — so we hope to meet.

Mostly I’m thrilled, just thrilled that the system worked the way it should.  Heather’s friend Leslie found me and my experience, Heather and I consulted, and two patients worked together to arrive at the right answers for this young mom who only deserves the best.

Now read what Heather has to say about it all — and post a cheer or two to her blog.  Woo HOO!

(And Heather — thanks so much for your kind words. I still choke up everytime I think about what we accomplished. We made quite a team, didn’t we?)

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