Update October 2013:
It’s been nine years since I was misdiagnosed with SPTCL, and during these years progress has been made in research and treatment of the disease.
I’m so busy helping patients empower themselves in the other aspects of my professional life (see at right) that it’s extremely difficult for me to keep up! So I’ve asked a real hero in this war against SPTCL to stand in to help you if you are newly diagnosed and would like to reach out for some help. The importance of making sure you have the latest, most up-to-date information can’t be stressed enough. And that’s where Jodi comes in.
Meet Jodi Sykes. She knows about SPTCL…She’s a Patient. Survivor. Advocate. To learn more about SPTCL, you can follow her on her journey through her daily blog, http://www.livinglavidalymphoma.com or read her book, Living La Vida (Lymphoma). If you have any questions or need any further information about SPTCL or Lymphoma, feel free to contact her at MyEnlightenedSpirit@gmail.com.
Jodi will make sure you get the information you need.
(see updates: September 2012 below)
Patients and Stories:
People with a Subcutaneous Panniculitis-Like T-Cell Lymphoma (SPTCL) Diagnosis
[Important! Link here for resources discovered since my experience in 2004, some submitted by other patients and advocates.]
Over the years, I have been contacted only a handful of times by others regarding a diagnosis of SPTCL – subcutaneous panniculitis-like T-cell lymphoma. A diagnosis of SPTCL is not like other, more common cancer diagnoses. Psychologically, it is way beyond — because it is so aggressive and rare, and because most of the online literature suggests a death sentence, fast. (Not true any longer! Keep reading…..)
If you have read my story, you know I did not have SPTCL — mine was a misdiagnosis. But I did suffer the entire early experience — from the removal of the lump, to the biopsy results and declaration that I had SPTCL, to the fear and sadness, frustrating doctor appointments — all of it. But, of course, never any treatment. And of course — I’m still here to tell about it.
I set up this page (in 2007 – a long time ago!) in hopes other SPTCL patients will find it — and contact me. I may be able to accumulate resources for them here. I want to help them in any way I can. I usually hear from 1-2 people per year who have been diagnosed. I always write back. Some continue the dialogue and stay in touch. Others never write back again (which is more than a little disconcerting.)
If you or a loved one has been diagnosed with subcutaneous panniculitis-like T-cell lymphoma (SPTCL) — please comment here, or send me an email (see my email address, above, right). We can build a community, and we can share resources. I’m happy to be a focal point. I truly understand your fear and pain.
As I hear from patients, and they give me permission, I will share what I can with you – in hopes their stories will give YOU hope.
See below for stories.
Important! Link here for resources discovered since my experience in 2004, some submitted by other patients and advocates.
I first heard from John in August 2012 when he wrote to me to tell me he had found this information and was recently diagnosed with SPTCL. I will admit that when I read the title of his email, it caused one of my PTSD meltdowns – the first I had experienced in well more than one year.
Like everyone I hear from, John has experienced lumps that were then biopsied. He’s a young man (30s or 40s?) who is in great physical condition (marathoner and triathlete). His SPTCL diagnosis has now been confirmed, but with a few abnormalities (which seems odd, considering that entire diagnosis is abnormal!) Bottom line, he has been advised to watch and wait.
2011: Jodi (first contacted me in January 2011)
The great news about Jodi is that she has already gone against the odds and won. Her treatment has not been chemo or radiation; rather some management steroids and watchful waiting.
She has become quite the activist for patient empowerment – and would like to correspond with others who have been diagnosed with SPTCL.
Update on Daniel (see Daniel’s story below)
(September 2012) Daniel’s mother, Sonia, reports that he’s doing great. He’s in his third year of college now, majoring in physics, and is healthy as can be.
What more can any of us ask for?
June 5, 2008: Heather
Last night I was contacted by Heather, a 34 year old woman who was diagnosed Tuesday with SPTCL. We talked on the phone, and we are both convinced that there is an excellent chance she has also been misdiagnosed. Except that I was 20 years older than Heather when I was diagnosed, our stories are very parallel. And except for a lump, neither of us have/had any other symptoms.
Heather is going to ask her primary care physician to send her biopsy to the NIH (Cancer Center), to Dr. Elaine Jaffe, as I did. I’ll keep you posted.
July 2, 2008: Heather – an Update
Heather heard back from Dr. Jaffe at the NIH yesterday. In fact, her diagnosis is not SPTCL, but she does have a cutaneous lymphoma called cutaneous gamma delta T-cell lymphoma (CGD-TCL or cutaneous ?/? T-cell lymphoma– gotta love those Greek characters.) It’s heart breaking — because other than the lump she had biopsied, like me, she has no other symptoms. Her CT scan is clear, her bloodwork is clear…
CGD-TCL seems to be a variant of SPTCL. It looks like there has been a tightening of the definition of these types of T-cell lymphomas since my misdiagnosis, drawing a line between alpha-beta cells and delta-gamma cells. They all add up to an alphabet of confusion and yes, fear.
Heather is a remarkable young woman, though. She’s tough and determined and will do what she needs to do to fight this CGD-TCL demon. She has begun a blog which you can find here.
Please root for Heather! If you are of a mind to say a prayer, that’s a good idea, too.
I’ll keep you posted.
You can only imagine how surprised I was to hear from a third person (see Heather’s story above, and Cynthia’s story below) who had been diagnosed with SPTCL in the span of only a few months — remarkable! I am told this disease is diagnosed only 100 times in 10 years. In the past four years, since my own diagnosis, I had only heard of two other people who had been diagnosed with SPTCL between Fall 2004 and May 2008. There has never been any follow up, so I don’t know about their outcomes.
So yes, I was very surprised to hear from Daniel’s mother, Sonia — that her son had been diagnosed with SPTCL at a very well-known and respected Children’s Hospital in Pennsylvania. We talked on the phone, and I have to tell you — it seems HIGHLY unusual to me!
Reminding you that I am not a medical professional, I had so many questions for Sonia, and she is following through on getting the answers.
For one thing — Daniel had one lump only, and it was located on his cheek. That raises question #1 — how can lymphoma be located on someone’s cheek? There are no lymph glands in a cheek…. right?
For the next thing — just like with Heather and just like with me — Daniel feels just fine. No other side effects. In fact, over the past several weeks, he has returned to his job and has gained 20 lbs.
I suggested to Sonia she arrange for Daniel’s biopsy to be tested for clonality and the biopsy be sent to Dr. Jaffe (see above in Heather’s references). So far — almost a month later, so far as I know there are no results for either test.
However — and this truly disturbs me — the return visit to the Children’s Hospital yielded two surprising results. First, that the oncologists were set on Daniel spending the next TWO YEARS in chemotherapy. Now — what I don’t understand — why are they so interested in chemo when they don’t even have the clonality test results? (Need I remind you about how oncologists make money?)
And second — when Sonia told them she wanted to wait for the clonality tests, and that an independent oncologist had recommended radiation with with auto-immune suppressants, the Children’s Hospital oncologists told her she would have to go somewhere else to get him treated. If they can’t do it their way, then they won’t take care of him. (Don’t forget, they don’t have all the test results in yet. Things that make us go, hmmm…)
There will be more to report later this week…. stay tuned….
We did it. We proved yet ANOTHER diagnosis of SPTCL was wrong! I heard from Sonia, Daniel’s mom. Here is her report:
Yesterday, we received the pathology report dated August 29, 2008, from National Institute of Health stating ” we agree this a challenging case, but we do not find evidence of a malignant lymphoma in the tissue specimen sent ” to them for evaluation. (Thank God for His healing power on Daniel!) This is totally contrary to what Children’s Hospital’s pathology report said on July 28, 2008, which stated ” the morphological and immunohistochemical features are diagnostic of subcutaneous panniculitis- like T cell lymphoma.” The suggestive treatment of CHOP’s diagnosis was two years of chemotherapy. Two years on top of the nine months of not knowing what we were dealing with.
Woo hoo!! And… no surprise. I still can’t believe they went after a diagnosis of lymphoma from a lump on Daniel’s cheek? Now, I’ll remind you that I’m not a medical professional, and I haven’t studied anatomy. But I just don’t think there is such a thing as a lymph gland in a cheek. So how can there be a lymphoma there?
If someone can correct that belief, then I’d be happy to hear it. I really just don’t know. Just trying to use my common sense.
But mostly I wish you could see the smile on my face and hear the song in my heart. Daniel has been saved from chemotherapy. I could NOT be happier.