EATL LYMPHOMA

Bart T

I recently started treatment for EATL lymphoma which as I understand it mainly affects people with Celiac disease (which I have). It is in the T-cell lymphoma family. Do any members have this variety of cancer? I would like to hear from people going through treatment, especially survivors. All comments are welcomed. Thanks.

po18guy

Very sorry to hear this. All T-Cell Lymphomas are rare and EATL is essentially extremely rare. For this reason, it is imperative that you seek the advice and/or treatment under a dedicated T-Cell specialist. Are you in the states?

I have had PTCL-NOS and AITL, diagnosed in 2008.

Bart T

https://csn.cancer.org/discussion/comment/1709738#Comment_1709738

Yes, I am in the States and currently being treated at Sloan Kettering. I have confidence in the doctors who are specialists in lymphoma and they speak optimistically, but I remain skeptical.

po18guy

Probably the best facility in the US. Their staff includes Dr. Steven Horwitz who is known globally as one of the best of the best in combating T-Cell Lymphomas. Now, as to your current situation, cancer patients experience a type of grief. Among the types of grief, there is what I term "diagnosis grief", and virtually all of us experience some level of it. Yet, life remains worth living and this is one situation where we are well advised to maintain the long view toward fighting it into remission. If you have a belief system, now is the time to dive in as both body and spirit are in need of support.

Almost all T-Cell varieties must be treated aggressively and EATL is no exception. I have been out of the lymphoma game for about 8 years, and so am out of date as to treatment options, but MSKCC will have the latest research data as to the most effective treatment. I would imagine that the pan is to get you into remission and prepare you for a stem cell transplant. First remission is the best window of opportunity for transplant, as that offers the best hope of a durable or even permanent remission.

To offer you hope, a personal anecdote. At diagnosis, I was stage IV with 50+ tumors and lymphoma in my marrow. After receiving eight drugs over four months, my Peripheral T-Cell Lymphoma immediately relapsed, and we could never achieve a remission long enough to transplant. The last "official" prognosis was "extremely poor" and that was before two additional cancers arrived. Eventually, no prognosis was possible, as I was a patient group of one. The PTCL eventually relapsed twice and several years later, one or more of the existing tumor cells mutated into Angioimmunoblastic T-Cell Lymphoma, a "cousin" of the existing variety. And that second variety relapsed as well, per the pathologists. After seven years of treatment, my marrow was so damaged that I developed MDS, a cancer related to Leukemia. In 2015, I had all three cancers simultaneously. About 100 tumors between both types and lymphoma in my marrow, as well as my spleen and small intestine.

At that point, we had literally run out of lymphoma drugs and had used some other cancer drugs "off-label" in the fight. Transplant was the only option aside from palliative care. A carefully calculated three-drug regimen placed both lymphomas back into remission and I underwent a stem cell transplant using my son as donor. At that point, the MDS was still present in my marrow, but reduced by about 90%. However, I have remained in remission from both lymphomas, and after two years, the MDS was also in remission. Cancer free now for 6 years out of a 15 year stretch.

This all sounds impossible, but taken one day at a time, it is clearly possible. And that remains the best way of looking at this battle. Since 2008, incredible strides have been made against T-Cell Lymphomas. So, there is always hope - particularly when you are being treated at one of the world's premier facilities.

Bart T

https://csn.cancer.org/discussion/comment/1709798#Comment_1709798

Thanks. Your post is very encouraging. The plan is chemo to get to remission and then a stem cell transplant, but as I understand it it will be my own stem cells. I'm in fight mode and again thank you for your insights and kind words.

po18guy

It is good that you are up to the fight. that is the usual plan: autologous transplant in first remission. That is your best chance for a durable remission. Rest assured that you are in excellent hands at one of the nations - even the world's - premier facilities.