Peripheral T Cell - NOS - pctl

Sorry to hear this. I would have replied earlier, but an issue locked me out. I hope that you have consulted with a T-Cell Lymphoma specialist at an NCI designated facility if you are in the US. It can make all the difference in outcome. These are the rarest and least understood of all lymphomas. Since the initial prognosis is poor, it points out the absolute value of seeking the best and brightest hematologists.

Have a look at the T Cell Leukemia Lymphoma Foundation, as that was developed specifically for T-Cell patients.

Also, if you are in the US and not at an NCI facility, you may find the nearest center here:

I have survived two different T-Cell Lymphomas, one of them three times. Plus a myeloid cancer in my marrow. I can add much more, but this is a start.

Good! Ask if they have a T-Cell specialist, as that is crucial. If not, I would not hesitate to travel to Moffitt in Tampa - they have an absolutely brilliant staff there.

For the record, I have survived PTCL-NOS three times, Angioimmunoblastic T-Cell Lymphoma once and 20 Q del Myelodysplastic Syndrome once. All three simultaneously in 2015.

Yes. A haploidentical (related donor - son) transplant in 2015. There are now more treatment options than ever. Even then, it is good to remember that research is producing new treatment options on a regular basis. During the seven years of my primary treatment, several new drugs became available, and I received all but one of them.

Sounds like Adcetris/SGN-35, a unique drug-antibody conjugate that has shown remarkable results inCD30+ T-Cell Lymphomas. It is the fisrt non-CHOP drug to be approved as first line therapy (in certain cases) since the CHOP regimen was formualted for B-Cell Lymphomas decades ago. There are also other combinations and new single-agent drugs that have used to good effect.

But first, remission and transplant. It is not easy, but then again life is not easy. Fighting and suffering for that life is absolutely worth the effort.

Several years back, I had the good fortune of a brief conversation with the CEO of SeaGen (formerly Seattle Genetics) and I was somewhat embarrassed to admit that his product was the one that I didn't try. :-0

What to read is the 2018 report of the T Cell Consortium and anything newer.

Not entirely upbeat, it does provide a picture of increasing knowledge and better outcomes.

My last double remission (Plan E!) was at age 63 with multi-organ involvement as well as treatment-related co-morbidities, so your case is looking very good indeed. As well, autos in first remission have their best chance. Many worry about relapse post-transplant. Yet, worry never solved anything. Therefore, something to consider: in the back of your mind post-transplant, you might just store up the many future options you have. Not out of a sense of pessimism, but rather to build confidence.

The wide variation in T-Cell patients is always surprising. To some degree all cancers (being DNA-based), but T-Cell malignancies in particular are very individual. No two journeys the same. With only a customary rather than a defined treatment, there is much uncertainty. As the T-Cell Consortium noted, there is considerable hope.

Hope builds in our world. I had no significant expression of CD30, so that was the one drug I did not receive.

The Seattle Cancer Care Alliance (Fred Hutchinson). Ironically, the brilliant research hematologist whose intellect and ability I credit with saving my life three times is now the chief medical officer of SeaGen, who makes Adcetris. He began also treating children with T-Cell Lymphomas, but the loss of so many was both wearying as well as motivating. Being clinician, professor of hematology and researcher, he could not devote the research time needed to make substantive advances in medicine. So, he resigned his clinical practice and moved into full-time research.