Peripheral T Cell - NOS - pctl

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briankut
briankut Member Posts: 23 Member

I am 49, was diagnosed pctl nos in sept 2021. I have completed 6 chemo sessions (was clear of cancer after 2 rounds - i think thats a positive) - i am so worried about the future - i have autologous stem cell transplant in 1-2 mos and i just always read how bleak the prognosis is for pctl nos. I have a 13 year old boy with autism / epilepsy and a 16 year old girl and a wife i love so much. I need encouragement and am just so worried

-Brian

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  • po18guy
    po18guy Member Posts: 1,487 Member
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    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.

  • briankut
    briankut Member Posts: 23 Member
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    Thank You ! I am in Birmingham , AL and yes , we have an NCI cancer center - thank goodness

    Thanks for the tcell link !

    -Brian

  • po18guy
    po18guy Member Posts: 1,487 Member
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    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.

  • briankut
    briankut Member Posts: 23 Member
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    Thats amazing ! Are you currently in remission ? Did you have a stem cell transplant ?

    -Brian

  • po18guy
    po18guy Member Posts: 1,487 Member
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    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.

  • briankut
    briankut Member Posts: 23 Member
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    Glad to hear that - I have autologous stem cell transplant coming up soon. My doctor is already working on plan B and had me sign consent form for my original biopsy to be tested against a newer drug (I am CD30+) - thats been a good thing , I was allowed targeted BV treatment in my chemo regimen

  • po18guy
    po18guy Member Posts: 1,487 Member
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    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.

  • briankut
    briankut Member Posts: 23 Member
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    Yes i had adcertis with my chemo - new agent they are testing my cells against just in case - totally forgot the name

  • po18guy
    po18guy Member Posts: 1,487 Member
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    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

  • briankut
    briankut Member Posts: 23 Member
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    Yea - ha tbats funny - the data for adcertis is really not so strong for pctl nos, but anything that helps, helps ! It was just approved in 2019. My oncologist told me - DO NOT read a bunch about pctl nos - many of the studies are 30 years old and paint a grim picture. My IPI is a 0…and the chemo put me into complete remission before this transplant…i have a lot of things going for me.

  • po18guy
    po18guy Member Posts: 1,487 Member
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    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.

  • briankut
    briankut Member Posts: 23 Member
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    It is getting better (survival), and I am in CR1 - have low LDH, no bone marrow or organ involvement , age <60, high performance status - and have autologous coming up so thats the best i can ask for.

    -Brian

  • po18guy
    po18guy Member Posts: 1,487 Member
    edited January 2022 #14
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    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.

  • briankut
    briankut Member Posts: 23 Member
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    I agree 100%…I can’t live in fear and just have go forge ahead !

    thanks so much you have helped !

    i am also talking to a woman who is now 42 , who went thru exact same experience at age 36 ! She hit her 5 year mark a few months ago !

    -Brian

  • po18guy
    po18guy Member Posts: 1,487 Member
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    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.

  • briankut
    briankut Member Posts: 23 Member
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    Adcertis - i am feeling better and better that i received it (had 58% CD30+ in my pctl nos). The research is small but its amazing when added in with stem cell

    https://ash.confex.com/ash/2021/webprogram/Paper151105.html

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Hope builds in our world. I had no significant expression of CD30, so that was the one drug I did not receive.

  • briankut
    briankut Member Posts: 23 Member
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    You made it just the same and i am glad you did ..what center did your treatment ?

  • po18guy
    po18guy Member Posts: 1,487 Member
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    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.

  • briankut
    briankut Member Posts: 23 Member
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    That is so awesome ! Wow