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Thread: Hoping for options after relapse of AITL.

  1. #21
    Super Moderator Top User po18guy's Avatar
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    I just completed participation in my 4th clinical trial. Two for lymphoma and two for graft-versus-host-disease. I guess my only question would be, why not a trial of a new drug combo? Most lymphomas respond to drug combinations rather than single agent drugs. Nevertheless, you can save some money and hassle by at least beginning the trial. The sponsoring company will pay for the drug as well as all study-related costs (scans and supplies, etc.) and often will compensate for mileage and lunches. If response is less than expected, then you simply withdraw from the trial and initiate plan B, C or D.

    Which, by the way, are plans that any T-Cell hematologist should have in hand. They need to stay three steps ahead of the lymphoma. There are plenty of drug for relapsed T-Cell Lymphoma. Romidepsin, Pralatrexate, Belinostat, Mogamulizumab, TEC (Bendamustine, Etoposide, Carboplatin) and some others that I am probably forgetting.

  2. #22
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    So far on the trial drug Cerdulatinib for a week and itís very tolerable. Had my one week visit yesterday and bloodwork was all good. Pancreatic enzymes are high which is expected but if no symptoms treatment can continue. Surprisingly the spots on my tailbone are already responding. The color has faded and the lumpy texture has gone away. The one node I can feel in my groin is responding as well. Hoping for continued favorable progress.

  3. #23
    Super Moderator Top User po18guy's Avatar
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    That is great news! Since I have been out of the lymphoma treatment arena for three years, this was a new one to me. After looking it up, I see that its potential is huge and the FDA has already granted orphan drug status to it, opening the door to further research and development. It also seems to show promise against certain autoimmune conditions, which is also very good news. Here is a company press release from this past September:

    https://globenewswire.com/news-relea...-Lymphoma.html

  4. #24
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    Had a PET after eight weeks on the trial drug Cerdulatinib. I had complete response on the nodules that were in my lungs. The skin lesions on my tailbone are improved dramatically. Not totally gone but they are not showing on the PET anymore. The left groin node hasnít changed much. And I have a new node on the right groin. Staying on the drug for now. Hoping for continued response.

  5. #25
    Senior User
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    Thanks for the update. I'm wishing you continued success in this trial - hoping the next PET shows the stubborn areas have improved!

  6. #26
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    Came off the trial on 4/9/19. I had a core needle biopsy on the node that wouldnít go away. Seems there were about 15% B cells in the sample. My blood test for EBV was also positive. I didnít realize how crappy I felt until I came off the drug. I thought my low energy level was weather related. Anyway after coming off drug I crashed for a couple days then started feeling better. After a week the groin nodes shrunk a bit. Skin got worse. PET today will start a new baseline. I have some small nodes now in my neck that I can feel. Doc has mentioned R-GEMOX. Then SCT. Hoping the Rituximab gets the B cells and EBV. My EBV levels a week ago were much improved since April. I still feel good. Not looking forward to a new drug. I am always anxious about side effects. I have tolerated CHOP, Brentuximab and Cerdulatinib very well. I just get nervous. Anybody with experience on R-GEMOX?

 

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