DLBCL in cecum/ throat

ADKGirl
ADKGirl Member Posts: 2 Member
edited March 2022 in Lymphoma (Hodgkin and Non-Hodgkin) #1

My brother was diagnosed with DLBCL in his throat area and started RCHOP therapy. after his 3rd treatment, it was discovered he had lymphoma in his cecum as well. We've asked about surgery to remove his cecum, but no one seems to think it a good idea. Meanwhile, my brother is in a lot of pain in his right appendix area and suffers nausea often. He finished the RCHOP therapy but still shows some lymphoma in both areas. We were referred to a Dr in Rochester, NY to discuss CAR-T Cell therapy, but it is not FDA approved for patients who have only undergone one form of treatment.

Is there anyone out there who has dealt with these issues and could share your journey?

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2

    Surgery is rarely avised in cases of lymphoma, as it is a "liquid" cancer and the tumors melt away once the proper therapy hits them - but what is the proper therapy? One formerly experimental regimen that "could" be considered is called TREC (Bendamustine, Rituxan, Etoposide, Carboplatin). It was developed to be a less toxic alternative to the common salvage regimen of ICE. I would hope that his pathology is nailed down, as lymphomas can be diabolically hard to diagnose. If so, then it is a matter of finding which regimen his lymphoma hates.

    I had a vastly different scenario, involving two T-Cell Lymphomas and a marrow cancer called MDS. "In my case" three of the four drugs in TREC (Treanda/Bendamustine, Etoposide, Carboplatin, or "TEC") took me from stage IV, two dozen tumors and lymphoma in my spleen and ileum, to no evidence of lymphoma in just two infusions - but there is no medical explanation known for the good response I had.

    You might have a look at the information provided by the Leukemia and Lymphoma Society on DLBCL and treatmeent:

    https://www.lls.org/sites/default/files/file_assets/PS58_NHL_Booklet_2020FINAL_rev.pdf

    https://www.lls.org/lymphoma/non-hodgkin-lymphoma/nhl-subtypes/treatment-aggressive-nhl-subtypes#Diffuse%20Large%20B-Cell%20Lymphoma

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #3

    My opinion - and I am not a doctor - is that lymphoma in an extra nodal location like the cecum could possibly benefit from surgery. Blood cancer can occur anywhere there is blood. It is not limited to lymph nodes. That I am certain of because my cancer was both nodal and extra nodal (but not removed by surgery). But the best answer is to locate doctors whom you trust and let them decide.Cancer treatment should not be decided upon by amateur guess work. Good luck.

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