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Just diagnosed with Mantle Cell Lymphoma 23+ and looking for input

Posted by nhlbob @nhlbob, May 2, 2022

Hi, I was just diagnosed with Mantle Cell Lymphoma two weeks ago. The doctor ordered an inguinal lymph node dissection on a 1.3cm swollen node (been the same size since 2018 when I first noticed it) seeking to rule out Sarcoidosis but the biopsy revealed MCL 23+. The report idicated that 23+ appeared to have a better prognosis than 23- (I'm unclear what that translates to). Waiting for PET and bone marrow biopsy results. The oncologist where I'm being seen overseas at the moment indicated that because my lymphoma is considered aggressive that there is a better chance at acheiving complete remission with 8 courses of Immunotherapy and Chemo. But when I spoke to a Lymphoma Oncologist at MD Anderson, he said this disease is incurable and that Anderson no longer even uses chemo to treat this. I'm so confused, bewildered and terrified at the moment, and would appreciate any first-hand knowledge and input that anyone might have.

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Mentor
Lori, Volunteer Mentor | @loribmt | May 4, 2022
In reply to @nhlbob "My wife, sister and father also concur with your thoughts that it should be taken care..." + (show)
@nhlbob

My wife, sister and father also concur with your thoughts that it should be taken care of now. They keep repeating "catch early, treat early."

The PET scan showed many right side groin lymph nodes that are affected or highlighted on the scan. A surgeon removed the largest one (1.3cm) for biopsy and it was matted to the one next to it which was much smaller so two were actually removed. I asked the oncologist about removing all of the right side ones but he said that wasn't the way to treat Lymphoma even though it was localized. I even inquired about radiation but he did not think it was a viable solution. Yet when I spoke to the oncologist at Northwester, he mentioned radiation, but couldn't say anything definitive without seeing all my testing results.

Lori, may I ask if you sought a second or third opinion after you were diagnosed and deciding what to do? And thank you so so much for your replies!!

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Really, any of the options for treating cancer are never on our list of top 10 things to do. Treating a lymphatic cancer systemically with chemo or locally with radiation will have an impact. There are some larger facilities which have the capability of proton beam radiation treatments. The advantage being more precise with a reduction in long and short term side effects.

If you want a second opinion it sounds as though you have time with the cancer being stable. I can feel you’re just not sure with how to proceed so maybe it would ease your mind visiting Mayo or Northwestern for a consult.
Here’s that link for Mayo again. http://mayocl.in/1mtmR63

As for a second opinion for my trip through cancer land, I didn’t have an option with my AML treatment. It was hospitalization within an hour of diagnosis. I’m so fortunate with my cancer team at home as they’re the clinic I would have chosen anyway, so that was a relief.
Transplant phase, I had a choice of 4 clinics within ‘reach’, being Chicago, Minneapolis, Milwaukee and Mayo.-Rochester. It was a no-brainer as far as my husband and I were concerned. Even though it was further away, Mayo was our first choice. After meeting with my assigned doctor in the BMT transplant department in Rochester, we both knew this was the doctor and team who would give me a second chance at life. We never looked back. Best decision we ever made. The compassion and quality of care, the braintrust of the staff, and the sense of hope at Mayo, made it an easy decision. Yes, I’m biased. ☺️

You have a great support team with your wife, sister and dad. This is a big decision so I’m glad you’re not going through this alone.

If you go ahead with your treatments in Thailand, is this through an infusion center as an outpatient or will you be admitted to the hospital?

REPLY
1 reply
nhlbob | @nhlbob | May 4, 2022
In reply to @loribmt "Really, any of the options for treating cancer are never on our list of top 10..." + (show)
@loribmt

Really, any of the options for treating cancer are never on our list of top 10 things to do. Treating a lymphatic cancer systemically with chemo or locally with radiation will have an impact. There are some larger facilities which have the capability of proton beam radiation treatments. The advantage being more precise with a reduction in long and short term side effects.

If you want a second opinion it sounds as though you have time with the cancer being stable. I can feel you’re just not sure with how to proceed so maybe it would ease your mind visiting Mayo or Northwestern for a consult.
Here’s that link for Mayo again. http://mayocl.in/1mtmR63

As for a second opinion for my trip through cancer land, I didn’t have an option with my AML treatment. It was hospitalization within an hour of diagnosis. I’m so fortunate with my cancer team at home as they’re the clinic I would have chosen anyway, so that was a relief.
Transplant phase, I had a choice of 4 clinics within ‘reach’, being Chicago, Minneapolis, Milwaukee and Mayo.-Rochester. It was a no-brainer as far as my husband and I were concerned. Even though it was further away, Mayo was our first choice. After meeting with my assigned doctor in the BMT transplant department in Rochester, we both knew this was the doctor and team who would give me a second chance at life. We never looked back. Best decision we ever made. The compassion and quality of care, the braintrust of the staff, and the sense of hope at Mayo, made it an easy decision. Yes, I’m biased. ☺️

You have a great support team with your wife, sister and dad. This is a big decision so I’m glad you’re not going through this alone.

If you go ahead with your treatments in Thailand, is this through an infusion center as an outpatient or will you be admitted to the hospital?

Jump to this post

Your experience at Mayo sounded really great! "The compassion and quality of care, the braintrust of the staff, and the sense of hope" is what I am in need of right now!!

If I stay and get treated in Thailand, it is through Bumrungrad International Hospital, and I would be admitted for 2 days during each treatment, and if feeling okay, then allowed to return home until the next treatment 4 weeks later.

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