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

Hi @nhlbob “I'm so confused, bewildered and terrified at the moment…” Well of course you, are after getting diagnosed with a blood cancer and having differing opinions for treatment. It pulls the rug right out from under you! I’ve been there so I can truly appreciate what you’re going through.

From what I’m been reading about your disease, immunotherapy, in a combination with chemo, seems to be the predominant treatment along with a Stem Cell Transplant and in some cases, Cart T therapy.
Searching further I did find information that validates what you were told by the MD Anderson doctor regarding Chemo for Mantel Cell Lymphoma. It’s not used as a solo treatment anymore but generally in conjunction with an immunosuppressant targeted to the suppression of B-cells. Which, your cancer is recognized as a subtype of B-cell non-Hodgkin’s Lymphoma. So you’ll most likely be given a drug called Rituximab or Rituxin along with some forms of chemo drugs.

The Lymphoma organization website gives a good overview of lymphoma and treatments. Make sure you look at the menu on the right side of their site as it gives options for areas of interest.
https://lymphoma.org/aboutlymphoma/nhl/mcl/
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I found a little more reading for you in case you’re interested. We have a number of discussions, some older but still germane, regarding mantle cell lymphoma. The last site is a blogpost from Dr Grzegorz Nowakowski, a hematologist at Mayo Clinic.

https://connect.mayoclinic.org/discussion/mantle-cell-lymphoma/
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https://connect.mayoclinic.org/blog/hematology/newsfeed-post/putting-the-precision-in-precision-medicine-care-for-non-hodgkins-lymphoma-1/

You mentioned being not being in the US. Will you staying for treatment where you’re currently living?

Hi Lori - thank you so much for the reply and links. I just received the PET and bone marrow biopsy results today. The PET showed the lymphoma has not spread to any other part of my body, and the bone marrow biopsy showed it has not spread to the bone marrow. The oncologist said the lymphoma was isolated to the right inguinal lymph nodes only and that they did not appear active (I wasn't clear what that meant other than I took it as a positive for the moment). He classified my mantle cell lymphoma at Stage 2.

He recommended a treatment plan of Rituximab and Bendamustine for 6 courses. He did not think it was a good idea to watch and wait. I will also be consulting with Mayo Clinic. I live part of the year overseas and the rest of the time is spent in the US. I really want to get as much clarity, confidence, and certainty as possible surrounding a treatment plan. Once that is achieved, I can make my decision whether to remain overseas and see if Mayo can work with the oncologist here regarding the treatment plan, or come back and travel to Mayo to be treated. I wonder if the treatment plan by Mayo and the oncologist where I am at overseas is reconcilable, whether there is much difference where I receive the exact same medication. Any thoughts?

Hi! That was definitely great news that the cancer hasn’t spread. 😊
I’m on the road today with limited internet access. So for now I’ll give you the link to appointment requests at Mayo. This link will take you to the main page where you can select which campus is convenient for you. http://mayocl.in/1mtmR63

My Mayo team works closely with my oncology team back home, if that gives you some peace of mind. I have more information and will reply later when I’m back online. 😊
Are you confident with your current team?

Thank you for the link. Yes, I would truly appreciate to know more how your Mayo team works closely with your oncology team back home. I look forward to your reply later when you're back online.

Regarding your question about being confident in my team, my wife and I are in Thailand and being treated at a renowned hospital in the region which also happens to be listed as one of the top 150 hospitals in the world by Newsweek. To be honest, I feel my oncologist is very knowledgable in blood cancers and oncology in general, he's also a professor at the top medical school here, and he did an anatomic / clinical pathology fellowship at Mayo twenty-five years ago. And perhaps it's a cultural thing, but I feel he doesn't particularly appreciate it when I ask a ton of questions that I've researched online or a web site about my disease and treatments etc, and prefers I put 100% trust in his experience and treatment recommendations.

From my experience, the collaboration between my local clinic and my Mayo transplant team has been flawless. I was undergoing the final phases of chemotherapy for my AML back home and knew a bone marrow transplant was required. My local hematologist/oncologist worked with Mayo-Rochester to make necessary arrangements for the transplant. At that point my local doctor graciously pointed out that “From now on, your doctor at Mayo will be calling the shots. I’ve gotten you as far as I can take you in treatment but I will continue to work with your transplant team on this end for as long as you need me.”
Well, that continues to this day, 3 years later. I have labs done locally, and any medications or infusions orders from Mayo can be administered at my local infusion lab. I had a couple of instances occurring during my transplant recovery which required prompt treatment by my local doctor, who then called my transplant doctor for direction. There’s no chest thumping or any feelings of intruding on each other’s territory. It’s a flawless collaboration. Obviously I can’t answer from the perspective of you team in Thailand but Mayo Clinic makes every effort to work with local providers for the benefit of the patient.

Though I have to say, it’s not that easy with every doctor. My new primary care provider sees things differently! He doesn’t appreciate being second in command. Fortunately my Mayo and my oncologist are usually all I need. 😅

It does sound as though your doctor is very knowledgeable and esteemed in his profession. And being in one of the top medical schools/hospital in the world is very impressive.
I’m not sure if it’s a foreign cultural thing, as you mentioned, or if it’s the age and revered position of your current doctor that has him less appreciative of fielding questions. I admit I’m spoiled because it’s not a situation I have with my team. They encourage questions and are forthcoming with information. But again, it’s part of the Mayo culture to be open.

You asked about continuity of medications between Thailand and the US or vice versa. I don’t have experience with that first hand. But I have mentored a young woman who lives in India with a parallel cancer/transplant journey. She’s shared her medication list with me and they are mostly all the same. She had rituximab and that was the same as mine. So I think that would be something to discuss with your doctors wherever they are.

How soon does your doctor want to begin treatment?

Thank you so much for your generous insight. He wants to start treatment right away. I called an hemo-oncologist from Northwestern Memorial in Chicago and he suggested due to the early stage and being localized in only one side of the groin that "watch and wait" might be something he'd recommend, but couldn't make a definitve recommendation without seeing all my medical records. But "watch and wait" seems pretty scary too, just waiting for the eventual hammer to drop. And because MCL is considered an aggressive form, I fear waiting would eventually cause it to spread further and make treatment more difficult.

Prayers For Clarification & Peace….After my diagnosis of amyloidosis & talking with my local doctors & kidney specialist I prayed for answers & found peace…. I ended up at Mayo Clinic in Rochester, Mn. God gave me peace during my Prayer Time. We lived in Michigan at the time and after asking God about my situation the “Sun” came shining through the clouds & shown on me. An experience I’ll never forget. Sun during the winter in Michigan is limited…..
This is my Prayers For You…..🙏❤️

Thank you @peggyjean. I appreciate your prayers. I have so much anxiety surrounding my newly diagnosed disease and what treatment plan, if any, can truly help me. I'm finding it a bit difficult to function at the moment.

I can sure appreciated the position you’re in and wrestling to come up with a decision. You’ve gotten the really encouraging news that the cancer is localized and hasn’t spread anywhere.
But since it’s a cancer with the potential to spread, it seems to me, having this taken care of now, when it’s small and contained would be prudent choice.
I know little about this particular cancer, but since it’s localized to one lymph node could this possibly be surgically removed?

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!!