Non Hodgkin's Lymphoma- Watch & Wait Approach

Im in the middle of RCHOP for transformed follicular lymphoma and agree with the proactive approach of diet and exercise. You’ve got this! Looking for a tribe too.

I had chemo and the drugs for just over 9 months then had chemo one day a month for the next year and a half. Labs of course. Had the bone marrow test and confirmed that it had entered the bones but look at me now. Prayer and positive belief that all is well and I am doing great. I had both knees replaced this year as had bone on bone and knees were really bad. I wore them out over the years and here I am doing fine and happy I had it done as can walk so much better. I was limping and used a cane at times and now all is well. I just turned 81 this month and feel Blessed. I pray all is well with you. Keep the faith.

My oncologist and I discussed medical options if needed. He also told me when I was first diagnosed in 2021 that the marginal zone is considered chronic and would have considered watch & wait if I hadn't had DLBLC in my stomach lining (diffused large b cell lymphoma).

I'm in excellent health and am almost at the point where I've healed from the effects of chemo—backache, hair loss, and minor numbness of the fingertips. I prefer to reduce medical intervention as much as possible and focus on diet, exercise, and mental wellness.

So, I'm seeking my tribe of folks with similar experiences who take a proactive approach.

Hi @emmiet. I’m sure you’re a little anxious about finding even a minor recurrence of your MZL on scans. We all hope for a permanent remission after going through chemo. Fortunately marginal zone lymphoma tends to be a slowly developing type of cancer in the lymph nodes. So jumping right back into treatment isn’t always warranted. Did your doctor discuss a potential for another round of chemo or immuno therapy?

@loribmt Somehow, I missed this message. Yes. I have been diagnosed with marginal zone lymphoma and am currently in a watch-and-wait protocol. I was diagnosed in 2021 and did six rounds of immuno/chemotherapy that ended in March of 2022.

My April and July 2024 scans showed minor recurrence in four lymph nodes. Therefore, I'm in watch and wait.

I've been on Watch and Wait since July 2024. I'm having difficulty finding folks with a similar diagnosis. My oncologist is great but isn't offering me much guidance on what to do while on W&W.

If You Are Doing Watch & Wait:
What's your diet and exercise like? Are any of you vegans? Do you work out? I have been looking for a support group but can't find one with folks on watch and wait, regardless of rogue cell type.

My Back Story
I was diagnosed in 2021 with stage 4 marginal and DBLC. I went through 6 rounds of chemo that ended in March 2022. All scans were clear after the 3rd round of chemo. I looked forward to fewer scans and oncology visits before my April 2024 scan. But, my April PET scan showed some minor recurrence of the marginal zone--4 spots.:-( Minimal tumor growth was found on my July 2024 scan compared to April's. I have no symptoms, am very physically active, and learned to ride a bike on August 24, 2024.:-) I am seeking community.

I had my bone marrow biopsy in 2021. It hurt a little but helped find out what is going on with me. If your doctor thinks you need to have one then do not worry too much about it. I thought it would be much worse than it was. My labs have remained stable until recently as my Neutrophil Absolute suddenly dropped into the low range. I go to see my oncologist October 1 and she told me the drop is not worrisome but I cannot help but worry a little.
I do alternative IV therapy - Ozone and Vitamin C. Not sure if it is making a difference but I know it is not doing me any harm.
I am regarded as stage 4 but still on Watch and Wait.
Good luck with everything and keep in touch.

Hi Kathy, Our home is in pan handle and we generally leave in late October. Voting by absentee ballot this year so we can still head out before November! The weather is perfect Oct/Nov with hardly anyone there! So we hate to miss the solitude before the rest of the snowbirds fly south for the winter. 😅 Bummer, you’re quite a ways further south than we are. Too bad. It would have been fun to grab dinner/drinks and have a chat.

@elainejarrett. Hello Elaine.. Even though your post I am responding to was Mar/2023, I was wondering if I could ask you details about your bone marrow biopsy… So being diagnosed that you have lymphoma in your bones, you were put on the “Watch & Wait” protocol ?? I was diagnosed with Follicular this last May/2024 (very new to this)… I’m low grade 1-2, but Stage 3, with numerous affected nodes throughout my body. My bloodwork just recently came back with some low counts. I will be retested in October, and if still low, my doctor said he will want a bone biopsy.. So, I guess I’m wondering about that, thinking that would be more serious, or not ?? How are you doing now? With it being over a year ago since this post of yours, are you still on “Watch & Wait”…. Hope you see this and will respond to me. Thank you, take care….
Kathy

@loribmt Hey Lori… We will be leaving shortly after the election.. God willing ☺️ Where is your home in Florida? We live in North Port, half way between Ft. Myers and Tampa! It would be fun to meet up if we live anywhere near each other. Have a good week… I’ll keep you posted on next steps with my bloodwork. Thanks for the chat ❤️