Non Hodgkin's Lymphoma- Watch & Wait Approach

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 ❤️

Hi Sally, I also have SMZL diagnosed in May. Just hoping to connect with others to share info and support. Am currently watch & wait although my immunoglobulins getting lower. How have you been doing? Feel free to AMA, have done a ton of research and had 3 opinions at this point! Thank you, Lila

Hi Kathy! Thank you for the positive update! It’s always a relief when those scans are ‘unremarkable’ isn’t it? Been there myself many a time! ☺️

Finger’s crossed your bloodwork bounces back to normal range too! Just in time to head for Florida. I noticed in your bio you split your time between Wisconsin and Florida. We do too. With the cold weather today and the fireplace on, my mind started to wander to the Gulf. 😅. When do you leave?

@loribmt Hi there… was just looking through some notes and saw you asked me to let you know how my September
3 mo. scans went. Everything appears stable, no significant growth at this time. We would have been comfortable waiting 6 mos for my next scan, but some of my bloodwork came back low. My WBC was low, also my monocyte and lymphocyte numbers were low. So he’s having me come back in a month to re-check those numbers. Hopefully they go back up. I’m feeling good other than I have discomfort quite often in my neck when those affected nodes get really swollen. (They go up and down as most know!) Anyway, getting more use to this being my journey and learning as I go! One step at a time! Take care… catch you down the road!
Kathy

@quimbie Thank you so much for your reply. It is so helpful hearing of other’s experiences. When you say you had chemo for over 2 years, do you mean you were treated a number of times? I am so glad for you that you have had been in remission for a number of good years!! My biggest fear (when I allow myself to think about it) is that it may transform into LBCL while I am in the “Watch & Wait”. By the time it shows with symptoms or bloodwork changes it will have already transformed, which is more serious and a much harsher treatment needed. I’m doing my best to rest in peace with it and learn to live with it…. Most of the time I do very well in not letting it consume me. Thanks again.

I had to wait 6 years before I received treatment. Had chemo for over 2 years and then cat scans until this year but get blood work every 6 months when see the Dr. Diagnosed in 2005.