Mother just diagnosed with follicular lymphoma.

I was diagnosed with low grade follicular lymphoma 7 yrs ago. Mine was found because I had one inflamed inquinal lymph node which they biopsied. They did a PET scan to determine if the lymphoma was anywhere else in my body. Fortunately it wasn’t so I underwent 13radiation treatments to destroy that node and the cancer cells. 6 mths later they did another PET scan and all was clear. Now my oncologist does blood work every 6 months to look for any concerning trends. There are blood markers that can indicate cancer activity.. This type cancer is not curable and very slow growing but if progresses chemo is the usual treatment. Make sure your mom is being treated/ followed by a good oncologist. Watching and waiting is not uncommon for indolent lymphoma. Anything I can help you with let me know

Thank you for the reply. I am glad to hear that you are doing well right now. I really would like her to see a different oncologist if she develops symptoms. Just to find out if there are different treatment options than what was already shared with us.

Here is information from ChatGPT. Please confirm this with your doctor. The AI answer asks if you need more information and you can continue your questions and save them by signing in to ChatGPT with your registration information. If you are not able to conveniently access any of these treatment centers, ask whomever you contact at the institution if they provide telehealth visits.
Good luck

Where is the best treatment center for asymptomatic indolent lymphoma and when treatment is recommended what is the treatment?
ChatGPT said:

For asymptomatic indolent lymphoma, particularly follicular lymphoma, the treatment approach and best centers depend on your specific diagnosis, disease stage, molecular profile, and overall health.
🌟 Top Centers for Indolent Lymphoma Treatment (U.S. and Global)

These centers are known for their excellence in hematologic malignancies:
United States

MD Anderson Cancer Center – Houston, TX

World leader in lymphoma care and clinical trials.

Memorial Sloan Kettering Cancer Center (MSKCC) – New York, NY

Renowned lymphoma program and access to novel therapies.

Dana-Farber Cancer Institute – Boston, MA

Strong hematologic malignancy division.

Mayo Clinic – Rochester, MN

High-level personalized lymphoma care.

Fred Hutchinson Cancer Center / Seattle Cancer Care Alliance – Seattle, WA

Expertise in lymphoma and stem cell transplant.

Outside the U.S.

Royal Marsden Hospital – London, UK

Leading center in the UK for lymphoma.

University Hospital of Heidelberg – Germany

Top-tier hematology program.

Princess Margaret Cancer Centre – Toronto, Canada

Major lymphoma research hub in Canada.

🕰️ When Is Treatment Recommended for Indolent Lymphoma?

In asymptomatic indolent non-Hodgkin lymphoma (e.g., follicular lymphoma), treatment is often deferred. This approach is known as "watchful waiting" or "active surveillance."
Treatment begins when:

B symptoms appear (fever, night sweats, weight loss).

Rapid disease progression or bulky disease.

Organ function is threatened (e.g., renal compression).

Cytopenias from marrow involvement.

Patient preference after understanding risks.

💊 Treatment Options (Once Indicated)

Once treatment is needed, options include:
1. Chemoimmunotherapy

R-CHOP (Rituximab + Cyclophosphamide, Doxorubicin, Vincristine, Prednisone)

BR (Bendamustine + Rituximab) – Often preferred for less toxicity.

2. Targeted Therapy

Lenalidomide + Rituximab (R^2 regimen)

PI3K inhibitors (copanlisib, duvelisib) – mostly for relapsed/refractory cases.

3. Monoclonal Antibody Alone

Rituximab monotherapy – effective for low-burden disease.

4. Radiotherapy

For localized (stage I/II) disease – curative intent in some cases.

5. CAR T-cell therapy / bispecific antibodies

In relapsed settings or after multiple lines of therapy.

🧬 Personalized Therapy

Genomic profiling (e.g., EZH2 mutations) and biomarkers increasingly guide therapy decisions. Major centers offer trials targeting these molecular features.
Summary

Best care is usually at a NCI-designated cancer center with a dedicated lymphoma team.

Treatment is often deferred until symptoms or complications arise.

When treated, options range from rituximab alone to combination therapies, depending on burden and risk.

I have indolent, t-cell low grade NHL lymphoma. I'd love to hear about some clinical trials for it. Thank you in advance.

Hi @mj50 Welcome to Connect. Reading through your bio, you noted that you are not currently receiving any treatments for your indolent, t-cell, low grade non-Hodgkin’s lymphoma. Which is often the case if the condition appears stable and symptoms aren’t causing issues…so that’s a great position for you.

You’ve mentioned wanting to participate in clinical trials. With a quick scan through clinicaltrials.gov, I didn’t see any open trials at this time. Since there are beneficial treatment options currently available your doctor may suggest you opt for a plan with a proven track record, when it becomes necessary.
If you’re interested in being involved in a clinical trial, often larger teaching/research facilities would be your best bet. Though there is a sharp decrease in funding for programs right now.

Have you talked to your doctor about clinical trials?

@mj50, I'm afraid that the end of @kit491903's post was a cut and paste remnant of the automated ChatGPT response offering to find clinical trials.

To help you find clinical trials for which you are eligible I recommend contacting Mayo Clinic.
Mayo Clinic Clinic Trials https://www.mayo.edu/research/clinical-trials
Cancer-related clinical studies questions
Phone: 855-776-0015 (toll-free)

As @loribmt suggests, it is best to discuss clinical trial options with your oncologist. They will be able to help match you with a clinical trial with your current status.

Are you currently in treatment?

@kit491903, you're so right that one always has to confirm the accuracy of the answers from an AI tool. Generative AI tools can sometimes generate plausible-sounding answers that are wrong.

As more and more people turn to AI tools, we here at Mayo Clinic Connect created a section in the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) as well as this article to help people use AI safely.

- What is Generative AI? What does this mean on Mayo Clinic Connect? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/

Please note that I removed the final sentence of your post where the AI tool offered to help find clinical trials. I didn't want people to think you are a spammer trying to provide a service of clinical trial matching. 🙂

@colleenyoung No, however, my lymphocytes increase gradually every three months so, my oncologist suggested future treatment: Methotrexate (low dose) with Prednisone to kill cells and eliminate symptoms. Didn't tell me when to start. Pehaps he's leaving it up to me when the symptoms become to much. Unfortunately, I also have IBD issues which are mostly under control via a registered dietician, so sometimes it's hard to tell the difference.

I was DX at 34 which was nearly ten year ago. I have stage 4 and I have had 4 relapses, I have done over 60 chemo, immunotherapy infusions over 7 years. I get scanned every 6 months now. I am watching again right now and they didnt think I would make it couple of years. I had two babies at the time of my dx now in high school and middle school. I have a lot of info to share if you or your mom or anyone here needs. I am always happy to share all the things that have helped me. Best of luck to your mother and each of you. JC

@jscavar77 Hi JC, Oh my goodness, you’ve gone through so much over the past 10 years since your diagnosis of follicular lymphoma (FL). I can’t imagine the challenges of 60 rounds of chemo/infusions while raising two babies and trying to keep a household running smoothly. I’m sure this continually weighs heavily on your mind. But you’ve certainly shown your family and medical team that you have an indomitable spirit of endurance! Your resilience and determination is incredibly inspiring.
Thank you for offering to share your experiences to help others along their FL journey. I hope that you’ll be a regular visitor now that you’ve popped into the conversation. We’re a very supportive group of friends. ☺️

What were the immunotherapy infusions you received?