Mother just diagnosed with follicular lymphoma.

Posted by lmatherton13 @lmatherton13, Jul 1 1:41am

Hello, my mother was diagnosed with follicular lymphoma in June 2025. We were advised that it is a slow-growing, low grade lymphoma. As my mom is asymptomatic at this time, the doctor informed us that treatment would be held for now. He said they only treat when symptoms occur. He told us about the symptoms to watch for in the future.

What bothered me about it was he stated that the treatment seems to be chemotherapy that is toxic and it can give her leukemia. He did not give us medication names yet. Also stated that radiation is an option, but listed off all of these horrible side effects.

One of my reasons for posting is to gain some insight on this disease and the treatment. options. I’ve searched a lot so far, but I haven’t looked into how the different medications for treatment or types of treatment may be beneficial or for her diagnosis. I just was t sure if someone could provide some insight on 1. The types of chemotherapy medication treatments out there for this condition by experience and/or 2. Alternative treatments, such as immunotherapy.

Thank you for your help on this matter and for reading.

- Lisa

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edl75 | @edl75 | Jul 2 11:21am

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

lmatherton13 | @lmatherton13 | Jul 2 3:01pm

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.

kit491903 | @kit491903 | Jul 3 7:11am

In reply to @lmatherton13 "Thank you for the reply. I am glad to hear that you are doing well right..." + (show)

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.

If you want, I can help you find a top lymphoma specialist near you or explore current clinical trials tailored to indolent lymphoma.

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