Active Surveillance vs. Treatment for NHL & Mass Against Kidneys

Hello @stonyah and welcome to Mayo Connect. I can understand your fear of beginning treatment. Getting a third opinion at the University of Michigan is a good idea. I live in SE Michigan and I am also seen at U of M for a different type of cancer.

I would encourage you to post on Connect's Kidney Cancer support group. In this group, you can share these experiences with others who can then share their experiences with you.
Here is a link to one of those discussions,
--Wanting to Connect with Kidney Cancer Patients
https://connect.mayoclinic.org/discussion/wanting-to-connect-with-kidney-cancer-patients/
How are you feeling, @stonyah? Are you fatigued or do you have other symptoms?

I must congratulate you for being assertive about your care - and following up on your suspicions about what the causes may be. It sounds as if you may have had very suboptimal care to-date - starting with the person that did the dermal fillers and then tried to remove the filler. Wow! How absolutely awful!

I received a diagnosis of stage 4 low-grade NHL in October 2024. Watch and wait was recommended. That lasted for 3 months when, during a follow-up scan, it was determined that one of my enlarged lymph nodes was putting pressure on a bile duct near my liver. A week later, I started immunotherapy without chemo (Rituximab). I will have weekly infusions for 4 weeks and then every 8 weeks. The first infusion was a bit difficult, but the second went smoothly. Since the low-grade is generally not curable, the goal is to keep it under control. Chemo is often used in conjunction with the Rituximab, but it was discovered that I have a somewhat rare mutated gene that makes me not a good candidate for chemo. Apparently, the low-grade can transform to fast-growing, which is curable -- but not always cured. I have a complete blood panel prior to each infusion and will have scans every 3 months for at least some time. I am at an excellent medical facility but it did take some time to get a diagnosis with various scans, blood work, biopsies, and bone marrow biopsy. My main symptom prior to diagnosis was an enlarged spleen. Watch and wait seems a bit counter-intuitive; however, if the cancer isn't curable, it seems logical to hold off negative side effects for as long as possible. Staying strong and healthy is a priority so that I can withstand whatever treatment options might give the best outcome down the road. In addition to praying, that is about all I can do for myself. I reviewed my list of vitamins with my medical team to ensure I'm not doing anything counter-productive.

@stonyah, has it been determined in the mass on or pushing against the kidney is cancerous or not? Lymphoma that has spread to your kidneys might be referred to as kidney lymphoma. Do you know if it is metastatic NHL or a possible new primary?

I was pn watch and wait for 3 months after diagnosis. When the scan was repeated, it was determined that one of the enlarged lymph nodes was putting pressure on my liver potentially impacting bile function. I immediately started rituxan infusions weekly for 4 weeks. After completion, I'll have the infusions every 8 weeks and scans every 3 months.

No, I am not experiencing any other symptoms.

Yes, it is cancerous. It is pushing against the kidney. Unfortunately, I have lost the kidney due to the tumor.

Hi @stonyah
I have been diagnosed with Stage IV CD10-/CD5- low grade B cell lymphoma, morphologically most consistent with nodal marginal zone lymphoma and we're doing 3-monthly labs to decide if/when to start treatment. I'm not crazy about Rituxan from what I read about it and started reading on this board to find possible alternatives. After reading your post I am wondering what the outcome was at the Michigan cancer center. I hope you're doing well!

Hi @schimmi It’s always a little scary starting a new treatment and I know you’re not crazy about having the Rituxan infusions for your B-cell lymphoma. But this drug has a proven track record for treating B-cell related issues.

I also had to receive rituximab (Rituxan) infusions weekly for a month to treat B-cell related inflammation on my spinal cord. It’s a strong anti-inflammatory drug. I had lost feeling from my waist to my toes and after receiving high doses (1000 ml) daily of IV steroids to reverse the damage, the Rituximab infusions prevented the inflammation from returning. It has worked beautifully.

My doctor explained that most patients have some reaction to the first infusion. But that the infusion specialists would be right there with me, ready to handle any side effect should it arise. I did have a reaction which came on subtly at first while I was reading a book. My throat had an odd feeling so I told the nurse. She immediatly gave me an injection (in my IV tube) of a steroid and Benadryl. Then slowed the drip rate. That was it. Crises averted and the subsequent infusions after that were uneventful. Which is typical for most people. I didn’t have any notable side effects except that my spinal cord healed and my ability to feel my legs, walking and balance all returned. For me Rituxan was a miracle drug. And I think you’ll find for many B-cell lymphoma patients this has been a beneficial treatment

There are a number of conversations in the forum with B-cell lymphoma patients. Here is a link to the search results: https://connect.mayoclinic.org/search/

Looking at your bio page I see that you’ve been a member since 2023, but this is your first time posting. So, belated Welcome to you! What brought you to Connect back then?

Thank you so much for this detailed response; that really helps.
I was diagnosed in Feb 2019 with HER2+ breast cancer, thyroid cancer, NHL, and a groundglass on my lung. It was quite overwhelming and totally out of the blue because I've always led a healthy lifestyle, integrating all kinds of "anti cancer" foods and supplements in my diet. But being hit by an SUV (as a pedestrian) in 2012 really threw my system out of whack; I'm always wondering if that could have 'helped' to bring on the cancer.
I had chemo, then lumpectomy and radiation, and more 'chemo light'. I have chosen to watch the thyroid cancer (confirmed with a needle biopsy) and in the last PET it isn't even mentioned anymore: hurray! We are also watching the lung groundglass which has stayed stable. And I have 3-month labs and 6-month visits with my oncologist to follow the NHL. Since my neutrophils were 0.3 in Jan and I've been dealing with an infection of a lachrymal duct and I've been feeling very worn out, my oncologist put me on LevoFLOXacin for a week (not crazy about taking antibiotics, either): last pill today and a video visit with my oncologist. She also started talking about treatment with Retuxin and I came back here to find out more about it.
I had joined this board in 2023 for some research on aromatase inhibitors vs tamoxifen; I had first chosen Tamoxifen because of osteoporosis and high cholesterol, but after developing a blood clot we switched to AI. I tried all three, with problems sleeping and other side effects, and finally got off it last year - after doing a BCI test about which I learned here: thank you!!