Diagnosed with fNHL

jennoverst

Good morning, my 78 year old mother was just diagnosed with Follicular Non-Hodgkins Lymphoma, and she is going to be starting chemo soon. This whole experience has been such a roller coaster for our family. She didn't know she was sick until Labor Day weekend, and after the weekend, I ended up taking her to the Hospital. They found a large 5" Mass in her abdominal area that was pushing up against the Kidney (causing it to fail), it's pressing up against her spine, and it's beginning to encase one of the valves to her aorta. They drained the fluid built up in one of her lungs and abdominal area, and inserted a nephrostomy tube to allow the kidney to drain as it should. With all the testing that she has gone through, and surgical biopsy on two nodes in her neck, they believe the mass is due to the Follicular Lymphoma. The doctor seems pretty confident that doing some chemo will shrink the tumor to a very minimal size, and the other issues that it's causing will go away. She was diagnosed with Stage 3, possibly 4 (wouldn't know if it was 4 unless they did a bone marrow biopsy), Grade 1-2 Follicular Lymphoma. He wants her to do Bendamustine and Rituxan.

As I said before, it's been a roller coaster, and SO much has happened in the last 6 weeks, it's been absolutely overwhelming. I would love to hear from others who have been through this first hand, or with your family member, and if you have had positive results.

I do worry about her as she does have autoimmune issues, she is only about 5'1 and 135lbs, and she's 78.

ShadyGuy

My lay advice - I am not a doctor. You may want to ask about trying Rituxan monotherapy first due to her age. It is generally not a harsh therapy. You can always add Bendamustine to the mix at any point if the R is not effective. There is no recognized cure for FNHL so in my case I seek to avoid the harshest therapies and try to manage the disease. That said, bendamustine is one of the less harsh therapies when compared to some others like CHOP. If you trust the doctors talk to them and follow his/her advice. Good luck.

newoldguy

I am a 74-year-old male and went through six months of B/R last year for Stage 3, 3a NHFL. PET scans showed complete molecular remission after third treatment. Now almost finished with the first year of R maintenance. CT scan about 3 months ago was clear. Will continue maintenance for another year. B is quite tolerable, I had some AFIB, watch the caffeine. R is well tolerated. They pretreat with steroid, Benadryl, anti-nausea med. etc. I was never ill and never had nausea. The anticipation of chemo was much worse than the actual protocol.

Best of luck.

jennoverst

https://csn.cancer.org/discussion/comment/1701033#Comment_1701033

Thank you SO much for your response! Mom starts her Chemo a week from tomorrow, and hearing your response really made her feel a lot better!

newoldguy

Further to this, Bendamustine may cause some gastrointestinal upset initially, but this can be handled with over-the-counter meds and is temporary. Fatigue is often an issue and getting out and walking several times a day if possible is highly recommended. These meds both cause immune suppression. With covid, flu, RSV, etc. we avoid crowds, sick children, and eating in restaurants but do feel fairly comfortable with outside activities. This all should be addressed by your oncologist.