Thoughts on neuropathy?

As you know in the UK our treatments are free so it no skin off a consultants nose ad to what is given or not…… but I always think that if you are proscribed antibiotics you take them all - you dint stop halfway through.

For me 6 treatments (R-EPOCH) were the required level of treatment to do the job and get me in a position for going into Stem Cell Transplant (SCT) so even at the end of cycle 5 things looked ok but there was still ‘a chance’ of significant activity that could sink our plan. I was told that I would never be 100% cancer clear following my treatment but the hope was SCT would complete the job……. Well that was not the case after my first SCT and I relapsed within 6 months so we threw the chemo kitchen sink at me 10 months later and had my second SCT……. that was 6 years 8 months ago and I am still in remission but the resulting neuropathy was crazy and put me in a wheelchair for months but it all cleared after about 2 years.

It is all about the greater good in this so it is totally a personal decision.

I would guess they tried 5 or even more that 6 when they were doing trials and found 6 was best.

I did R-Benda too with 6 planned but cut the 6th one to ritux with half the benda dose as I had had good response so far and some of my blood levels were starting to dip. What you're having with pain doesn't sound like typical neuropathy which tends to be numbing and/or pain in feet and fingers. I've got numbness in my feet from my first chemo (RCHOP) but haven't found that the R-B added to it. Have you been offered physio? That might help.

Wow! That’s a long haul of recovery from your neuropathy! And to have been wheelchair-bound…just Wow. And so traumatic that you still countdown the years and months. I’m so glad you’re on the right side of it!

I’m getting your gentle message to tough it out for the greater good in the long run. Every fiber of my being wants to stop this right now. But I do understand that finishing might just make the difference between ‘almost’ dissolving the bone lesions versus completely dissolving the lesions.

UPDATE: On Sunday, I somehow stumbled into a nest of chiggers while weeding the flower garden. I am covered head to toe in chigger bites. Hundreds. Which means hundreds of openings for possible bacteria. I look like I have the measles. And the itching… it’s just off-the-charts awful. On Tues, I developed a severe allergic reaction. My doctor put me on doxycycline and actually suggested I don’t do the Benda next week, but he does still want me to do the immunotherapy - Rituximab. Getting that news made my day, my week, my month!!

The reason I hesitate to trust the magic number 6 is that my doctor waffled a bit right in front of me. He pondered whether to do 4, 6, or 8 treatments and said, “Let’s try six and see how that goes.” So if 4 had possibly been on the table originally, and I’ve had 5…well, it was worth a question to him, at least.

My blood numbers look impossibly low to me. But until my Dr says they're too low to continue, I suppose I have to trust the process. It does concern me that Covid is firing up again and my white cells are almost non-existent. I know six people right now that have it. I had Covid in Dec 2020 and tested positive for covid antibodies last Fall. But, is an antibody a white cell? Have all of my covid antibodies been destroyed? I’m being very careful about who I come into contact with.

No one can give me a good explanation about my bone lesions. What they are. How chemo and/or the immunotherapy can ‘dissolve’ them. I still feel so uneducated, aside from consulting Dr Google. That’s how I found this forum many months ago. I was researching Lymphoma and bone lesions. Lucky break for me to have found all of you!

Physio is not recommended because my nerve pain is so unpredictable. One day, hip. The next day, knee. The next day, groin. Some days, all locations. A very rare day, no pain. My doctor doesn’t think I’m ready to stress the damaged/healing/chemo-irritated nerves just yet. And when they are hurting and I stress them (and when I say ‘stress’, it’s simple things like steps, walking, getting in the car), it can take up to a week to recover.

That is so helpful to hear. I'm 9 months post treatment and have milder neuropathy than you. No one has talked about possible trajectories so hearing your experience is really reassuring. Good luck!