NLPHL

[evie93]

Hi I only joined NHL because I have NLPHLand it is rare and not many pople have heard of it. Is there any one out there with NLPHL who suffer from long term neurology from the chemo drugs Vinblastine or Vinchristine and are duroloxine for this?

[BerkshireBear]

I had a long history of neuropathy before my diagnosis with NHL. My oncologist was about to start the standard cocktail of drugs but chose to omit Vinchristine because of its known causative effects on neuropathy.

[evie93]

Hi BerkshireBear

I have had NLPHL for 42 years now. It is one of those disease that is indolent and incurable.I have had both Vinchristine and Vinblastine. With Vinchristine the neuropathy went after I finished the course of treatment. The vinblastine the pain and simptoms where far more aggressive to the extent that it was suspended the vinblastine after only four cycles. I thought that the neuropathy would get better but after 5 years it is still the same. I was precribed Duroloxine by my neurologist but the side effect are bad. I spoke to my doctor today and they are going to change the tablets. Not sure to what.

I have two problems. Do I take the tablets for the neuropathy or just put up with the pain? The second problem is my oncologist is engaged in watch and wait. I have a number of enlarged nodes that are small and in inacessable places for a biopsy. I see the oncologist next week and I think I am to have another PET scan. If the news is the worst I don't know what to do. This latest scare has been going on for over a year. We(oncologist and I) were talking about drug regimes and it was thought that this time I would be given vinchristine again. I am not sure about this.Although itaffected me more favourably I was much younger. I really don't know what to do.

What do you do for your neuropathy?