I have put a link in my “Resources” tab from Don’s Myeloma Hope Blog regarding this. I found I was always hunting for it to pass along to someone who was trying to deal with this common side-effect from chemotherapy treatments.
I like this link so much, because he includes many different regimens that are being suggested, prescribed or used by facilities, doctors, and patients. Its a great place for you to start in your PN management journey.
A vitamin B deficiency in an otherwise healthy person, can cause PN, which is why you will see Vit B’s in the solution. Dave and I found also, Alpha Lipoic Acid has been very helpful. While it doesn’t work for everyone, it has worked wonders for Dave. He takes 600mg 2x daily, up to 2400 mg/day, as needed (abstaining on Velcade infusion days).
There is also a vitamin available we were recently prescribed by Little Rock called Metnx. Although I don’t know that Dave is taking it at the moment, so I can’t really comment much more on it.
This is by far the most universally common side effect I hear about in cancer patients and particularly MM patients. It can be debilitating and it can create permanent nerve damage issues, so aggressive efforts on your part to keep it down to a dull roar or controlled is a worthwhile effort. I’ve observed some doctors will be somewhat uninterested in how much its impacting you, but give you options to try. I think they feel that they are trying to save your life and this is just one of the down sides to that. I’ve noticed other doctors will stop giving you a life saving drug regimen because of the PN symptoms. One doctor we talked to said he no longer prescribes Thalidomide for instance, to any of his patients, because of the PN. I personally found this a bit shocking, I mean Thalidomide for many is indeed a lifeline.
I can’t advise you on what to do or tell you how serious your PN is or isn’t, but I thought I would put up some resources for you in your search as a newly diagnosed patient, struggling with this new thing in the course of your treatment.
Thank you to Don at Myeloma Hope for putting up the regimens from so many who have gone before us.
