Ron:
My name is brian & I live in Thornton, CO. Last year, I came home from the hospital for a totally unrelated problem, and experienced "severe hematuria" (bleeding while urinating). Whe I finally got hold of my urologist, I was told that I couold be seen in about 6 weeks. My PCP (primary care physician) told me to go right over to his office & insist on being seen. I wasa seen, grudgingly so, and had a scope inserted into my bladder to se what the problem was. There, right in front of me, was a bleeding tumor which I was told needed to come ljut ASAP. I had the scope done on a Tuesday, and the tumor ws removed that Friday. Then I was told that I should have the whole bladder removed. Naturally, I wanted a 2nd opinion, so I went to another uroogist who also was into natural medicines. Once again, I was told that I needed to have my bladder totally removed. I did so, and then had cis-Platin treatment. Afterthe second of 4 treatments, I had to have a transfusion of red blood and white blood cells since my count was very low. This was repeated after the 3rd and after the 4th treatment of cis-Platin.. My neuropathy started up about a month after the last treatment. I asked my cancer doctor about it, ad was told that it should go away after a year. (My wife has had ovarian cancer twice (1995 & 2000) and she still has neuropathy in her hands and feet.) The thing that bother s me about the neuropathy, is that I tend to drop things (e.g. a full cup of coffee) and my balance is poor. I have to be very careful when I walk, especially around ice on the ground.
No-one ever told me that neuropathy would be a side effect of "chemo", and I am very upset about it. I thought that the drug companies HAD to tell you all about all of the side effects. Has anyone out there ever been told about neuropathy BEFORE chemo treatments? Is there anything that can be done to penalize the drug companies for this serious omission of pertinent information? I would be interested in looking into this more if I had some support.
My wife has been on Neurontin for several years, and I have found that taking 2 pills in the AM and 2 at night serves to relieve the numbness fairly well. If it gets too severe, I just increase the dosage a bit. However, since this medicine is known to make you sleepy, I don't up the dosage very much or very often. Our PCP had no problem with writing me a prescription for it, when I complained about my neuropathy to her.
We are both 2 time cancer survivors. My wife tells me that she hung on for me, and I know that I hung on just because I love her and I was too stubborn to give up. I've now been cancer free for a year and fighting every step of the way. Never, never give up!
Hope y'all have a very wonderful season this year (politically correct statement) and that the new year brings everyone relief from this nasty side-effect of "chemo"
Brian