My Colon Cancer Story And That Nasty Neuropathy

On 1/25/2007 Rosythorn wrote:

 

On 12/12/2006 Sir Brian The Lion wrote:

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

 

Hi Brian - I'm not dealing with cancer but I am dealing with peripheral neuropathy, which is how I wound up at a cancer website and read your posting.  I was struck by your comment that you were never advised that PN could be a side effect of cancer-treating drugs - this is exactly what I was thinking, but coming at it from a different direction.  I was searching the web for an explanation for my numb, tingly hands and feet when I stumbled upon PN, and I would NEVER have known about its relation to cancer therapy if I hadn't, on a whim, typed the words "fried nerve endings" at google and got taken to a cancer survivor website, where there was SOOOOO much more info about PN than I had found anywhere else!  I kept thinking, if the doctors know the drugs cause PN, why the hell aren't they doing something to counteract that????  These poor people already have cancer, do they need PN too???  And if it's that common, why isn't there any research going into it?  Why don't they already know how to prevent it for the benefit of cancer patients, if not for little ole me?  I've been to two neurologists and neither of them could figure out what was wrong with me, after hundreds of dollars of tests and MRIs - if the Internet didn't exist, I still wouldn't know.  I've been treating myself for about 2 years and am always looking for new possibilities - haven't tried Neurontin, just started L-gluthamine, also take huge doses of multi vitamins and extra B-vitamins, herbs, big doses of Vit. C (I have more faith in Linus Pauling than I do in doctors), plus the usual massage, prayer, flat shoes, etc.  Oh yeah, and gave up wine (sob!).  I think it would be VERY interesting to find out how many cancer patients were advised about PN before starting their treatments.  It's not like it goes away, and in my experience the longer you have it without treating it, the worse it gets. I see your posting was only a month ago so I hope you get this message and hope you and your wife are both doing well. 

Rosy

Hi, Rosy:

I'm glad that I was able to shed a little light on your probem, if only a glimmer.

 The reason I wrote my message, was to try to see how many other people there were out there who had never been advised that PN is a side effect of cancer (and possibly other treatments).  I think that if there were enough people who suffer this disability who had never been advised by their doctors that this would probably be a permanent thing (my doctor told me that it would probably go away in about a year), then I think we might have a very strong case for sueing the drug manufacturers.  I don't blame the doctors, because the drug pushers (sometimes called detail people) don't see fit to tell the doctors of this side effect, or else even they don't know because the drug companies don't tell them.  In either case, I believe that all of the cancer drug companies know which drugc will cause PN and they ought to held accountable.  (Hmmmm what a redneck I am!)  Any thoughts on this?

 Brian