Hi, all. I was referred here because I keep up with WinSanTor developments. My situation is somewhat unique.
I had base of tongue cancer in late 2014. I had chemo (Cisplatin) and radiation, which ended in mid-December 2014. By March 2015, I had developed numbness and tingling in my hands, which eventually spread pretty much to the whole upper body. Today, I still have the numbness and tingling in my hands and arms, and even into my shoulders and both ears, but fortunately minor pain. I have no lower body symptoms at all. I have a significant loss of dexterity, worse on the left side. The right side did improve some over time.
I have had and tried all kinds of treatment from the very start: therapy, medications, tests, etc. I even tried scrambler therapy in Florida; Dr. Stephen D’Amato, to whom I was referred after discussions with Dr. Tom Smith at Johns-Hopkins. Dr. Smith said give it a week and if it isn’t helping it isn’t going to, so that is what I did. (While I was not real confident about the people administering the treatment, it seems to help patients with pain, which I don’t have). It didn’t help. Nothing has helped. I ran across an article about WST-057 clinical trials.
I would try just about anything to get normal use of my hands back. I have the problems typically associated with neuropathy…dropping things, no feeling, constant tingling, loss of upper body strength, trouble with buttons and zippers, typing, etc., and a myriad of other things caused by the cancer treatment. I call it the gift that keeps on giving. I have become used to most of it, most of the time. However, perhaps the worst effect has been my loss of ability in music and tennis. I am 65 years old and had played guitar since I was ten. I am still a collector and try to play, but chords are a nightmare. I switched to bass with enough success that I enjoy it, but I will never be that good.
Tennis was my other past time. I was a pretty good player, with a pretty good serve. The serve is now gone, my ground game is so-so but not like it was. I still play but not often, and when I do it can be pretty frustrating; enough to make me sit in the car and cry more than a few times.
It isn’t that I don’t appreciate the fact I beat the cancer, at least so far, or that I would have made different choices had I known all the things the treatment would do to me. I would have done exactly the same things, because the goal was to beat the cancer. But I have a stressful job as a trial attorney. Guitar and tennis were my outlets for stress, but now those things are almost stressors themselves. I lost 110 lbs. during treatment, so I feel great about my new looks, but it would be great to feel my hands again.
So I press on, hoping for some kind of medical miracle while I am still young enough to do the things I lost.
Thanks for indulging me!