I am a 70-year-old male with Parkinson's Disease who has just been diagnosed with stage IVa oropharyngeal cancer. The OC IVa came as a complete surprise to me. In spite of the Parkinson's, I was bicycling 20 miles every other day, and walking two miles on the days I was not cycling. I felt perfectly fine--no pain anywhere, no difficulty swallowing, no feeling of being tired, and no loss of weight. My cancer was discovered only because my neurologist noticed a lump on the left side of my neck, which turned out to be a squamous cell carcinoma metastasis from an unknown primary. A review of past photographs revealed that I had had the unnoticed lump for at least nine months without feeling the effects of anything other than my Parkinson's. In the meantime, in an effort to locate the elusive primary cancer, I have had both of my tonsils removed and the inside of my mouth biopsied in several places. My Parkinson's made dealing with just this minor surgery very difficult. Finally, I was sent to Stanford Hospital, a teaching hospital, in Palo Alto, California, where they found some noninvasive in situ squamous cell carcinoma at the base or the tongue, but no definite invasive primary. They also determined that I was positive for HPV. I have never smoked, was never much of a drinker, and have not drank alcohol for the several years that I have been diagnosed with Parkinson�s.

The cancer physicians, of course, want to give me the standard course of chemo and radiation therapy, which could leave me with some severe side effects, some of which could affect my swallowing and intake of food. As Parkinson�s Disease progresses, as it inevitably does, the person often develops swallowing problems. I don�t think I want the treatment. My wife (no children) is appalled that I am balking at the treatment, but I have told her that the quality of whatever life I have left is more important than the length. Just the biopsying has already seriously interfered with my enjoyment of life.

I was wondering whether any of you have had Parkinson�s prior to being diagnosed with OC and had the standard radiation-chemo therapy, and whether you were glad you did, or regretted it. Any guidance you could give me from your personal experience would be greatly appreciated.

Parkie, welcome to OCF! I have moved your post over to when it will get some responses. The post you had written on was an old post so you probably have not gotten a reply as that member only had that one post back in 2009. I was one who replied, another inactive member and a dear friend who had replied has since passed away a few years ago. Im glad you have found OCF so you can get some help with info and moral support with your OC battle. Even with your specific question I am certain this site will be helpful to you with many other things to do with oral cancer.

I have seen many patients in their 70s successfully get treatment for oral cancer. Ive even seen members in their 80s do ok. Its not easy but it can be done and a long good quality life can happen when you get your cancer taken care of.

The best thing I can tell you is to go to a major comprehensive cancer center. They have the most experience in treating more oral cancer patients and those with other health conditions.

Best wishes!

Cancer Center List

Thanks, Christine, for guiding me through this new experience.

Hi Parkie, I'm sorry you have had to join us.
I agree with Christine, get yourself to a CCC . They see and treat the most patients each year and hence are very experienced. They should be able to answer your questions re Parkinson's disease and swallowing difficulties.
I have to say that I am with your Wife on this one. Not being treated is a certain death sentence. Even IF you do end up with swallowing problems, even IF you end up having to take all your nutrition via a PEG tube, life would still be good. Really , in the scheme of things this is a minor problem. Please rethink this issue.
Tammy

Hi there, Parkie!

I'd say that it's nice to have another septuagenarian here, but since I can't spell it (even tho I are one;) I'll just say "Howdy, pull up a stool and make yourself at home!"

I urge you to keep up your workout regimen as much as possible; it will make a huge difference in the way you tolerate chemo; at least in my case, and my MO has come around and agrees. He had never, in over 20 years of practice, encountered a patient who would, in his words, even think of using the words "work out" and "chemo" in the same sentence.

Rather than retype my story, here's my intro which contains most of the advice I'd give anyone undergoing this particular dance. Since we have age in common, you might find it interesting (even though I am not famous for my brevity.)

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=163644#Post163644

Thanks to all who have read and commented. I have decided to proceed with treatment and will have my first chemo on Tuesday.

So pleased to hear this.
What exactly is your treatment plan? Are you having induction chemo prior to starting the chemo / radiation?
Tammy

Awesome best of luck with treatments.

Michael, Im wishing you all the best with your treatments!!! Please dont be a stranger around here. We will help you get thru this. Its not always easy but you have us in your corner!

Best wishes!!!

Does anyone know anything about a University of Michigan study investigating potential benefit from Nisin? Here is a link. I was surprised there is nothing about it on this oral cancer support site. I would especially be interested in information regarding follow-up clinical trials.


http://www.ns.umich.edu/new/releases/20945-common-food-preservative-may-slow-even-stop-tumor-growth

Im sorry but there are so many studies being conducted out there that it can be hard to keep track of them. You wont find a list of studies here. Its just not something I am able to research and continually update to keep it current. Its a monumental task that would require more time than I could ever devote to it. Im speaking both for myself and the other admin, none of us who do our admin duties as volunteers simply have enough time to take something of this magnitude on.

This trial was not conducted on humans, it is years away from that. As it turns out it wasn't even a blind trial in animals, but a very preliminary look at this in the lab. If this turns out to be something useful down the road is a long way from anyone knowing. Funding in this economy for a long shot like this will be hard to get to move it forward. Human clinical trials may or may not ever get funded. Application from those trials to a usable treatment or pharma application all the was through the FDA�. decades perhaps.

Had my first chemo (cetuximab) on Tuesday. became violently ill Tuesday night: vomiting, chills, 102 fever. Was so tired on Wednesday I could barely make it through the fitting for my radiation "mask." Slept and did not eat much on Thursday. Thursday evening I perked up and went for a 1.2 mile walk at 9PM. Slept well Thursday night and went for a 2 mile walk this morning (Friday) at 6:45AM. I was supposed to begin my radiation on Wednesday, but Stanford just called to push it up to Monday, followed by second round of chemo on Tuesday. My appetite has returned, and I intend to get some exercise this weekend. I hope I am ready. Ever since chemo my Parkinson's symptoms have worsened, but I am still functioning reasonably well. So far no regrets, but I am only at the beginning.

Usually the first day with erbitux is a boost dose, around 450mg, and thereafter around 250mg a week. Hopefully it gets better.

Parkie, I have Parkinsons and went thru induction chemo and radiation and am doing well, I was treated at a CCC and recieved the best Tx. I am some what younger then you but you can make it thru this. You can PM me if you want, I might not get back to you for a couple of days due to work etc. Semper-Fi Bob