Here's the deal:
In October 2001, I developed a sore throat that wouldn't go away. I guess
I waited two/three weeks before going to our family practitioner. He, being
an Arkansas hillbilly, looked into my throat - and said "damn, what the hell
is that?!"
Well, after a biopsy, the diagnosis was squamous cell carcinoma of the uvula, that little finger that hangs down at the back of the throat. Treatment regimen, with
my agreement, was 7 weeks of radiation therapy. After about 1-1/2 weeks of radiation, we did a CT-scan and discovered that there were two lymph nodes in the neck area involved. So at that time, the radiation field was enlarged to include the nodes. So we went thru the 37 radiation treatments. That was awful.
Ok, we're to the end of January 2002. Everything seems to be ok, 'cept I still can't eat. Lost 68 lbs.
Comes April, the ENT surgeon sees something he doesn't like. Does a biopsy,
and guess what! It's BACK! In early April, they remove my uvula and a good portion of the soft/hard palette.
Summer was really nice. We have an RV on the Lake of the Ozarks, and I spent every weekend there.
In August another gray spot showed up, and I lost more of my soft palette. Then came November and another spot. They first did a biopsy, tried to get it all, but discovered they hadn't. So back to surgery again in November.
The pain from the surgery wouldn't go away so I ended up under the CT scan again. This just raised questions, which led to the MRI, which led to a needle biopsy while under the CT scan, which led last week to major surgery on the left side of my neck.
Net result is that I still have SCC, and that it has gotten into the base of my skull. Dr. says they can't go after it there because of the carotid artery and the jugular vein.
So, again, I'm new - not to cancer, regrettably - but to this site. I will certainly appreciate your help, your thoughts, your prayers, and most of all your suggestions and advice. Doctors don't know it all, do they?
Joe M.
Hey Joe,
I certainly can relate to your life. I have had three surgeries to my neck and vocal cords and they thought they got it all but--wham itssss back. Now my cancer has moved into my lungs, stomach etc. I am still keeping the faith though. I am not sure but you may want to read about the Gleevec studies. They have had some promising results in trials.
Thanks, Becky. I appreciate your response.
I haven't been able to find anything on "Gleevec." Can you point me in the right direction?
Joe
Your welcome Joe,
GO to the NIH website. The National Institute of Health--and they have tons of studies. Gleevec is a new drug that they are using with some promising results. Its expensive but you may be able to get into a study.
Good luck
Becky
Hi Joe,
My prayers are with you and you are right Drs. certainly don't know it all. I was diagnosed with a metastatic lobular carcinoma of the right breast. Every year I faithfully went in for a mammogram but guess what this type of cancer does not show up on mammograms - something the docs don't talk about. The best part is the cancer society says only a certain percentage of cancers do not show up on mammograms but do they tell women what they are -NO- so I guess I am part of the percentage that gets lost in the shuffle. I also am new to this site. It's good to have someone to talk to.
I found this cancer myself only 2 months after I had a mammogram and got a clean bill of health. I went in and had a biopsy and the dr. (female) who did the biopsy gave me nothing to put me to sleep- they injected something to numb the outer breast - needless to say I felt everything she did once she got me open including the stitching when she was done. This I will never forget and the pain she put me thru. Naturally she did not get the margins so I decide to go off to Roswell Cancer Hospital in Buffalo and as me mom, sisters and brothers live there decided to have the lumpectomy they said I needed there. Again, the margins came back involved. I live in Pa. - my Dad passed away so I decided as my mother was 86 I did not want to go back to Roswell because now I was being told I needed a mastectomy and did not want to put my mom especially thru this as she was taking my father’s death so badly and she herself is not well. I found out about a breast surgeon at West Penn hospital and went to see her. She was the only dr. I found with a BRAIN. I was a medical secretary in pathology, for a hospital administrator in New York and an office manager for a doc in private practice here in Pa. Let me tell you - you need to do as much reading and asking questions as possible about your condition and always remember YOU ARE THE ONE IN CHARGE OF YOUR TREATMENT ONCE YOU HAVE ALL THE FACTS. I am running my own show as far as this cancer is concerned and have no regrets and so far so good. It was 1 yr. since my surgery Sept. 17, 2002. Hope everything goes ok for you and as I said I will keep you in my prayers
Hey, guys, thanks for your thoughts, suggestions, and especially your prayers. This afternoon I get to go in and get out some 100 or so staples from my last surgery on the 14th. They left them in so long because of the radiation damage. Needless to say, I'm not really looking forward to this.
Need a favor from you all. My sister-in-law, Peggy Bridges, who lives at the Lake of the Ozarks in central Missouri, has inflammatory breast cancer. She has completed her chemo and is now doing gene therapy in prep for surgery in April. Talked with her this morning and she was pretty down. Seems her mouth is full of fever blisters and she can't eat. Having lost 68 lbs. myself while doing radiation, I know what she's going thru. Please put her on your prayer list, and drop her a note of encouragement.
Incidentally, when it rains...my Mom died last night. She was 92 and we were expecting this, but...
Dear Joe,
Sorry the road has been rough. I just wanted to encourage you to stay as strong as you can mentally, emotionally and spiritually. All will help you cope with the day to day struggles of cancer and the side effects of treatment. You are in my prayers. I'll add you to my prayer group list. Pat
Hi Joe, first like you were I am now new to this but not the "Beast"…how are you doing now? My song is to0 long to go into now, but in short I've been diagnosed a year ago this August with renal carcinoma. Things really aren't going well because I've developed pains in my lower back. Preliminary results are pointing towards my pancreas…Please forgive my lack of detail in this matter. I agree with you 110%, Drs.don’t know everything. Is there anything you haven’t done? You’re in my prayers. Please write.
Robert Gl Johnson
hi
Dear Joe: Sorry for your pain both physical and emotional. You have been through so much I can’t imagine! I am living with renal cell carcinoma and have been since October of 2002. Presently, I am participating in a clinical trial out of Boston, Massachusetts. We are of course, hoping for the best. I don’t think doctors have all the answers, in fact they will tell you they don’t. Most of the answers are a combination of so many factors...one important factor is mental attitude.
I dropped my first oncologist, because he wouldn’t help me fight. I will not go without a fight, as I am too young to go yet. I am 53 yrs old. Want to hang around for a number of years yet!
Anyway, you have got to take control of your illness and fight hard, as you are doing. I admire you for your courage and steadfastness (did I spell that right? LOL)
Any way, you hang in there. Get on the net and see if there are any clinical trials you might be eligible for, ask your doctor. Be active, and stay active as long as you possibly can. It ain’t over till its over!! Remember that. Peace and prayers, Angie
Hi Joe!
Boy you sure ARE having the rain right now! But, storm clouds always pass over and disapper! If you have faith anything can be!
God Bless You!
Dave