Hello, everyone. I was diagnosed in early April after an allergist found an enlarged lymph node that didn't go away. I've never smoked and don't drink much so my doctor wasn't all that concerned but after 3 weeks we did a CT scan that turned up SCC in the right tongue base with a couple of nodes. A PET/CT scan confirmed this but showed no metastatic spread. A tongue biopsy followed and then a lot of meetings with various doctors until I settled on a treatment plan.

A neck dissection followed and then the pre-radiation "sims" and dental shield. Had an "induction" round of chemo because the neck biopsy found a Level 3 node that didn't show up on the scans and all 3 were extracapsulated.

Just had a port put in for the chemo, my 3rd surgery in the last 6 weeks. But all the pretreatment stuff is done now and I'm waiting to begin radiation and chemo on June 4th. I'm a bit nervous but also very glad to be starting the primary treatment. It seems like forever since the initial diagnosis and I know this cancer moves fast.

I am very glad to have found this Patient Forum. My wife has had breast cancer, twice, both 12 and 16 years ago and I know how much that Forum meant to her.

At the same time, I admit it's been hard to write this first post. I've always been a very private person and much more comfortable taking care of others than asking for help myself. So I see that this cancer is also an opportunity for me to go beyond a lot of self-imposed limitations. My wife says that she's much happier now, after the two cancers, than she was before. I always understood that intellectually, but now see it in an entirely different way.

I have some questions to pose to the group but will put them in separate emails later.

David R

Welcome, David. The first step can be the hardest, and you've already taken it.

To help you get started, OCF has two search engines. The one at the top of each of these forum pages (in the center, under the New Topic/Post Reply buttons) links to a search of the message boards -- be sure to search "All Open Forums" to maximize your results. The link at the bottom of each of these pages (toward the right in the dark gray area) goes to a search of the main OCF site, which Brian and other administrators keep updated with the latest treatment protocols, news articles, reports in scientific journals, etc. It also includes a lot of basic reference material about oral cancer.

And if those don't address whatever you want to know more about, the people on these boards can answer any question you throw at them.

We'll all be thinking of you as you begin your treatment next week.

-- Leslie

Thanks, Leslie

This is very helpful information. And you're right, I felt much better after sending that first post. It's amazing how hard it seemed before and how easy it seems now.

All best,
David

Welcome, David and Best luck with your tx. OCF will be a great help to you [and your wife as caregiver]. Don't hesitate to "ask away". Take care. Amy in the Ozarks

Thanks, Amy. I feel good to be finally connected to the group. It's been something I've been putting off for a month while lurking in the background. Reading the many posts has been very helpful but I'm glad to finally be fully participating. David R

David,

Have you been tested for HPV? Judging by your post I would assume you would test positive.

Thanks for the reminder. I have not yet been tested for HPV and, like you, assume I would test postivie. It's on the long list of things I still need to do.

My wife wonders if she should also be tested -- do you know anything about spouses?

David R.

Welcome aboard David,

I did the same thing as you have done and signed up and kinda sat around in the shadows for awhile. I now only have 3 Tx to go and am looking forward to a more " normal " life. As you can see I have returned here and I can promise you that you will find none better for helping with your needs than the ones here on this forum.

Hi David, there's tons of information on this subject that you can find by doing a search on the forum and the home page.

The testing process for head and neck cancers caused by the HPV 16 virus is done on your tumor slides, and not all hospitals do the test. We had Jack's slides sent to Johns Hopkins in Baltimore because it wasn't available locally.

That said, it won't change your treatment plan. We didn't worry about it until after he was thru the chemo/radiation - too much going on. Jack's was positive but there are others on the forum that also had no risk factors and tested negative. About 4 months after treatment Jack participated in a clinical trial at Hopkins testing a vaccine. This is only a phase 1 trial so they don't know what the best dose is or if it will work in preventing recurrence. It is not the same as the guardisal vaccine you are probably seeing ads for on TV for cervical cancer.

The test for your wife would be handled thru her GYN, that's a simple process. I think that's a good idea in general and please feel free to have her send me a private message if she has specific questions.

Good luck next week. This too shall pass. Jack found the mask was hard to deal with and used Ativan for that. Make sure you are getting between 2-3 quarts of liquid as well as 2200 calories or more daily. That's the best way to assist your body to handle the treatments. Are you going to have amifostine injections? If so, it's even more important to stay well hydrated. Keep swallowing and stretching your mouth muscles open and closed to prevent trismus later - also lots of information on that subject.
Regards JoAnne

Thanks, Billy and JoAnne. I appreciate the warm welcome and the good advice. I am not having amifostine injections. I will ask the docs about that. I plan to read more on the forum about dealing with the effects of these treatments. I did not have a problem with the mask during the sim and the follow-up x-ray, but who knows how the actual treatment will go. I take Klonopin when I feel especially anxious. Thanks again, David

Hi David,

I really don't have anything to add to what has already been said except to welcome you and wish you good luck with the rest of your treatment.

Jerry

Welcome David! There is something to be said for our changed perspectives after cancer, we seem to appreciate what we have so much more.
Take care,
Minnie

Thanks Jerry and Minnie. I'm glad to be part of the group. David

Welcome, David. Lots of great information here, which is really useful when coming up with questions to ask your treatment team.

I am in the middle of treatement for BOT SCC right now, and so far (2 weeks in), it is doable. Annoying, but doable. The waiting for treatment to start is hard. Set goals for yourself, reward yourself and get plenty of rest. Also, fluids, fluids, fluids. I thought I was drinking a lot, but you really need to pile on the liquids. I am still eating everything (though it all tastes the same), which I attribute to lots of hydration.

Welcome David
your on the starting grid and ready to go and this site will give you all the ammunition you need to beat this disease to the finishing post

Good Luck


Liz in the UK

Many thanks, Jeff and Cookey. I really appreciate the advice about pounding the fluids, and your very encouraging words about the treatment. I have been reading lots of posts and am really glad to have found this Forum. All best, David R

Well, David, has it dawned on you that you are going to be so busy reading and answering posts that you won't have time to be too sick? Amy in the Ozarks

Hi David;

I'm pretty new too, and at first I was overwhelmed at the response from this forum's members. They really helped me feel comfortable about having the disease (if that makes any sense whatsoever...) and sharing my situation with others. Before long, I felt I had become part of a substantial force that had harnessed the collective mental energy of thousands of cancer survivors who were focused on a common objective.

After reading many posts and replying to a few, I realized how therapeutic sharing information and trying to help others could truly be.

So even when you are looking for help, you are, in turn, helping someone else. A form of perpetual motion.....?

Welcome, and best of luck with your treatment !

JT2

WELCOME DAVID,

You will find much support and many answers to your questions on here. I didnt have Rad so I cant answer any of those questions, But I am def always here to listen and answer any that I can !!!


Shar

Thanks for the warm welcome , JT2 and Shar. Once I got over my initial hesitation it's been great being connected to so many people who understand what's happening. David R

Welcome David

I see many have greeted you but the more the merrier. I just had surgery and will be starting radiation Tx in about 3 weeks.

I have a question for you, or maybe someone else will answer it. It appears by your stage that it was caught early, but I do not know what the G3 means after the M0? Also, 5 Erbitux and 48 IMRT seem excessive for a T1N2bM0G3. I usually see 2 to 3 chemo / plus 30 to 36 IMRT as an average. Can you explain this.

Thank You. And Best Wishes in your TX. sincerely, Petey

Thanks, PeteyB

I believe the G3 is because more than one node was involved and they are all poorly differentiated.

The 48 IMRT is the protocol they're using now at Mt. Sinai in NYC -- 2x/daily radiation for 24 days, with a total of 72 Gy for the entire treatment. Radiation and simo chemo is done for 5 days, then a week off, then another 4 rounds of alternating "on/off" weeks, so it's 5 weeks of treatment over a 10 week period. The Erbitux is part of a Phase 2 clinical trial I've joined.

David R