Fishman, someone should think about that for a fundraiser for OCF! I would totally be in - I'm using my oral cancer as a draw for singing at a Habitat for Humanity fundraising party in the spring of 2014! I may be terrible, but no-one would have the balls to say it anyway, I'll just be "so brave" LOL!

Tina,

That's interesting you bring that up. Before my treatment started, my friend and singing partner (I play solo and in a duo) helped to put together a benefit for me to help raise funds to cover my expenses while I underwent treatments. Ironically her partner suffered from BOT SCC HPV+ and went through treatment 2 years ago. he's now NED for two years. At the benefit, we spoke about oral cancer and HPV to raise awareness.

During my treatment, my caregiver and I stayed at Hope Lodge in Baltimore. During our stay, several groups, churches etc. came by and donated their time and resources to provide dinner to the people staying at the lodge. There was a couple of times they had entertainment as well (a magician and a classical pianist).

When I get better (and hopefully regain my singing voice), I will contact the lodge and arrange to provide an evening of entertainment, head down and do a set for the folks there. I would also be happy to donate my time to an OCF fundraiser should one come up within driving distance.

"T"

Hi Josh, and welcome -- I'm sorry about your diagnosis, and that your surgery was so rough. I hope you have smoother sailing from here on.

The American Cancer Society offers scholarships to college-bound cancer survivors and patients, maybe that would be of interest to you.

You have a beautiful spirit, stay strong!

Hello everyone, sorry I kind of disappeared for a couple days. I had dentist appointments to get filled for my fluoride trays and I had my radiation simulation and a lot of family wanted to see me. I start radiation tomorrow. IMRT 15-17 minute sessions Monday - Friday for 7 weeks. I believe they said 38 treatments. Or was it 33? Let's just say 6.5 - 7.5 weeks.

The simulation was so uncomfortable. Stiff table, mask molded tightly to your face, have to stay completely still. I'm so glad I'm not claustrophobic. I'm not even sure someone with that fear would be able to go through with it. They said the simulation was perfect, so I guess I did pretty well with not moving. I'm definitely not looking forward to the next year of my life, let alone just the radiation treatments. I know it's going to be a long road to recovery. I've been stuffing my face full of delicious food since it's likely that I won't be able to eat from the side effects. Of course there is the chance that I am one of the lucky ones who avoids too many serious side effects but just in case, I'm enjoying it while I can.

I had a question if anyone has been through it. My dentist scheduled a teeth cleaning for the 31st, which will be a week and a half into radiation, and I know that the radiation will make my teeth sensitive. I was just wondering if the teeth cleaning is going to be a bit uncomfortable because of the radiation?

This probably should be done before you start radiation. Everyone reacts a little differently. You never know, you may be one of the ones who has mouth sores already starting so you wouldnt want to do a cleaning with that going on. Always best to get all this stuff taken care of in advance. I would ask them to squeeze you in or to be put on a cancellation list in case another patient isnt able to keep their appointment.

Plus when going thru chemo/rads your resistance will be low so avoiding crowded waiting rooms when possible is a good idea.

Good luck with everything you have coming up!!!

Hi Josh,

I had to have my teeth totally done and checked out prior to treatment complete with a letter from my dentist before they would begin treatment at Johns Hopkins. While a week and a half into rads isn't that long, I would still check with your RO about that.

In the mean time, while you're waiting for your fluoride trays, at least use a fluoride rinse. My dentist actually prefers that I do the rinse as opposed to the trays. He recommended the Listerine kids rinse (the blue stuff). I use it twice a day after brushing. He does a fluoride treatment at my visits. It's imperative you take care of your teeth during and after treatment. I recommend the Biotene Dry Mouth toothpaste as well. Both the toothpaste and the rinse didn't burn my mouth even when the sores were running rampant.

My teeth were very sensitive from about 4 weeks in until about 4 weeks post. They're fine now. Scheduled for my first post Tx cleaning next month. Remember, no more deep cleanings. I just got a water pik and it helps a lot with daily oral hygiene.

Good luck with the treatment! I'm not going to sugar coat it, it's brutal, but you'll survive. Try your best to heed the advice you've gotten thus far.

Positive thoughts and prayers

"T"

I agree with Christine, teeth cleaning should be done before treatment, due to risk of infection, and you may want to check on post treatment. i heard somewhere, probably hearsay, it's around 3 months. Even during treatment when flossing, if the gums bleed, you may want to discontinue for the same risk infection, but check with your doctor.

Thank you all for the suggestions. I will definitely talk to my RO tomorrow. My dentist knows about the radiation starting but he still scheduled me for a cleaning. He seemed pretty confident there wouldn't be any problems, but even though he is a professional I think people who've experienced this would know better. I didn't even think of infection, my main thoughts were about how sensitive my mouth will be. I keep forgetting how vulnerable my mouth is going to be to infections. I just saw a commercial for biotene today and I was going to ask my doctor about it, funny that you recommend it! I've already received my trays, I was fitted last Friday and got them this past Friday. Getting the molds was awful I pretty much spent a minute almost vomiting until the mold came out. Just horrible.

I don't know if it's nerves or what, but it's 2AM and I can't sleep, my radiation starts in 6 hours. Anyone else have sleepless nights?

Wishing you all the best with your first day of being on the path to be well again.

Insomnia seems to go hand in hand with OC. I still suffer from it.

Your dentist has NO IDEA what you are about to undergo so either get him to see you ASAP or quickly call another dentist. There is no way to tell what you may feel after 1.5 weeks of rad. I hope we are only talking about cleaning. I hope your dentist has already checked your mouth for cavities and fillings, etc.