I am joining the site today, I was recently diagnosed with cancer in the base of my tongue. I am told I have a T2NO , I have been through the biopsy, consultation and swallowing evaluation. I have been set up with my simulation as well. I did take the time for a second opinion which was very different from my first. It created quite a roller coaster of feelings. I begin radiation only treatments on January 11th with two treatments scheduled for each Friday. I am fortunate to have great support from family, friends, good Doctors and most importantly , my Wife. I am thankful I caught this early, of course all of the side effects I have been told about have me concerned. I guess we just take this one day at a time.

Thank you

Leonard

Hello Leonard, I'm sorry that you have need of this wonderful supportive site, but glad that you found us. I'm a bit confused by your treatment plan. You say that you will be getting two treatments on Fridays? Most Base of tongue patients are treated with 35 radiation sessions. One a day for 7 weeks.
Keep posting here with any questions you have. Someone will have experienced whatever is concerning you and will give advice. Christine will be along shortly with great advice on food and fluid intake . She knows what she is talking about.
Hello also to your Wife. Caregivers are amazing people who make this difficult journey bearable.
Tammy

Thank You for your reply. I am told based on the cancer and depth there have been studies that show an additional treatment per week helps with the process. I was also told if my cancer was a little worse there are studies suggesting less radiation to treat this type of cancer. For clarification treatment will be Monday through Friday with two treatments on Friday 6 hours after the first.

Leonard, welcome to our family. We're all here to support you. Please visit often, ask questions, complain, whatever you need. It's a tough treatment but with your support system I'm confident you'll come through it!

Leonard, welcome to OCF! There are several members from PA, including myself.

Im glad you have a great support system. Make sure you write down contact info for anyone who offers their assistance. Let them know that even though you may not need anything right now, but down the road you may need some help. There are a million small things that friends or extended family can do to make this go easier on you and your immediate family.

The best advice I can give you is to focus on what is within your control, your intake. Hopefully you will be one of the lucky ones who sails right thru their treatments with barely noticing any of the side effects. Ive noticed the ones who get thru this the easiest seem to be the ones who do the best with their intake. Also, those patients usually are the ones who arent given chemo with their rads.

Usually after a few weeks of rads, your swallowing and sense of taste will change and even your favorites may be become unappetizing. Push yourself to take in at least 2500 calories and 48-64 oz of water every single day, it will make this easier for you. Those are the bare minimums, the more you take in the better. Even 3000 or 4000 calories are not too much during treatments and recovery. I know it sounds like alot but its not, your body is not only battling cancer but trying to repair itself as well which burns up calories at an incredible rate. Check with your treatment facility about seeing a nutritionist as part of your team.

Have you been to the dentist to get flouride trays made and any teeth that arent in the best shape pulled?

Stick with us and we will help guide you thru this. We have been where you are and know how apprehensive we all were when getting ready for rads.

Welcome Leonard,

There are different types of ways to deliver radiation in daily fractions, have different names, and have heard of the radiation treatment your'e having with the 5th day being twice daily, 6 hours apart, which may be called Accelerated or Concomitant Boost Radiation, while some go in for a 6th day, and treatments weeks may also be reduced to 6 weeks instead of 7 in some cases. I'm assuming it's IMRT as well.

It's not mentioned, but the best prognostic measure at this time for oropharyngeal cancer is if it's HPV related or not, if you don't already know. I believe it's required these days to test the biopsy anyway, although they may test p16 positivity only first, but if that comes back positive, then it should be tested for HPV since it can be p16 positive without it being HPV related.

Glad you have the support to get you through treatment, which my be half the battle, and suggest you educate yourself with the treatment section here as to what is likely or less likely to occur, and some prophylaxis to reduce treatment toxicities.

http://www.oralcancerfoundation.org/treatment/

http://www.oralcancerfoundation.org/facts/radiation-side-effects.php

Good luck.

My husband had the twice a day radiation sessions a couple of times during his first radiation treatment as it spanned the Christmas and New Year Holidays when the hospital was closed. You might feel a tad more tired on the day after than on the other days. Sitting around waiting for the second session could be a pain. If you are within driving distance, you may want to consider going home and coming back later. Check also if the hospital has a radiation care clinic that you can go to and lie down to rest in between the sessions (we have this at our hospital). It is not a big deal, don't worry about it.

Thank You to all who have posted. I have not been on the site in a little while. It is currently 4 AM here. Today I will have treatment number 5 in the morning at 9 an treatment 6 at about 4PM. This will make the end of week one.

Day one treatment one: First while they test the machine to make certain it lines up then they begin the first treatment. The mask was not so much the problem as were the shoulder clamps. Halfway through the first treatment the machine lost its calibration and the session paused for what seemed like an hour, I know it was less than that, the total time was an hour. My shoulder was hurting and I could not get off the table as engineers climbed over me to recalibrate the machine.

Day two- uneventful, in and out in a reasonable amount of time.

By now I am making friends with people who are in the same time slot as I am.

Day three- day I meet with the Doctor as well. The machine is broken and the waiting room is backed up. Everyone who meets with the Dr. on Wednesday meets with the Dr. first to keep the progress going. Finally my turn on the table, the mask goes on and I feel very uncomfortable , too tight in the neck area. They let me up, now I have my first panic attack over this. I waited for a while and a anxiety pill is provided. Still not ready to get on the machine. Dr. offers to give me a pass for the day but no way I am delaying this process by one day. I finally got through it.

Day 4 I arrive the machine is down again, They are moving people to a different room while repairs take place. I don't know if this is unusual but 3 days out of 4 the machine is broken.

I can share without sharing names, the place I am going to the people are nice, both the ENT and the ON Doctors are great. I don't know that I could have found a nicer better team with such a great reputation. When I say this I am certain there are equally nice Doctors but these guys and their team are wonderful.

How do I feel as I am getting in to the end of my first week. Overall I believe I do feel the impact of the treatment, nothing uncomfortable yet. I do know what is to come and although I was told it is not acceptable, I am looking forward to losing some weight, just not the way to do it. My biggest discomfort today is my shoulder and not the one that hurt under the original day clamp. Stomach also a little upset today, IU assume it is just nerves at this point. At the recommendation of friends and even a conversation with the rehab person I have decided to proactively try Acupuncture for the pain. First session will be Saturday, not sure how this will go, I can only continue to remind myself, one day at a time.

You were correct waiting around was a bad idea. I found a couch and slept gor a while, I need s better plan.