I am new to the forum and told I am in the last week before beginning radiation. Have been to the dentist and received resin deflectors for my teeth and fluoride trays for later. Told I will have 35 treatments (7 weeks) and that I will still be pretty much out of it for several weeks after that. This is throat cancer (P16) diagnosed after tonsils were removed. Chemo port and feeding tube are in my future but don't know exactly when. Mask was molded last week and I return this week but I don't know if they will start radiation until next Monday. What should I expect over the next three months? We have to move by 12-15 and I don't know if I will have the energy to do so. Also told to expect to lose 40-60 pounds which sounds like a lot. Just looking for some input from anyone who has been through this as to what to expect so I can make plans before 3-4 weeks of treatment have happened. I would rather know the worst I should expect and don't sugar coat it. I'm tough and I can handle what I know about. What I don't know bothers me. Any input is appreciated.

Welcome Lolyd, fear of the unknown is sometimes worse than knowing like you mentioned. In a nutshell, prepare for the worst, hope for the best, and pre-planing is a good idea, but some things can go unexpectedly, unplanned, but having an idea is good. Most do well, but it's a difficult 7 weeks, not including the time treatment stops, at which time recovery may be at it's worst. Everyone is different, but I haven't heard many say it was a walk in a park lol.

P16 is a tumor suppressor gene, which positivity is likely HPV, not always, but HPV positivity is a good as far as response to treatment, prognosis.

As far as moving, it depends, but maybe you should plan someone else to move you, if you planned on physically doing it yourself. Other household chores should be planned, in case you are unable to do yourself, shopping, cooking, cleaning, pets, yard work, not to mention seeing in advance your employment benefits, medical continuation, dealing with finances and payment of bills. I don't know if you have a caretaker, but doing it alone, is difficult.

As far as weight loss, the average weight loss is 30lbs in oropharyngeal Tx. I lost 110lbs just from chemo, 40lbs from another time with just radiation. Doctors get concerned when you lose 5% of your body weight. If too much weight is lost, a new mask may have to be made, not to mention other factors.

You will learn, hear mostly about the effects of radiation, but don't underestimate the effects of chemo. Chemo can set you back, more so than radiation, and few don't ever complete the full radiation, but many do not compete chemo due to tje toxicities. You may be having Cisplatin, which is the gold standard. They do base-line testing for many things like creatinine, hemoglobin, etc., but not so much with others like hearing, vision, thyroid, testosterone, which treatment can impact, so if time allows, you may want to look into them. Both chemo and radiation have short, less than three months, and long term toxicities, lasting more than three months.

Usually you have the CT simulation when the mask is made, I did, and then treatment followed on my next visit, if the dentist gave you an all clear to start.

Without covering everything, since it's so much, I'll break it down to some things to help get through. Each can probably fill its own page, and will learn further about.

Adequate nutrition, and hydration
Impeccable oral care
Anti-nausea meds
Pain meds
Treatment for mucocitis
Treatment for dry mouth
Neck creams
Rest/sleep

That's it for now, tired from typing, but look at the OCF pages, which has tons of info, other member posts, and hopefully others will add. If you have any questions, just ask.

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

Welcome Lloyd, sorry to meet here but glad you found us.

There's a ton of information for you to absorb, you'll find it all overwhelming no doubt. Are you married? Do you have someone to look after you? Its much easier if you have a second set of ears when the doctors are explaining everything. Take notes, you can Google words later. But don't go Googling stats and such, it will only scare you and not be in context for your case. It sounds to me like you've got a pretty good handle on the info you've been given so far.

You'll be weak as a kitten by December. I would be planning on getting help to move.

I was 235 and lost 50 pounds. I could afford to lose some of that, and like many I thought I'll just lose some and get it back later easy enough. It doesn't work that way. Getting adequate nutrition and hydration is crucial for getting through treatment, repair and recovery.

It sounds like a cliche but stay positive. Keep your chin up, because it is contagious when it drops. Its a tough few months, but the prognosis for P16 SCCs is better than many other cancers. Its tough, but its very treatable and very survivable. A positive outlook helps you face the day to day challenges, but it also helps those around you.

Some people go through treatment better than others. Its probably the hardest thing you've ever done, but there are a lot of people here who have been through the same treatment. There won't be a drug, side effect or scrambled eggs recipe one of us hasn't been through.

What to do before treatment starts? It sounds like you on top of the dental. Get admin things out of the way so you don't have to worry about them during treatment. Things like getting help mowing the lawn, getting the car serviced, dog to the vet, whatever. If you can get it out of the way now its one less thing to worry about. Eat well. Eat lots of steaks, you will miss those soon enough!

Lastly whoever your primary caregiver is, they will be scared, stressed and wont get the attention you do. Be conscious of what they're going through to, they can be overlooked.

The answer to that question that I was always given was "I don't know", reason that everybody's different.

I am new to this forum, but am 3 years out of treatment. I feel it took me over two years to recover to where I could be, which, of course, is not where I used to be.

But I was older when I was diagnosed and now I'm even older, so false teeth and pain every day is not really a surprise but somewhat expected and someway of a surprise.

Paul is right: was the hardest thing I've ever done.

Good luck and get lots of support.

Gregor

Lloyd Sherman, I am practically your neighbor in Murphy. If there is anything I can help you with, please let me know. I'm not clear if you have a place to move and just need help or what. Let me know, and I will find some help for you.

I was treated at UT Southwestern. I suspect you are being treated at Baylor downtown or Presbyterian up north. If you need a ride or anything, just ask.

Welcome!

As the others have mentioned don't plan to move yourself. The month after treatment was the hardest for me. It takes a while for the cumulative dose of radiation to catch up with you and then a while before it backs off. Each person is reacts differently, but I wouldn't have managed a move so well at the end of treatment.

I worked throughout treatment, but took a few chemo recovery days. Work a full day, drive to radiation treatment, home, rinse and repeat. Day three after each chemo was rough for me.

Water (lots and lots), light exercise and keep up with food as long as you can.