Hi:
I'm 44, non smoker non drinker, I do a lot of sports everyday. I have done 6.5 weeks of radiotherapy and a huge first dose of cisplatyn (200 mg) at the startup of the treatment. No more chemo were given because my tonsil cancer was HPV 16 and the chemo gave me very bad reactions (mouth sores, infection, anemia...). I didn't need PEG tube but I have had a lot of difficulties to eat. I lost no too much weight because my initial body weight was very high 265 lb and I only lost 20 lb mainly of muscle because no sport training.

Now 7 weeks out of treatment I have returned to the gym and I'm
jogging again. I am not taking painkillers because I have not too much pain. I have a dry mouth but the worst is during the night. During the day I can take little sips of water. I need also little sips to swallow any food I put on my mouth. I have some pain in the place were the tumor was. It was located at my right tonsil (4.5 cm x 2.5 cm).
Now 7 weeks post-treatment I have like a withe sore in the point where the tongue meets the right tonsil pillar.

I think 7 weeks is not too much time to all the pain would disappear but I would like to hear any experiences of people. My doctors say this pain is normal but I prefer to hear this from any patient who has passed the same treatment.

I have a CT scan for the middle of September but I' more afraid for my white sore. I make think about recurrence or sometimes I wonder if the radiotherapy wouldn't kill all the cancer.

Best regards ad sorry for my poor English.

Ray, Welcome to OCF. Congrats on finishing radiation. At the 7 week post treatment point, you still have alot of recovering to do. The full recovery can take 2 years. Everyone recovers at their own pace and some bounce back very quickly. Sometimes, big improvements are made early while other large improvements come at the 2 year mark. It all just takes time and everyone is different.

The white spot could be many different things including scar tissue. Make sure you bring this to your doctors attention right away. You are very fortunate to be a case where HPV+ was likely the cause for your cancer. Those groups have a higher rate cure and of no recurrances. Very rarely a HPV+ person will have a recurrance.

Being only 7 weeks post treatment, it is normal to still be in some pain. Also the dry mouth will most probably continue for some time yet. Patience and good nutrition will help you get well. Best of luck with your continued healing.

HPV+ or not, get it checked out.

Hola Ramonet - You have some good advice above. It does take a while and more for some than others but anything that looks different should be checked out with your doctor. In my son's experience doctors thought it might be from HPV-16, too, but he was never tested for this. He did have a lot of painful sores and dry mouth problems. At night, for the dry mouth problems, what helped him was to get a "Plant mister" which is like a spray bottle with water in it but used for misting plants. He would just leave it by his bed and when he woke up, would spray his mouth and throat and that seemed to help him.

Thank you all.

I've been checked two weeks ago but the problem is that even for a doctor it is difficult to judge at a glance if this white zone is bad or not. Perhaps it would be necessary to do a biopsy bad certainly it is too early to do it. My doctor said that in that zone was the main radiotherapy target and that's the reason for this white patch. It would be a very bad luck that being the main target the cancer wouldn't have been killed completely there, but it is possible.

I look this white several times per day and it seems not to grow. I don't know how much time I would expect to do a biopsy.

A biopsy would be a very good idea. Thats the only way to tell if it is cancerous. Best of luck.

I finished treatment (35 radiation treatments and three doses of Cisplatin) for SCC base of tongue HPV+ March 29. I developed a whited patch on the side of my tongue several weeks after. It was painful and it seemed like I was always aware of it. My ENT said it looked like a virus and it would probably go away. Well, it took about 10 weeks, but it's finally gone! Good luck!

Hello Ray. You have a lot of good advice from others here. I will only add that for the dry mouth, which may continue for many years, if there is anything available in Spain similar to our Biotene brand dry mouth products, the mouthwash and gel have helped enormously at night.

Hello, I am about 2 weeks ahead of you and have the same treatment issues. As you can see from my profile we had the same cancer in the same spot with the same treatment except I had two more doses of chemo. There is one spot that still gives me pain and it is also a white spot in the area where I recieved the most treatment. My ENT and radiation doc both scoped me and told me not to worry. I get my 1st post treatment tx pet at the end of the month. The only thing i can think of is 1. it just takes some of us longer to heal or 2. We are not drinking enough water at night and then when we swallow it's like sand paper back there and it is preventing that one are from healing. Keep in touch! Good Luck!

Charles

Hello again:

5 months after the treatment. My first CT in September was good.

Now the problem is that my white spot on my tonsil pillard was dead tissue. Last week I had a little infection and a crater-like hole has appeared on my tonsil fossa. My radiotherapist has said that it was dead tissue that was necrotized. I was terrified because I was thinking the cancer had returned.

Now the problem is this crater in my tonsil pillard. My radiotherapist say that it will be difficult to refill by itself. What do you think? Is there any kind of surgical procedure to resolve this crater?

The size of the crater is like a coin (1 cm diameter) and the problem is that each time I eat some food deposits on the crater and I need to remove it. I use syringe with water to remove the food.

Please give me any information.

I am assume that this defect has actually healed in and is not an open wound. After all the things that have been done to me I have several similar places in my mouth and back of my throat. Food gets caught in them routinely. For me though it is a simple process of after meals, gargling with water over the sink to remove all this stuff. It's a pain when I am out at functions, but most of the time it is only a small inconvenience. But these defects never return to normal contours. I wouldn't consider a surgical procedure to fill in the defects with something, if they go all the way done to boney structure this could be done with hydroxlapitite particles, which is used both by itself or with autogenous bone graft material and then the tissue laid down over the top to heal. HA has been used for some time to repair boney defects.

If this is after the infection, now some kind of open wound, this is another kind of problem. Radiation does make it harder for tissues to heal, in some cases require 02 therapies to get wound healing and closure.

Thank you, Brian.

My crater is more o less healed. It's not an open wound neither bloody but it hurts. I don't know if it going to return to its normal contours with the time. Now it has 1 cm in diameter. For me gargling to remove the food it is not enough and I use a syringe with water. I eat 4 or 5 times per day and this inconvenience could be hard for the rest of my life. I'm 44.

Thank you again.

It sounds like you are not that far away from treatments, so in the first 2 years I can tell you that I had lots of changes in contours both inside my mouth and throat and the exterior of my neck. So time will tell.

But if this was the worst thing that you had to deal with as a result of your treatments, I suspect you will eventually have a perspective that finds it to be a small price to pay for still being on this side of the grass. 12 years out I have learned to live with the many side effects that used to really bother me. I have reached a place of acceptance.... but it took a long time to get here.

Hello:

Now six months post-radiotherapy and my crater in the tonsil fossa doesn't heal and it hurts. It is like a hole with a white and red soft tissue in the center. The borders are undulated and there is like pocket bags in them.

My doctor said it is necessary to do a biopsy. I'm terrified.

I have made a photo of the lesion, you can see here:

[img:left]http://img543.imageshack.us/img543/8251/hole2.jpg[/img]

I know it is very difficult the to distinguish between necrosis or recurrente only looking at this picture.