Had surgery two weeks ago for a tumour in the upper jaw. Will be undergoing radiotherapy shortly. Would love to hear from anyone who has had similar experience. At present adjusting to the rather boring diet!

Hi Maggie, You need to talk to Vicki Lynn. What kind of diet are you on? I'm on a Baby food
diet not bad. I'll say a prayer for you.
Cathy

Hi Maggie, I had a tumour in the lower jaw, still undergoing surgery although i can say ive been lucky in the respect that i havent had to endure the radiation - my thoughts are with you. shelley

Thanks Cat and Shelly for your replies to my message. Have had computer problems recently so haven't been able to get online. Am starting radiotherapy early next month. Dreading experiencing some of the side effects I've read about. At present feeling fine though I mss being able to eat properly and the temporary obdurator in my mouth causes some of what I eat or drink to go up my nose. Not pleasant!

H Maggie, hope your pain levels are not too bad, I'm one year on and food is getting better, do write us and keep us posted, as I have found more information here than at the hospital, we are the ones that know how it is, and let's face it the Doc's and nurses have not had the 'ops, we have. Big Bear Hugs

Hi Maggie

Just wanted to send positive thoughts to you

Hi maggie. I'm Steve. good luck with the Radiotherapy. I had three point rad treatment for 6 weeks which is heavy and the side effects were most unpleasant. 2 years on and i still have dry mouth, tight neck muscles and slight throat restriction but i can handle this ok now as i'm over the very worst of it. I lost an awful amount of weight during and after treatment as i did'nt want to feed through that blasted stomach peg but take it from me that keeping up your nutrient levels and keeping your weight up will give you strength. You'll cope, with the knowledge that everyone on this site will be giving you their full moral support. You will also need the patience and understanding of your closest loved ones as it can be a very depressing time recovering from treatment. Good luck with everything Maggie and keep us posted.

Hi Steve,
Jerry my husband puts everything possible to that feeding tube. I agree it helps to have all the nutrients. I get a little worried though he used to like his beer. He now adds some Jack Daniel to his feeding tube.

good luck Maggie

Any questios you ask

Paul

Thanks Steve for your message. I start the radiotherapy this Wednesday - the 11th.Had the verification procedure last week - took ages to get all the measuremants right so I was bolted down in that mask for well over half an hour! At least the treatments won't take so long but it is not going to be easy doing it every day for 6 weeks. It takes about an hour to get to the hospital in cambridge and its very difficult to park there so usually use a park and ride service. All a bit tedious but if it gets too much for me to drive myself my husband will take me. he's retired so no problem. They've warned me I will probably be feeling pretty bad by the second half of the treatment. At the moment I feel really well and back to normal apart from the problems with the obturator and my stiff jaw - can only open my mouth one finger width - so not looking forward to feeling grotty again. But I don't want the cancer back so I'll stick with the treatment whatever. Someone told me I would probably feel tempted to give up at some stage when the pain gets bad. Will do my best to keep the weight up but I've lost ovet a stone in the last 3 months even though I am trying to keep up the calories. Difficult when some food goes up my mouth and everything has to be soft and either pureed or cut up into small pieces. I'm eating a much more varied diet than a few weeks ago but the jaw opening is a real problem. I keep trying to exercise it but it gets no better and they say it may get worse on the radiotherapy.Help!
I wonder if anyone else reading this has lost hair with the radio and if so has it come back? Because one of the 4 beams goes in behind my right ear I will definitely lose hair at the back of my head - I've got short hair so no way of hiding it - and I may lose some on the other side where the beam comes out.
Anyway, thanks again for your supportive message.
Best wishes, maggie

Just wanted to say thanks too to the others who've sent a message. it is good to have this support network. I've found the staff at the hospital great but haven't met anyone else wh's had oral cancer.

Hello Maggie

Good luck with the radiotherapy. Try to practice this simple relaxation exercise and the positive affirmation tip while having it done, and visualise healing rays from the machine. It will help you.

Trismus is caused by damage to the muscles used for chewing. During surgery, trauma, or radiation therapy there is commonly secondary damage to the areas around the tumor site. As this damage heals, the body forms scar tissue at the site. As this scar tissue ages it becomes less flexible. These changes result in the limited jaw motion that is identified with trismus. Try using a Therabite to overcome the limited opening. It is a more expensive (or you might borrow one) than using the wooden tongue depressors but is more effective. You may find this previous post on trismus problems of interest. You need to do your best at stretching the muscles as much as you can. And you need to continue it through and beyond the radiotherapy.

Note: Aetna considers the Therabite Jaw Motion Rehabilitation System medically necessary to treat mandibular hypomobility in irradiated persons with head and neck cancers. So it is worth checking if your health insurance can cover the cost of the Therabite. (Aetna is a U.S.A. leading provider of health, dental, group, life, disability and long-term care benefits.)

The hairloss won't be as bad as you think. The other side won't be affected.

A well fitting obturator should help keep food from going up into the nose, thrusting your tongue up against the plate to ensure a tight seal/fit helps if it is loose.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello Maggie
You ask about hair loss. Don't panic too much - I had rads all over my face and back neck in 4 positions for unknown primary. I can recall being very resigned to hair loss. The oncology consultant was female and understood my concerns. She told me that the back of my head/ears much as you decribe were in the field of radiotherapy and hair loss was very likely.

However the reality was different. What I had was a hair loss weakening at the back and one day about 2 weeks in I brushed my hair and hair came out abundantly, but not in handfuls just about 50 hairs at time every time I combed it through. I thought this is it I'm losing my hair, but this continued for about a week at a slow rate and then the hair loss just stopped. Some people say it just falls off in about 3 or 4 goes. We'd need more comment on it. But I think consultants have to safeguard themselves you telling you it might happen.

But at no time did the back of my head go bald there. I think my hair did suffer as yours will, but it is very much a wait and see.

Apart from chemo cases, I did see one person who did lose a lot of hair, but he had brain cancer and had radiotherapy over the top of the head. even so he still had some hair. You will lose hair if you have chemo though. But not everyone has chemo if radiotherapy is considered the best treatment in your personal case. I think my hair was not in great condition for about 6 months after, then suddenly my hairdresser at a cut said your hair has recovered and is much better. To be honest you just get used to how it is when it's poor.

Good luck - just throw yourself into this and you can do it. It is unpleasnat, but in the latter stages and in the month after. I like to think I was so affected by it from day 1 that it did a good job. I'm just coming up next month to the diagnosis date 3 years ago. Without radiotherapy I have no doubt I would be dead by now.

Thanks, Pauline. Your message was very reassuring. I have very thick hair so hopefully I won't have too much of a problem. At the moment it is not planned that I should have chemotherapy.
I wondered where you live in Worcestershire. I used to teach at Pinvin, near Pershore before I moved east 3 years ago when i remarried.

HiMaggie,
My Mom had the chemo and radiation lost all of her hair but she took a ball cap and went to Sally's beauty supply and bought some bangs and a pony tail. She sewed the bangs in her ball cap and sewed the pony tail to the back of the ball cap. She looked really cute

Terry