Thursday will be two weeks since my final RT (35 in all). I hope my experience so far can give some hope to the board lurkers and to those who are just beginning treatment and those who care for them. Not everyone has the problems and complications that some of our fellow message board members are undergoing.

Because my cancer was caught early (stage 2), was confined to a tonsil area, and had no node involvement, I was spared neck dissection, surgery and chemo. I am very fortunate that the radiation I had was IMRT, therapy that is relatively new but not yet covered by your NHS. Dr. Joshi has been pushing for it (see the first thread in the Medications, Treatment and Procedures forum). The treatment is quite expensive and the programming is intensive (begun by physicists and oncoradiologists! Who knew?) and takes about 2 weeks to program before treatment can begin. Fortunately, my insurance covered everything.

One of the advantages of IMRT is that it very specifically targets only the tumor or affected area with very little going to the surrounding areas; my salivary glands were not affected at all and I had very few mouth sores. Right now they're all gone and my only side effects are a mild sore throat and the ability to sleep 14 hours per day. I fatigue easily and run only 2 or so errands per day and then come home to rest before napping!

I had dry mouth about a week ago but it turned out to be from sleeping with my mouth open (allergy season and I'm congested) but fixed that with over-the-counter Breathe Right strips. I also have thrush which is being controlled by a mouthwash that stings somewhat that I hope kicks in quickly. My doc has me using Caphosol, a swish and gargle medication, four times per day along with the salt/baking soda/water combo. My insurance company doesn't pay for Caphosol (used to prevent muscositis and dry mouth) because it is experimental, but it worked beautifully and I had a mucous buildup only when I had the allergy problem.

It's kind of interesting - my insurance company doesn't pay for it, but my doc has the pharmaceutical company rep provide me with free samples, including enough for the six weeks between my last treatment and my next appointment with him.

My doc doesn't believe in feeding tubes unless absolutely necessary and I'm able to eat soft bland foods without problems. Pete228 went through similar treatment and didn't have a feeding tube either. He ate a very inexpensive TV dinner daily (meat, mashed potatoes, veg) that I began eating too and have had no problems with it. I cut the meat into very tiny pieces and spoon the gravy over them. The dinners are incredibly cheap - about 90 cents each (.46 GBP). I also have instant oatmeal, mac and cheese, cottage cheese, soups of all kinds, rice, tuna noodle casserole, fettuccini alfredo, meatloaf, yogurt, Jello, etc. Ice cream and milk shakes are too cold. Every so often something looks harmless and I discover that what seemed bland before actually includes spices that bother my throat. My goal is Mexican food and a Margarita! I don't drink very often but I have a craving for Margaritas (and a Mexican beach too, but that's another story).

So, I'm doing great, far better than anticipated. Early on I told my doc that I'd read that rads were termed 'brutal,' and wondered if he agreed. He thought for a long instant and replied, "Yes." Well, it wasn't brutal, it was totally doable. The last time I saw him I balled him out about it and said he caused me unnecessary worry and he laughed and said I should be happy he was wrong. He thought my prognosis looked excellent but of course we won't know that until I have all the scans.

One thing I'd like to say to the lurkers: if you've got something in your mouth that is bothersome and you even have the fleeting thought, "Hmmm. It couldn't be cancer, could it?" Get thee to a doctor or dentist! Immediately! Go even if you don't have the money and figure it out later. It was only by being persistent that I finally got a doc to say, "We should look into this," on my third visit. I don't have dental insurance but went to a dentist for a further check. It cost $31 (15.80 GBP) which is pretty damn cheap when you consider that putting it off could mean cancer complications. If you waste your money on something that's benign, you've won anyway. Oh yeah, one last thing- quit smoking! It took me a bout with breast cancer to get rid of that habit.

It's been a long ride and I'm so pleased with the results! Thanks to everyone for your concern and answers or reactions to my questions and observations. There are a few of you that I feel especially close to and I think of you often.

Mimi

This message has been edited. Last edited by: Mimi McC,

HI MIMI

I am so glad that you are doing so good I want you to know and others to know that you have helped me out alot with your advice and your support thank you!!!

and yes if you have something in your mouth that is bothersome go get it checked!! push the issue for answers!even if you have never smoked it can still happen I am not a smoker and here I am fighting this cancer!

wishing you the best Mimi
take care
mbt
REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL

Well hello there Mimi ! have been looking for your posts.Delighted that ou are through and treatment finished well done !!.Also pleased you have had a reasonable time without too many nasties .Wishing you a speedy full recovery now and soon the fatigue will lift and you will be back to your old self .

Will print off your post here for Paul as this is what the doctors have decided to do instead of surgery and brachytherapy .He did say to Paul the IMRT would not be as bad as the original RT he had so this will give him a further boost .

We wish you well Mimi and hope you still post with updates as your sense of humour and anecdotes were "Awfy Good ",lol
On an even more positive note ,does this now mean your car pool with "Racing Bob" with the parking problem will now be terminated?.!!

Best wihes to you Mimi,look after yourself .
Bell and Paul x

Dear Mimi,

I have no words to add to all that you have mentioned as everything is so true and if one follows what you said - there would be far less "casualties" as there are now. I think its one of the few times, I have read something that has hit home and extremely vividly.

Take care and lots of love,
Ananth

Mimi,

So great to hear that you made it through the RT in good shape and spirits as well.

Yes, the doc's prepare us for the worst and one has to be thankful not to endure what the worst is. The not so complicated is bad enough.

On my last visit with the ENT specialist he saw a blue spot which he described as a dilated vein. I told him that I had choked pretty bad on some food the previous week with a lot of hard coughing. He indicated that could be the source, but wanted to see me in 30 days rather than 60. So now I have appointments with my radiation doc & ENT doc on the same afternoon.

Several weeks after I finished my RT my voice was almost normal. Now is back to hoarse, squeaky and losing it sometimes. Doc says RT still causing this + I had a nasty cold which was more like a mild version of the flu.

So other than this minor setback, things are going well.

Glad you're getting on well Mimi. My RT went fine aswell, nowhere near as bad as I expected. Just goes to show there's always hope. Hagg.

Mimi said: Caphosol

quote:

CAPHOSOL, a topical oral agent, is a U.S. patented, prescription medical device that lubricates the mucosa and helps maintain the integrity of the oral cavity through its mineralizing potential. The distinguishing feature of CAPHOSOL is its high concentrations of calcium and phosphate ions, which are hypothesized to exert their beneficial effects by diffusing into intracellular spaces in the epithelium and permeating the mucosal lesion in mucositis. Calcium ions play a crucial role in several aspects of the inflammatory process, the blood clotting cascade, and tissue repair and phosphate ions may be a valuable supplemental source of phosphates for damaged mucosal surfaces.

Fantastic Mimi!
I guess all in all it's not been as horendous as you anticipated!

RE the thrush - i have a probiotic drink every day and if i run out my thrush returns within about 2days. So that works for me!

Hi Mimi
So pleased to read of your treatment being so much more tolerable than you had expected at the start. Great news.
Hope you are soon clear of all/any side effects and that you will be able to speak of this episode in the past tense along with your breast cancer.
Cheers
Deborah