I was just reading posts from Lyn, who is dreading radiation to the point that she hesitated to even begin. (Sorry Lyn - I hope this doesn't embarrass you!) I thought back to before Ariel began and how scared we were. I scanned this forum and the web for any little bit of info and advice that might help make treatment easier or more comfortable for him. This is his last week of treatment and he has had so few side effects - in part, I believe, because of some of the things we did proactively. I thought that it would be great to have a continuing thread where everyone could post their hard-earned wisdom - a thread where a newly diagnosed person could come for advice. Here we could post those things that worked for you, or didn't, and offer some solid suggestions for dealing with the issues that occur during treatment. We all know that each person is different and your mileage may vary, but if a suggestion makes just one person more comfortable then it will have been worthwhile.

Here are the things that Ariel and I did - again, YMMV, but these things helped ( or at least made us think that we were doing something to help ourselves!)

1) From the very beginning Ariel took zinc, tumeric, acidophilus and a good multi-vitamin. Yes, I know the zinc and tumeric aren't proven, but they were cheap and harmless, so why not try? He has had no mouth sores, no sore throat and no thrush - nothing. His skin just looks tanned, and this is a man who has to sit under an umbrella at the beach, his skin is so sensitive.

2) Switched over to acidophilus milk and cheese - again in an effort to fight thrush.

3) We asked the doc for a prescription for Miracle Mouthwash on day one of treatment, and he started the swish and swallow routine then - didn't wait until the pain began.

4) We bought a humidifier and use it by the bed; it really seems to help. He also started using the Breathe Right strips at night to help him breathe through his nose and not his mouth.

5) Ginger ale helped to cut through morning mucous.

6) Biotene toothpaste is very gentle - helps to avoid any irritation caused by regular toothpaste. Using a soft child's toothbrush helps, too.

7) Lots of time in prayer!


Please, please post your tips, too - maybe folks like Lyn won't feel so scared if they have someplace to turn for solid advice!

Take some favorite music in with you to the treatment. My Rad Techs were more than happy to oblige me even when I would bring in some really off-the-wall stuff. Much better than listening to the buzz of the machine and it helps to get your mind someplace else.

Lots of moisturizing lotion (I used Eucerine ) to keep your skin intact.

I also used Silvadene cream on my face and neck when the burn started getting really bad.

BTW.... I think this is a GREAT idea Karen!!

I'd check with the doctor before taking vitamins and supplements when you have cancer. I was told to take none until after treatment when they put me on zinc, vit c and a multi vitiamin. Maybe protocol has changed in the last ten years, but I would check first.

Take care,
Eileen

Water, water and more water!

I also kept a 'log' of my daily food intake to be sure I could keep my weight up--am very thin to start with, and had lost 7lbs before treatment because of jaw tumour restricting mouth opening.

I wrote 'round robin' emails to friends to keep them up to date and keep the phone 'at bay'--an ansaphone is also a good idea--caregivers can then update people as and when they wish, yet people know they can leave a message even on 'bad' days.

The hospital gave me a 'visual imaging/muscle relaxation' CD which I MP3'd and used whilst travelling to and from treatments.

Large boxes Kleenex ultra-balm man-size tissues for both patient and caregivers--use liberally when necessary and you don't risk a sore nose on top of everything else!

Brenda

I agree about checking first before taking any type of supplement - I should have issued a disclaimer - but rest assured that we did check with the RO before taking anything. He let us know to avoid antioxidants, but the zinc, tumeric and multi he approved. We also ran it by the nutritionist and got her approval. Not all doctors agree (on anything!), so please check with your treatment team before taking any supplements.

This was just something that we felt helped.

Karen

I also was told NO supplements, and followed that rule. I got through treatments fairly well. Well enough to rock climb the day before my last rad and chemo, and to go out to dinner the final day of treatment.
I only lost 4lbs during treatment, going from 119 to 115. My caregiver was adamant about calories and fluids. I had to acheive 1,500 cal. and 68oz. of fluid everyday, and I did that. I had to eat something at each mealtime, and supplement with liquid nutrition, which I drank instead of putting it in my feeding tube.Yuck.
I used frequent guided imagery and prayer.
I had acupuncture every week, and a few reiki and massage sessions.
Thought of my treatments as an afterthought of things to be done for the day, just pretended it was another errand. Left for treatments at 6:45 each morning and came back in around 6:30 PM.
I sang everyday(at my caregivers request), wondering if this had some beneficial effect on
my throat.
Did jaw exercises religiously, starting 4 weeks before treatment.
Applied Aquaphor as often as I could. Result; a very tanned, but not burnt, neck; that peeled and looked normal a week post TX.
I am not sure why, and my doctors do not understand why, but I did not get any mouth sores from the chemo, and I never reqired narcotic pain relievers(I used Advil) for radiation-induced sore throat. I continued to be able to swallow food throughout treatment.
My biggest problem was a case of thrush towards the end of treatment. In retrospect--I would have carried soda water with me during the day to keep that at bay.
I used biotene products and flouride treatment. My dentist can't believe I went through radiation, as she said my mouth is super healthy.
For some reason that I cannot explain, I was never afraid going in for chemo or radiation. Perhaps this had some effect on my body.
One month after treatment my doctor looked in my throat and said, "You look like you never got treated!"
My taste started coming back 2 weeks post TX, dry mouth not bad at all.
I was able to complete a strenuous 7 hour mountain hike 6 weeks post TX.
I hope this can give anyone who is starting out a little hope and a little less anxiety. Keep those positive thoughts flowing!!!

hell fire girlcat--I'm feeling tired just READING your post--LOL!

Brenda

Sorry, Brenda! LOL It was a bit wordy.

Girlcat,
I am not sure that the canned soda water (I am assuming that you are referring to selzter water and not soda with sugar in it) would have made a difference with the thrush. Soda with sugar will exacerbate thrush.

Thrush is caused through several means. First, a pH imbalance in the mouth and secondly a compromised immune system. We all have candidiasis in our mouths but the pH and immune system keep it in check.

Even with normal salivary function and a resaonably healthy immune system I developed thrush several months ago (and I am 5 years post Tx). During Tx I took a maintenance dose of Diflucan daily.

You must be a remakably tough person to take on those activities so close to the end of your treatment. I would recommend slowing it down a little though until your WBC levels start to return to normal.