New Guy Introduction

SIDE EFFECTS
Dale, welcome to the group.

I am 8 weeks post from Tonsill (R) w/ Mets to the nodes in neck. (Very agressive)

I opted for Surgery, 30 Rad doses and 3 Cisplatins. Man did this regimen kick my $#ss.
As most have posted here, just about everyone reacts differently to treatment. I have had mouth sores, thrush, staph infection around G tube site, nausea, vomiting ETC. The biggest thing I am fighting now is severe fatigue and I am always cold, and seem to sweat profusely from the top of my head, although I never spike a temp. I initially figured since I was in great physical shape, I was a regular powerlifter, played some ice hockey and even some lacrosse with my boys that I would coast through all of this. I started at 240 lbs. and currently weight in at 180 +/- lbs.

Plan for the worst case, and just fight the good fight oone day at a time. You will come out the other side just fine.

BEST

Mike

Welcome Dale
Like everyone else has said, I hate to welcome you to this club but you have come to the right place for information and advise.

If you have read many of the posts you have probably read a hundred times that everyone responds differently to treatment and their side effects vary. We can all tell you what happened to us but we can not predict what your side effects will be. Hopefully you will be one of the lucky ones with minimal side effects.

I can't advise you on the Caphosol as I did not need it as I never had any problem with mouth sores or thrush. I used the baking soda, salt and water solution throughout my entire treatment and still use it daily with no problems. My suggestion would be not to buy it until you find out you need it. It's just my opinion but that's a lot of money if you end up not needing it.

I received Cisplatin two days per week in a three week cycle and daily radiation for 35 treatments. The Cisplatin is hard on your body but definitely worth it, I was fighting two different cancers at the same time and am now 15 months post treatment and still in remission.

My doctors advised me to try to go for a short walk each day not only for the exercise but for the fresh air and sunshine. Unfortunately I was so fatigued that this was not possible.

Hope all goes well for you.
Glenna

Caphosol
My insurance would only cover part of the Caphosol, but the maker of it had a card that would take up to $50 off per month. It worked wonders for me. I could increase the amount when I had more sores and it felt like they healed up faster than I expected. I would even wake up in the middle of the night and use it, then go back to bed. when I used it correctly it worked great...when I felt like I was doing better and trying to save money so I wouldn't have to buy more...well more sores would form. If you do get it, use the amount you need...you don't have to wait for your doctor to up the amount to up to 10 x/ day...I thought I had to wait and I developed sores that I feel wouldn't have been there if I had upped the amount.

I was advised by my doctors to do as much as I felt I could each day but to plan on needing naps to help heal. I would get up, get my kids ready for school, go to the doctor for my rad treatment, then come home and nap until they got home from school. they would play with me for an hour, then I would go back to bed until dinner time. then I would stay awake another three hours until I had them in bed. some days were rougher than others, where I would sleep all day and night (except for the dr appointments), but on the weekends I would have about half a day on sunday where I would feel almost normal.

I was also told to exercise as much as possible before treatments in order to help me heal faster (gets more blood flowing). It has seemed to work. I am 3 weeks post radiation (on my hard and soft palate, sinuses, and they couldn't block out a section of my tongue), at 75% normal activity level, 50% normal food consumption, and almost no pain (most days).

mentally...well it depends on how you look at it. I didn't get very depressed...i just told myself I couldn't afford to have my kids see me that way. I wanted to set a great example for them, so I wrote in personal journals how I was feeling. everyone is different, but I wish you the best

sorry you had to join this group, but I am happy that you have found us. best of luck with your treatments