Beginning Treatment...Anyone With Pointers?

My husband was diagnosed with stage 4 scc of the right tonsil May 7th, and he begins his 7 weeks of radiation and 2 weeks of chemo on Monday. We have already gotten in touch with a dentist and had all things checked out, as well as some flouride trays ordered. He has a peg, and several cases of ensure for use when necessary. I would appreciate any and all advice that anyone has for him (and myself) to get through the next few weeks. I need to do some gathering of supplies this weekend, and would love everyone's input. What will he need to get through this as comfortably as possible?? I would love to be at least semi prepared.

Oh...one thing mentioned is gum or candy to suck on to help with the dry mouth...anyone have any kinds that are good? dentist said no fruity/acidy ones, and be sure all sugar free.

Winicki,

           Soft foods will be the meals for him once he starts all this. He may be able to eat normal for the 1st week or two, then the sores will begin. Soft boiled eggs, soups, oat meal, you know, anything moist and soft. Nothing acidy, or minty as you mentioned. I also ate almost everything at room temps.  I had the PEG tube, so I leaned on it often until I was done with the Radiation Treatments. I used the gravity feed method.

           I also made a mixture of 1 tablespoon of baking soda and 1 tablespoon of salt in a 1 quart bottle of water and gargled often with this at room temp also. It helped a great deal for me. I didn't chew gum as there were allot of sores in my mouth. The solution helped numb them when I drank plain water, etc. I have read that some people used lemon drops or lemon candy. I wasn't told this during my treatment, I may still try it as I only have saliva when I chew gum now.

           Lotion for his neck, unscented, often daily. I was told 3 times a day, I did it as soon as my neck felt tight or dry. No cracking or blisters for me.

           Plenty of fluids and nutrition during this time. Try to have him keep his weight up, it is very important. If nothing else,  keep swallowing something each day, even if it is just water.

            Ask as many questions as you need here, there are alot of knowledgable people here from the posts that I have seen. Each has their own little way that they had for getting through all this.

             My Best to Everyone 

 

hi Winiki<

I have been out of treatment for 3 wks today and first day that I feel a little better so here I go with all I did to get through 8 wks of rad and three sesions of cysplatian(nasty stuff )

1 i drank slippery elm tea and (good) raw honey everyday for my throat would open 4 capcells and add hot water and 4 large spoons of honey every morning before rad tr> I feel this really healed and protected my throat

2. RADX radiation cream for the neck burns I got it on line and work very well

3. stool softener (one every night till i got the diet level) and benefiber 

4 Juven- helps keep muscle mass through out treatment I mixed with benefiber 3x/ day and put down the peg  also would add Green drink (essential Greens) and put down the peg as well

5 Maxi strenght Neosporin for around the PEG keep it clean and covered with gause (I did not and paid the price the skin got very raw and started to bleed and has been very sore for weeks)

6 Co-Q-10 vitamin 100mg 3x/day with each meal (helps with mouth sores as well as the JUVEN)  I only had one and almost gone today

7 Triamcinolone Acetonide  dental paste for mouth sores from dentist  have it earl and use often really helps with the pain from those things and not as many drugs needed Rx

Nystatin & Triamcinolone Acetonide ointement for the corners of the mouth from dry mouth prevents fungus    SAA Rx

Chlorhexidine - oral rinse to help prevent plauge on teeth SAA  Rx

8 Need a new tooth brush every week soft run under hot water to help

9 Vince  Gum and Mouth care 

10 Plackers dental flossers - Placker.com

11 colgate Pervident 5000 floride tooth paste Rx 

the mouth deal was: rinse with Vince, floss with vince dipping flosser in to cup and hitting teeth, oral rince, then Pervident at every meal.

12 I used JEVITY 1.2 for my meals in my PEG the hospital turned me on to it so much less sugar than the Boost or Ensure got it on line from Allegro Medical.com  very good company I thought

13 Aloe juice for the neck used topically along with lotion

14 Mylanta it really seemed to help with the vomiting I would take a sip before any meal and helped calm the stomach down as well as Pepsid AC maximum strength 

 

Hope this helps and good luck any questions I will be here for you because so many people where here for me

O I almost forgot get your pain meds EARLY  and STAY ahead of the pain

I had percost helped a great deal there are NO heros in this all we have to do is get acroos the finish line, have not heard of a sprint yet, But FALL CRAWL OR BE DRAGGED JUST GET OVER!!!

I crawlwd

john 

WOW, John-were you prepared or what?!!!!!!!!!! What a great job of covering all bases. Excellent advice. Gayle

My husband is currently a little over 2 weeks out of his last erbitux infusion and about a week and a half out of 6 weeks of radiation and the things we found useful are:

-The Salt and Baking Soda rinse helped tremendously with the dry mouth and sores

-Oasis spray to help with dry mouth in the beginning but after about a week he couldnt use it because it burned his mouth

-Humidifier helped keep his lips from sticking together real bad at night, also with all the junk in his throat

-Aquaphor Healing ointment for dry skin

-Mylanta for heartburn/nausea; my hubby started feeling nauseated from drinking water and they told him a shot of mylanta down the tube would help

-Plenty of eggs, soups to eat in the beginning and mine still goes through bags of popsicles (helps with his dry/sore mouth)

Phillip didn't really get too much out of the hard candy.  His mouth was so dry that it basically just stick in his mouth, it didnt really help with the saliva at all.  Those are pretty much our staples along with his liquid hydrocodone and endless supply of boost and ensure.  Don't be afraid to ask questions or read the posts that are already here.  I sat here for hours one day reading most of the messages and I would't have been even half as prepared for what we would go through without this place and the people that are so helpful.

Take care and good luck! *hugs*

Brandi

John pretty much covered all of the bases...one thing though about the toothbrush...go to a drug store and get one made for a baby. They have "Baby's First Toothbrush" that works great. It's small so the plastic doesn't bump around in your mouth which can be pretty painful when you get "chemo mouth" and they have the softest bristles you can find.

Good Luck

Joe 

thank everyone so much for their advice. Got my list all ready for the drug store in the morning. This site is such a blessing!