Buzz has had #18 of 33 IMRT on right jaw Friday. It appears that the LEFT jaw is just as burned as the targeted right; he is having much pain there. He states that a 'block' is inserted in his mouth during tx. I thought this would prevent radiation from 'passing through' to left jaw. THANK YOU for your input!

Lois,

Of course we have a different tumor to deal with but Bill's "burns" are/were bilateral especially in the first set of treatments. His redness and now peeling and dark skin go all the way around his neck and up his throat like he sat in the sun with a boat neck shirt on. You probably need to ask the RO, but I assumed they are hitting everything that could have a recurrance with the IMRT part saving parotids and other vital structures. Bills' last 10 treatments have been "boosts" where they "cone" down to the tumor area. Oddly enough, his pain is way less...we are completely off pain meds now.
Go figure.
Your best bet is to pin the doc...good luck..they don't think we women are capable of understanding technical stuff...so just hit them with questions the normal population wouldn't ask (we are empowered by the information we receive from this board and our internet searches.) It takes them aback but they finally start answering questions.

I am a little aggravated with our RO...haven't seen him since Bill's hospitalization. You better bet that if we aren't guided to a consult after his last treatment tomorrow, I will throw one of my hissies....sometimes you have to be a squeaky wheel and I know that you can do that very well Lois! Deb

Lois Robin was burnt from his bottom eyelids down to the second rib down from his neck.He was also burnt on his back,in fact the burns coincided with the shape of his mask and he had a white completely unburnt area around his mouth where they cut out a breathing holel.

I dont think it is anything to worry about,but get the emollient cream out and soak it well.It helps with the discomfort and dryness and can stop peeling.

good luck honey

liz

Thanks Deb & Liz....the 'radiocare' cream has been helpful...there is only so much one can do, I suppose. Buzz has actually taken a couple of Percocet these past two days, the pain has been so great. I told him to 'stop being a martyr!' and take the damned medications provided for him. He is the ultimate 'macho man', and has always prided himself on his strength and endurance. I try not to cry when I see the agony he is enduring...

Following radiation today, Buzz has lost his voice and can only 'whisper'..haven't taken time to look this up, but can only assume that it is one of the side effects of the IMRT...

Buzz is still doing his best to eat, and I'm doing my best to feed him just as long as he can swallow. Very thin grits, creamed potatoes, poached eggs...and I'm adding 1/2 & 1/2 and real butter to everything I prepare. (I've only gained about 10 lbs. in the past 3 weeks!) I refuse to eat anything different than he eats!

Deb, how did it go for y'all today? Liz, God bless you, I sincerely appreciate the time and energy that you contribute to the forum. Your experiences are invaluable to all of us. What a great service you are doing! Robin would be so very proud of you and your efforts!

Lois

Lois firstly thank you for your kind words and secondly yes the whispering voice is par for the course also.
Rob lost his voice almost completely about week 4 and he never really got it back again.Be prepared for anger and frustration at this stage Lois as he will get very frustrated when you cant hear or understand what he wants to say,and the effort and pain it will cause to keep on repeating himself will make him a bit snippy.Also you may need to start being his voice on occasions with doctors and things where you know what he is trying to say and cant.

The hardest for me was when people rung up and he wouldn't or couldn't speak to them.It got so he wouldnt answer the phone even if he was sitting right next to it and i was the other end of the flat.
Official calls were a nightmare as they wouldn't speak to me without his premission and he had to croak down the phone that it was ok for me to speak on his behalf.
Get him a pad amd pencil and let him write things down,it will help him and hopefully head off any confrontation.

love liz

Lois when i put emulsifying ointment on Rob i just ladelled it on and left it so his face was white and looked like he had a face mask on.It would absorb into his skin in about ten minutes but kept it very moist.The skin can and will break open into sores if it gets too dry.

Hi Lois,

Its something everyday right?? Just be prepared to be crazed with trying to take care of all the collateral damage this disease and treatment throws at you!

Yep, Bill lost his voice a few days here and there but oddly enough he has it back since a couple of days after his hospitalization. I think he had a mouth/throat infection going on that got zapped by the IV antibiotics and that is why he is so much better. He has so much less gunk in his mouth and throat...he is swallowing liquids..almost 40 oz today and his speech is so much clearer...just a miracle. His burns have turned brown and are peeling so he has areas on his jaw and throat that look like baby skin. Aloe jel worked very well for Bill on those burns and was so much less sticky and greasy.

WE ARE DONE as of yesterday afternoon! Gave the staff a bag of Kisses and walked out the door. I could cry at the friends that we left sitting there...more treatments ahead...one woman with lung cancer (young) not doing so well...her husband so sad. What a God awful disease this is!

So, your tough Buzz is facing a tough enemy but he will get through this and so will you Lois. You are on the downhill side...just keep plugging.

Sending love and strength you way, Deb

I have never heard of a "block" placed in the mouth. Sometimes people get devices to protect their tongue a little from side scatter.

More likely he is getting bilateral radiation (both sides) as a prophylactic measure.

Cisplatin will also cause mouth sores in general.

My husbands radiation was to the right tonsil but he had a couple of small patches of hair loss on the left side.
There must be several creams because the first one was not as effective for him as the second one we used.
Maggie