Okay... you've gotten some good advice here to pass along - acidic foods can burn but at this point I'd be willing to bet anything burns. I used to take a pain med (this was the last week and the first week after treatment finished) wait 15-30 minutes for it to kick in, and then rinse with magic mouthwash and swallow (some you can swallow some you can't he needs to know this when he gets it from the pharmacist) magic mouthwash numbs for a short period. SO I would have my mouthwash and chug an ensure. I did this with the high protein high calorie ensure 4-5 times a day. He needs more calories so he would have to have more. It would still burn like acid but I could get it down (13 gulps!!! one breath midway!!!) Then he should clean his teeth, rinse with a water pik (luke warm water or salt water) and then SLEEP IT OFF.

hugs..& wish him the best - he's at the hardest part, but in the home stretch.

PS - the waterpik really helps with the mucositis, and thick mucous.

I would love to thank every single one of you individually but I just am swamped today with work and my brother. So I thought I would respond to all of you.. Thank you all so much for the wonderful advice. Your advice has made me
So happy and during the most difficult time of our lives i thank god that I met
All of you wonderful people.

My beother went to the ER yesterday morning because he couldn't tolerate the pain anymore. They wanted to release him but my mom (one tough lady) demanded that he stays there overnight as the dilauid pain medication helped him a lot. He hasn't slept in days as he would wake up every 10 mins from
The phelm in his mouth. We were sent a suction machine that he was using. He finally got some sleep yesterday. The radiation dovtor had him skip his radiation yesterday and today.

This morning he got his peg tube In.
He has done 2 big bags of cisplatin but he is set on skipping the third. I know many people have skipped the 3rd. Should I worry if he skips the third?

You can do as much as you can do. Cancer treatment is basically bombard your body with as much toxins and radiation just short of killing the patient. Each person has a unique threshold so you can't worry about how much in absolute terms, just that he is receiving the maximum treatment while balance off the short and long term side effects. Take comfort he is receiving great care and not try to second guess doctors. Good luck.

I skipped the 3rd dose. It was not a light decision, but my tinnitus was driving me nuts. Its not uncommon for there to be some complication to warrant skipping the 3rd dose, and I was told the difference the 3rd dose makes is not critical. I wasn't shedding any tears I missed it, I was horribly sick with the first two.

Ditto to donfoo. The third dose decision should really be a medical one, by an oncologist familiar with all the details of his case.

Skipping the third dose is pretty common.

Ask the doctors about getting a prescription for extra hydration several times a week in the chemo lab. This will help him so much! He will instantly feel better after a bag or 2 of saline.

Kris was not able to have the 3rd dose of Cisplatin. His White cell count was too low. We were told studies show no difference in outcome between those who got either 2 or 3 bags of Cisplatin. But that there was a survival difference if the patient only had 1.
I know that Kris hated that chemo and he has told me he will never have chemo again, ever.
Tammy

Hi folks, just throwing this out there. We started week 3 of Cisplatin- 1 x per week for 7 weeks and daily Rads for 7 weeks. The lymph node has decreased substantially and the BOT which made it almost impossible to swallow 3 weeks ago, has shrunk enough that the can swallow and talk so well that you would never know he has this tumor. Has anyone experienced or heard of stopping the prescribed treatment early? I have asked the docs and we cannot do that, but I was just curious if anyone has.

Thanks so much

I have never heard of a planned series of radiation or concurrent chemo-radiation treatment stopped early voluntarily. Often a few treatments may be missed or treatment may be stopped early if the patient can no longer tolerate the side effects.

Chemo is combined with radiation to boost the effectiveness of the radiation. Chemo does not kill cancer so it is not a curative treatment. Chemo is not always done concurrent with radiation so it might be possible to stop chemo and continue radiation. Keeping chemo going and stopping radiation would only make sense if the goal changes from curative to palliative and allowing the chemo to stop or reduce the cancer but not kill it.

Given you are just a few steps out of the starting blocks, plan on going the distance and taking each day as it comes. Most generally get a couple weeks of a free ride before the side effects turn up. Stay close here and keep reading and posting for advice as the road gets bumpy. Good luck.

Stopping is a very bad idea. It would mean that for the most part everything he has gone through to this point has been a waste. This cancer can be HIGHLY aggressive. Though it has a good response as HPV related SCC, doesn't mean that he is cured. Out of sight doesn't always mean gone. All it takes is one cancer cell to survive for him to face a full blown recurrence - and to be honest even though HPV BOT cancer is said to be more easily treated and cured than non HPV related scc, there are many people here who have had recurrences and many who have died - this is even after a full round of treatment etc... so no - no one that i know of has stopped treatment unless it was with the intent of letting nature take its course - which is a horrible way to go, or they've been told that they are terminal.

its hard... kinda like 5 weeks of continuous labor and then some - but it is doable.

hugs and strength to you.

Just to add in stopping treatment unplanned like this may even speed up cancers proliferation due to regenerization of cancer cells. Also, I had to stop my induction chemo in 2009, medically, no other choice, as I was hospitalized long term from the toxicities after 5 days. As such, no other cancet treatment, chemo or radiation was given indefinitely, although I was clinically clear just from 5 days, I eventually had a pathogical recurrence 8 months later, and numerous times thereafter.