Jean -

Don't ever hestitate to ask questions and, ask why a certain treatment is being done rather than another. Also, be proactive in presenting anything which might affect the eventual treatment decision. For example, prior to his daignosis my husband had existing (and progressing) high-end hearing loss due to ear infections as a child, also the hereditary neurological condition called "benign essential tremor." His MO and RO both took this into consideration and he was given carboplatin chemo rather than the more commonly-used cisplatin because it is far less toxic to the ears, plus no taxanes because of the risk of neuropathy and possibly exacerbating his existing tremor.

Be sure to ask about the possible (almost unavoidable) side-effects -- see the Oral Foundation web site for discussion of these -- and ask how they plan to ameliorate them. This discussion may be better with the oncology nurses, by the way. This would include trismus, mucositis, pain, skin burns, and inability to swallow sufficient hydration and nutrition. Ask about the PEG tub, I agree with other posters that it can be a life-saver.

You must be the strong one, it is hard enough for the patient to get through each day. My feeling is you can never ask enough questions and get enough information, fortunately, my husband's doctors all agreed!

Gail

p.s. since Joe is young and a non-smoker, has he been tested for human papilloma virus? It is turning out to be a major cause of tonsil and base of tongue cancers in non-smokers, is biologically different, responds better to treatment and far less chance of recurrence. However it is almost never implicated in oral tongue (outer part of tongue) cancers but your post doesn't make clear where Joe's tumor was.

Gail, I don't know if was tested for HPV, but I plan to ask him. His tumor is on the underpart of his tongue towards the back.

I have been reading about the side effects and they certainly sound awful. For all of you who have gone through this and those who have supported patients, you are simply terrific.

I didn't realize that the peg tube was that easy to insert. That might make a difference with Joe's decision. Thanks for the information!

Jean

Jean,
How wonderful that you and your brother were able to talk and get on the same page.
He needs his family now and you will be a wonderful advocate and friend.

*Rooting for Joe*
Maggie

Hi Jean,
I used to print out a lot of the posts here to share with my mom and family, it was insightful and made it easier for them to start asking questions.

Jean - As Donna says, it does help to print out info from other posters or from searching the OCF web site - that way when you share it with others, it's not like you are telling them what to do but it's info coming from others who have been thru the same experience. It's better of course if questions can be asked in a positive manner. I found that having other people present when asking questions of the doctor really makes it easier to remember and you can check with each other afterwards to make sure info was clear. You can ask Joe if he wants you to be there. . . . that way, it will help him to feel in control. When my son was not keeping track of his medications and resisted my suggestions, I printed out some really good posts and just left them by his bed and it really got results! Sounds like Joe is really lucky to have such a caring sister.

Excellent ideas!

Radiation starts next Monday. We are all nervous, but I am just amazed at how my brother has handled this.

It seems as if the first 2-3 weeks might be relatively easy compared to the later weeks. He will be done on Dec 21, so I hope the New Year will bring the best for him and everyone else on this board. One of the hard things for him to do was to give up playing Santa Claus at our family party on Christmas Eve. Some of the kids still believe and he's been doing it for 10+ years.

Another question is now vexing me ... we have planned a schedule for people to take him to radiation and to stay overnight with him. What about during the day? Should we be telling people to plan to stay after radiation? I fully realize that the final decision will be Joe's, but if this might be a day-long commitment, I want to make sure that people know what they are getting into.

Thanks,
Jean

Jean,
You are amazing! Sounds like you have got everything SO organised! Well done! I'm sure it will help all of you by spreading the burden.

Have you got the schedule written down/spreadsheeted?(OK, I just made that word up!)

From what I've read, not experience, in the early stages he will want and possibly need to be left on his own afterwards, as the side-effects 'kick in' he will/may be more needy of company/nursing--but you seem to be well-prepared for that, and as you say, it will be his own decision, based on how HE feels, initially physically/emotionally, later you may need to 'pull rank'

Hey. let's hope for the best--no-one ever said Santa couldn't be sleepy or considerate occasionally--he might manage a half-hour appearance, but has decided he won't stay too long as he knows 'Uncle Joe' is asleep in bed and doesn't feel too good!--Long live believers!!

I'm sure the 'pro-caregivers' will soon be on to advise! Well done again, you!

Brenda

Jean,
Just a thought on the questioning subject:
There were some questions that I didn't really want to ask in front of my husband - or that I didn't have time to ask (or think to ask) at the time of the appointments. So I would email his radiation oncologist - we had a really valuable continual correspondence. I realize many doctors would not be open to this, especially at a large center.

Best,
Anita

Jean,
I e-mail my mom's RO periodically. He read the e-mail tonight and called right after to discuss it and speak with mom. I value the opportunity to be able to discuss questions that I am uncomfortable asking in front of mom/family. Sometimes my mom just wasn't ready to hear everything. Also, I agree with Bren about your brother needing time alone initially. My mom always came home exhausted and really needed to sleep/rest. I found that if someone aside from those living here was present she would try to stay awake and be the hostess. Rad really took a lot out of her.
I'm glad he has you to manage things....it's not easy at times.