Hi everyone,
I'm a breast cancer survivor (almost 9 yrs) and an occupational therapist (birth-21 with physical disabilities). I had bilateral mastectomies (hence the name TwinPeaks) and chemotherapy (Epirubicin/Taxotere every 3 weeks x 4). I did not need radiation. My experience with chemo was not too bad, but my surgical recovery was very painful.
I also have a very bad TMJ issue unrelated to my cancer treatments - one of the worst my TMJ specialist has ever seen (essentially bone on bone). I'm having orthodontic treatment to rebuild my bite that fell apart, and I limit my chewing and biting (ie, softer foods).
So....I guess maybe I have some experience with just a little bit of what some of you are dealing with.

Anyway.....the reason I am here is that I just found out a regularly visiting teacher at our congregation/church has been diagnosed with "tongue & throat" cancer. I don't know the specifics of his cancer or treatment. However, it sounds like he may have started radiation and/or chem this past week.

I am putting together a care package(s) for him. I'm giving some $ to help with out-of-pocket expenses and things like meal replacements. I'm also giving some of the Biotene products to help with the tx side effects.

My question is, if it's OK to post a question in this section, what else besides the Biotene products is helpful with the oral side effects of tx? Are there other products, maybe from a dental supplier, that I can get for him?

Thanks so much in advance for any suggestions you may have.
Blessings to you all as you deal with life with cancer!

Its very thoughtful of you to help them! Im sure they will greatly appreciate your kindness.

Since everyone is so different and has different experiences in their treatment for oral cancer its pretty difficult to guess what they would need. Have you considered asking them? They could have already stocked up on biotene or been given alot of 'samples' from their doctor. What about a voucher to help cover the cost of their prescription medications? As far as dental products go, most OC patients will have flouride trays and use prescription flouride gel to use daily. A water pik could be very helpful but they could already have one. Maybe this person could use some help by driving them to their treatment or doctor appointments. There are all kinds of ways to help an oral cancer patient, many small things could be appreciated. Walking their dogs or offering to help them with errands are other ideas. Its very kind of you to help your church member.

I can't think of anything to add to ChristineB's reply. I can say that your fellow church member is very lucky to have a kind, and thoughtful supporter as yourself, even while suffering from your own medical conditions. Thank you for posting.

So far I'm giving cash which is always useful and some Biotene products which, if he doesn't use now, he might need later. He's the type of person who likely won't ask for anything so that's why I'm giving "care packages" without asking first. He lives far from me but hopefully he will let me know via e-mail, text, or phone (if he can speak) if he needs anything else specific. I am willing to drive up to him when I can if needed but he may not be comfortable with that. And since I work full-time my availability may not match up with his needs anyway.
Thanks for your thoughtful response Christine and I wish you all the best!!

Thanks for your encouraging words Paul. I once helped an ex-boyfriend through a bone marrow transplant for acute mylogenous lukemia (AML). Then with my own cancer I feel like I've had quite a bit of experience.
Let's just say I like this guy and would feel blessed if he would let me help him.
I wish you all the best!!

A really good cream for his neck - the one I used is not available in the states but aquaphor is popular around here -
Usually by the end of treatment nothing tastes good and your mouth is too sore to eat much -nor drink much... So other than liquid nutrition, everything else is a crap shoot,
It's great what you are doing. Does he have a caregiver? I know working full time it would be impossible to help him but what most people need especially around the end of treatment is transportation to and from the treatments. Thanks so much for helping out.

As above - These are the things I really appreciated:

1. A child-sized toothbrush with a very mild kid's toothpaste
2. Ora-gel (or something similar for mouth/tooth pain) for the really sore spots on my tongue.
3. Dental wax - if any teeth are sharp and irritating
4. Cream-type Lip Balm - without menthol or wax
5. A supply of Boost, Ensure or the many other meal replacement drinks
6. Keep the ice trays full in the freezer if he can only drink cold or ice-diluted drinks
7. A small mortar and pestle to grind up meds that are not available in liquid form.
8. A bunch of shot-glasses (this was all I had then) or a pill organizer to keep track of meds
9. A journal to keep track of a whole bunch of stuff! (I can't even list all of them here.)
10. A heating pad - it's great if you've lost a bunch of weight and feel cold all the time.
11. Colgate Prevident Sensitive 1.1 Fluoride toothpaste. (non-prescription in Canada) Comes in a mild fruit flavour too.
12. Little applesauce, pudding, ice cream, Greek yogurt and fruit salad containers etc.
13. Yes - skin cream is wonderful Glaxal Base was great and non-prescription.
14. Many, many bottles of Club Soda. Seems to be more of a Canadian Rad doctor recommendation thing vs. the baking soda/salt/warm water recipe that other countries use. I just found it way more convenient, and so did my husband. Still addicted.

If I remember more I will let you know, as I'm just staring to remember things after a year since treatment
Ive only listed the stuff you can buy - not the physical or emotional support you can do.
I am female and had oral tongue cancer vs. throat cancer, so throat cancer peeps might have a different set of things they appreciated.

BTW - I hate soup, and now have a freezer full of soup from friends and family. Ask him how he feels about soup before you spend days making it! haha

Thanks for your reply Cheryl. He's divorced and it doesn't sound like he has a main caregiver. He drives ~60 miles one way to teach at our church and I don't think that much is knows about his private life/friends. Even if he has a friend or 2 to help I don't know if they would have the understanding/experience of what he'll need. We do have someone at church who is a hospice nurse and I think she's also offered to drive up and help out.
Someone mentioned that he might have a place to stay at the hospital while undergoing tx (?). I'm hoping to hear back from him to get more details. I've offered to go up when I can and do food shopping/blend things for him (whatever he can eat), etc, but I put that in a letter that hasn't reached him yet.
Aquaphor sounds like a good idea :-)
Thanks again!!

Great tip about the soup, Lol! I'm thinking more like Odwalla protein drinks, Boost, etc, although I'm sure too much sweet can get sickening after a while.
I'm making a list of items. I forgot about the pill organizer. A friend gave me one and it was a real help!
I definitely have extra dental wax due to my orthodontia. I can handle the tooth pain but it's that muscosa and tongue pain that's the worst with braces as an adult. And magnify that with radiation and maybe chemo and OUCH!!

Is there a brand of cream lip balm without menthol that you can recommend? I can't think of one....

Thanks for all these ideas - they are much appreciated!
Take care and best of luck!

You might want to add some game books like crossword or saduko (sp) for those long waits in the rad department and doctors office.

[quote=TwinPeaks]Is there a brand of cream lip balm without menthol that you can recommend? I can't think of one....[/quote]
He said Blistek (sp?), but the one I liked was a Blistek in an orange tube with 'natural ingredients'. It did contain menthol so it was poo-pooed by the nurse, but I still liked it - you can't use anything (cream, balm etc.) an hour or 2 prior to radiation.
[quote=Kelly211]You might want to add some game books like crossword or saduko (sp) for those long waits in the rad department and doctors office. [/quote]I was lucky - the whole rad waiting room was filled with large tables, those weird lazy-boy type chairs for people that needed them, and they had jigsaw puzzles on all of the big tables. The volunteer cancer rad/chemo drivers (wonderful men - no women for some odd reason) always complained that there were no new puzzles and they were tired of the old ones. The new set of rad patients picked the same ones over and over again.

Great distraction for me and my husband. Now that's an idea! Donate your old jigsaw puzzles to your local hospital.

Thanks for that idea Kelly...love you all

Added another one:
14. Many, many bottles of Club Soda. Seems to be more of a Canadian Rad doctor recommendation thing vs. the baking soda/salt/warm water recipe that other countries use. I just found it way more convenient, and so did my husband. Still addicted.

Books on CD might be something he will like. Reading and watching tv made Eric's nausea worse so he enjoyed the books....and music too.

Thanks for all the great suggestions everyone!!!!!

Aquaphor has a lip balm called "Lip Repair and Protect" with SPF 30. It's the best stuff I've ever used. Everyone has his/her own opinion. Hey, sometimes I've even massaged extra virgin olive oil into my lips.

You have some great suggestions here!

Best wishes and keep coming back .

Kerri

Thanks for the suggestion Kerri and I'm sorry you are having to deal with this. I hope your baby is OK!