OK - Erbitux starts tomorrow rads on Monday. I think I have my "house in order" but want to run my supply list past you all to see if I'm missing anything:

Humidifier
Vicks Vapo Rub - seems like a good idea on one hand to cut the mucous but wonder if the vapors would be irritating to my soon to be tender tissues
Protein shakes and varied soft, moist food options
Papaya Nectar - heard there's an enzyme in it that thins secretions -anyone ever try?
Artificial Saliva
Fluoride paste/gels
Extra soft tooth brush
Podcasts and Chemo playlists
Books
Movies
The pain meds will, of course, come as needed - can anyone recommend something else that I should have on hand?
I live alone and have a great support system but want to be as prepared as I can be.
Thanks - Jen

Jen

Since Erbitux works by blocking the Epidermal Growth factor receptors, it also reduces the ability of your irradiated face and neck skin to regrow. You should stock up on some Aquifer or Burt's Bee balm and monitor it aggressively. I ended up having to get prescription creams and using Vigilon skin dressings but my MO said my reaction was the worst he has ever seen. Best bet is to talk this over with your doctors now and get them thinking about alleviating it
Other posters here have sailed thru Erbitux so it's just something to look out for and stay on top of. Of course you have to have all the cream or whatever off your skin for the radiation TX. Sounds like you've earned a merit badge in preparation.
Charm

Do you have a tray for the fluoride? Use it every night if you can. I am almost 5 years post Tx and I still use mine.

Saliva products won't be used till the end of Tx. If you are like the majority of us you won't start to feel the bad effects from the rad until around your 4th week and it can last until around the 3rd week post Tx. Some are worse and some hardly have any problems.

Watch out for Erbitux's bad skin reactions.

Doing this alone, I mean without someone there living with you, will be tough so make sure someone in your support group is available 24/7 until at least from the 4th week thru the 3rd week post Tx. Of course we are going to be with you 24/7 so use this site as often as you wish.

As you start to loose your taste you may crave something but don't go out and buy more than one until you taste it. Your brain will constantly tell you what something will taste like from memory until your wounded taste buds say otherwise!

Without a PEG you will likely face many challenges in maintaining your caloric and hydration goals which should be appx 2500 cals and 48 oz of water EACH AND EVERY DAY.
Check into Carnation Instant Breakfast VHC which has a whopping 560 calories in a 8oz can. You don't need a prescrip but it must be ordered from a pharmacy like Walgreens, CVS or over the internet. With the VHC you only need to swallow 5 of those cans a day and believe me you may find that even 5 can be very difficult to do later on in the Tx. Also don't forget the water. That's in addition to anything else you put into your mouth. I drank that VHC stuff into my 2nd year of recovery.

Eat all your favorite foods now. Don't worry about fat or calories. In fact the more the better as far as I'm concerned. You will likely loose some weight. In fact this Tx is the BEST weight lost program out there but I only recommend it to a very special few!

Post often. We can be invaluable to you for years to come.

Very helpful - thank you both so much!

Make a list of everyone who has offered help. Include their phone numbers. Be prepared to see changes in people. Some close friends and relatives will run for the hills when things get rough for you. Then the day after you finish they will call and ask if you are better yet.

Try to have one person as your go to person. You should arrange for someone close to you that will stay with you towards the end of treatment and the first week or 2 after you finish. I didnt have a caregiver and I suffered!!!!! Not trying to scare you only trying to prepare you so that you have someone who can help you. This isnt like getting the flu, you will need help and when you are feeling the worst thats when someone needs to be with you and give you a hand. If your support system is in place, thats great.

If you havent done so already, call the American Cancer Society. They will help you with paying up to $300 for prescriptions or the co-pays, reimbiurse you for mileage you use going back and forth to rad treatments, and/or give you someone to drive you to treatments. I lived 45 minutes away from the hospital and was lucky enough to have a driver 3 or 4 times.

You could lose your voice towards the end of treatment. i lost mine for a couple weeks, my kids loved it I used a dry erase board.

I hope everything works out for you like you have planned.

Thanks Christine! I'm sure NONE of it will work out as I have planned! But at least I will know that I have tried to cover all my bases!

Thanks for the tips - you mentioned that you "suffered" by not having anyone living with you during the worst weeks - can you tell me a little about why you felt that way so that I might convince myself to let a friend stay with me - not open to it at the moment but I have a history of stubborn stupidity.

Now is not the time to be stubborn or too proud to accept help. You should have someone withyou to give you a hand.

I ended up hospitalized several times due to being malnourished and dehydrated. You will need help with monitoring your calories and fluid intake. If you get this wrong you will feel 10 times worse than you should. You will not want to eat or drink and if someone isnt there to push you to do it then it wont happen. This will lead to dehydration and becoming malnourished. You should have someone there to cook you food and encourage you to eat. I would stay in bed all day until 5 minutes before my kids came home so they didnt know how bad I really was. You should have someone there to help with medications so you dont take it too close together and get the doseage correct.

Its better to be prepared than to get blindsided by this. Not everyone has a rough time but then again not everyone has it that easy either. I lost the ability to drive somewhere around week # 3 of rads. Just having someone there will be a comfort to you.

Best of luck with everything.

Jennifer, I wish you all the best in your upcoming treatment. The other posters have given you great advice. I would add some kind of serious mouth-numbing agent, I used viscous lidocaine and even that was frankly insufficient. But it was the only way I could remotely tolerate even drinking water, let along the nutrition supplements. My guess is you'll find that even soft foods are too much as you get deeper in. But that's also likely a personal thing.

I got very nauseated toward the end of treatment, and it lasted a solid three months afterward even though I was taking Zofran. And I didn't have chemo. I found eventually that Compazine was the only thing that helped. I'm sure your doctors are advising you on this.

It's hard to speak to the helper question... I too did the whole thing alone even to the point of driving myself across town every day to RT on all but the last 2 days when I didn't trust myself with the Fentanyl patch on to drive. But I've lived alone for years so I'm used to it, and I did speak to friends and family every day on the phone. (until I lost my voice that is, then it was whispering!)

You should very much think of the people here as extended family though. If you ever want to call me I'm always available, just send a PM.

Courage, best wishes, and please keep us posted as you go along. You'll definitely get through this!

David 2

Get some Aquaphor. I had cracked and dry skin which oozed a bloody puss. This helped me and maybe could help you too. I also had pure Aloe the Dr gave me and one of the 2 helped a lot. I like some here did everything alone with no help but it would have been so nice to have had someone. THe easiest part was the driving. Everything else was a chore. Good luck.

1. Button or zip shirts, no pullovers or turtles.
2. Extra pillows so you can elevate your head as sleeping fully reclined may become challenging.
3. Straws
4. Make a chart for your pain meds.
5. Case of bottled water. (easier than walking into the kitchen when you don't have the energy)
6. Buddy list of people you can call to help

All the best with your treatment. Let us know how you are doing. We really good at cheering you on!