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!

Jennifer,

I suggest audio books and audio plays and a CD/MP3 player with speakers for times that you may not feel up to watching TV or reading. Your library probably has a collection of audio books and they may let you have them longer or even pick up and drop off if you explain your situation. I recommend David Sedaris narrating his own books for a great laugh. Turn down the lights, rub on some Vicks, snuggle into the recliner and let uncle Dave help you feel better

You may also want to indulge in an obsessive hobby. For example, write your novel, become fluent in Romanian or start working towards your Nobel Prize. This will help you keep your mind off the discomfort and you might be able to skip the narcotics.

Before Tim�s surgery a friend gave me a credit card holder (a very nice leather one from Cole Haan, but she forgot the matching purse) for the business cards for each of his 3 ENTs, 2 oncologists, 3 dentists, GP, the insurance company, the pharmacy, the dietician and anyone else he is seeing at the time. Many are in my phone contacts, but when I�m on the phone with one and they�re asking for the number of the other it comes in very handy.

You will make it through this!
Susan

Get an electric razor too. Leave the blades alone.

Jen - Such great suggestions above! It does help to be prepared. As time goes on and your needs change, make a list of things you need or would like to have done. Then when someone says "Is there anything you need", you can show them your list and suggest they pick something convenient for them to do or bring you. My son was always hesitant to tell people what he really wanted, but when he finally did tell them he found them very pleased to be able to help him out and to know it was something he really wanted! Having a list ready for them to pick from gives them the freedom to choose something easy for them to do or get and can avoid the uncomfortable feeling of having them say "No, I can't do the kitty litter that day because I have a root canal scheduled" or "I really don't know how to do laundry". You already have wonderful suggestions above for a great list to show friends when they offer to help.

Hi Jennifer-

Make sure you have baking soda and salt on hand. My RO had me rinsing/gargling from week 1 with baking soda/water solution. Also, I know you are up north where it is cold, but avoid wearing thick shirts to your treatments. I made the mistake of wearing a turtleneck one day-- made the mask so tight I thought I was going to choke to death! Now I make sure my shirts don't come up on my neck at all! Bed Bath and Beyond sells a wedge you can use to elevate your head when sleeping-- it was $29.99 at the store here. You probably already have tylenol and ibuprofen on hand-- that is all I have had to use so far (except for last week and that pain went away once they figured out the yeast esophagitis and started treating it). I just finished #17 and am still driving and able to get out a lot without any trouble. I asked the radiation nurse yesterday when I should expect the mouth sores to hit (I thought maybe I was off the hook since that hasn't happened yet)-- she said week 5 is typically when things get pretty rough and that I would not be liking her any more! I'm just hoping week 5 doesn't hit until after XMAS!

Oh- one other thing to have on hand for when you do start the strong pain meds-- something for constipation! You might ask your RO's office what they recommend.

Do you have fluoride trays for your teeth? If not ask your dentist if you need them. My RO has me wearing them during treatments to help protect my dental work-- I have a lot of fillings/crowns and apparently the radiation is hard on them. You also need to make sure to floss daily, so add floss to the list if you don't already have that.

I have been told if you register with the Amer. CA Society you can get free skin cream from them to help deal with the radiation burns/irritation. Aquaphor is very good-- for some reason my RO likes to wait and start that once you are done with treatment. If your skin gets really itchy over the counter cortisone cream helps.

I think you can go into treatment confident that you have done all you can to be ready! You are being very proactive!

Keep us posted! You are in my prayers-- what time will your treatments be?

[quote=EzJim]Get an electric razor too. Leave the blades alone. [/quote]

Jim, dunno about you but I was down to the barest wisp of whiskers on my upper lip and chinny chin chin by the end of RT. I took a photo, and between those last vestiges and my gaunt appearance my brother told me I looked like an aging (thanks, bro) "F*** off, mate!" British rocker...

Thank you ALL for your thoughtful responses- you have been so helpful - I feel as prepared as possible!!!
LOVE David Sedaris Susan(slash), I'm putting that on my list!
Thanks Susan (fullofquestions) for the wedge tip for sleeping - that makes sense that some HOB elevation would become necessary. Also, yup, have the fluoride trays and am already using them.

Not sure why I might need an electric razor though...something I should know about atypical hair growth?
Jennifer

Wishing you good luck today.

David. I never lost much hair growth at all after being told I would lose it all. I shaved every other day and still do. I would have gladly traded my hair for a few teeth. LOL even 4 teeth would be nice. But why chew what you can't swallow. Heck, I am a happy guy anyway and will survive. Did you kick his a--? LOL. I lost so much weight I sure couldn't help ya.

RE: the electric razor...It doesn't sound like you'll be shaving your face, Jennifer! I think that suggestion was for the guys out there!

Jim, as usual your positive attitude is inspirational!
d2

Anita, just what are you thinking? LOL

EZJim

Isn't the question: what were you thinking.?

Jen

No, you will not suddenly need to shave as a result of radiation or chemo. You can safely leave an electric shaver off your list.
However, Susan's post reminded me of another essential item if you do get opiates: suppositories. I have a graphic post here on how to use them but they are so much better than the laxatives usually recommended. You can control the time of the "action" wit suppositories but not laxatives. I blocked out that part of my Cancer "happy hour" routine in my short term memory so I missed suggesting it.
Also, since you are getting Erbitux under no circumstances should you forbear or delay putting cream and oinment on your skin until your radiation TX are done. It will be way to late then.
Charm

I was wondering what would Jennifer need with an electric razor. Unless she is already growing a beard...hmmm. LOL