I'm starting treatments on January 5, 2015. Anyone else starting treatments this month who'd like to join in to support each other in getting through these treatments? or already in treatments?

Caregivers and those who've been down the road please feel free to offer support.

I'm wondering what I can do to prepare. I am getting rads and chemo. I'm wondering about creams to support skin for the burns before they start and during, swallowing exercises and things like that. Hoping we can help each other.

Hi!

My husband is currently in treatment similar to yours. Here is the few things I can strongly recommend:

Get a journal. Write down what/when you feed yourself, when you take meds, when you have bowel movements, symptoms, and which medical personal you had on each day. This is important because you need to keep track of calories. Medications sometimes aren't effective anymore (especially pain) and if you're taking them frequently and still feeling pain you can get something better. Cisplatin can cause hearing problems, so if you have ringing in the ears or other hearing problems report it right away. If you have any new symptoms through your treatment tell your doctors so they can prescribe something or offer advice. You will see so many medical professionals and sometimes they will have opinions that differ. I highly recommend writing down the names of your nurses and people you talk to on the phone. This saves confusion if should something come up.

He is using Miaderm cream. Maybe someone who has tried different creams can offer you their opinion on which is best. You will have a speech therapist that will give you swallowing exercises to do, but the best thing is to keep swallowing as much as you can.

QueenKong - welcome to the family, we're here to help. I'm sure your medical team will be recommending creams for the inevitable burns as well as various mouth rinses, etc. Once you have those in hand you can query us and folks will weigh in on what they've found effective. For maximum burn relief Silva Sulfadiazine was the stuff for me, at least for the last few weeks. It's a fairly common salve that's been around but I found it worked beautifully.

Assume you've been advised about preventive and ongoing dental care. Have you had your thyroid levels checked? It's not a bad idea to establish a baseline and I wish I had known about it back then.

You didn't mention whether or not you were (or have) getting a PEG. That too is something we can all discuss as you need.

You've been through a lot, and this treatment isn't easy. But you sound like someone with a lot of courage and determination. I know you'll get through it!

Never hesitate to ask any questions here on the forum or to PM people. This is a family you didn't ask to belong to... but you won't find a better one.

Sending every good thought you way.

There are SPOHNC, Support for People with Oral and Head and Neck Cancer, meetings in local chapters that meet once a month. In NYC they are at Mt. Sinai, NYU and Beth Israel, others are in Long Island, Upstate NY. The one I attend is facilitated by a Speech and Language Therapist, SLP, and is very helpful.

As far as creams, I only needed Aquaphor, then another time used Cetaphil, which was less greasy, as both were suggested. I also used liquid soaps, either Aveeno, Cetaphil or Dove liquid soap for sensitive skin.

https://www.spohnc.org/local_chapters.php

Good luck with treatment.

You may already know, but I didn't mention not to put any creams on the day of radiation, only after. You want a clean surface being radiated. The same goes for any other ointments, oils, fragrances. I didn't use much scented anything either on myself, around the house or want to disturb others in treatment due to chemo sensitizing your senses. I could smell garlic a mile away on people's breath, and some perfumes/colognes were like a smack in my face.

Midwestwife - That's a good idea, keeping a journal. I'm going to start one tomorrow.

David2 - I don't know what a PEG is so I don't think I am getting that. I assume they have checked my thyroid levels.

PaulB - I'm going to look into that support group. I won't be wearing any lotions or fragrances when I start except maybe a little coconut oil on my legs and arms to prevent dry skin.

I woke up today with a bad cold!!! Will they delay start? Should I ask?

I don't know about a delay, possibly, but tell your medical team everything, and may advise you what to take, do. Any OTC products should be inquired about also. Maybe try some fresh ginger tea with honey and lemon.

Thanks PaulB, I am doing the tea and drinking. I'll try the neti pot too. I called and left a message but no one is in and I have to show up at 8am to start with the labs and everything then chemo (cisplatin) si I guess I'll find out then. 6:45am subwat to Manhattan

They may want to see you anyway to evalute you, do labs. I never used a neti pot, but several things I know is not to use tap water, clean it thoroughly, don't use cold solutions in it. If the commute gets to be too much there is The American Cancer Society's Hope Lodge on 32nd street between 6th and 7th Avenues. Its free of charge, has 67 guest rooms, and better than many hotels. I stayed there 6 weeks in 2012. The only requirement is travel time to be more than an hour, and most places are by commuting. MSKCC, if treated there, have shuttle busses every 20 minutes to and from. Others need their own travel arrangements...subway, bus, taxi, ambulette, access-a-ride. See your cancer centers social worker who makes the arrangements.

Ask about after hour concerns since most seem to occurr at night, weekends and holidays. Mine gave me a contact sheet, including the oncologists number. I called once, and doctor called back within 30 minutes.

Good luck

QueenKong, I hope your treatment started well today. I started my radiation and will start chemo tomorrow. Im hoping for a quick 7 weeks.