Figure I'd give an update while I was still riding the steroid induced energy high from chemo today!
Oral ulcers advancing and diminishing making eating anything with sodium quite painful.
Sick of sweet shakes already - I know, working on a positive attitude since it's evident that the shake will be what gets me thru this nutritionally!
Radiation effects to the neck have been minor thus far.
The Erbitux (erbisucks) rash is no fun at all - I expect my chin to turn black and fall off any day now - I'm a bad patient and truly have no appreciation for the well meaning nurses and doctors who kindly tell me "The worse the rash the better it's working" Really??
Energy level is diminishing - so pretty much a similar path that so many of you have experienced!
Still rolling between feeling sorry for myself and immensely grateful for all the resources, love and support that I have. Inspired too - by many of you who have been thru so much.
Being able to learn thru you has been invaluable.
Continuing the countdown!!
Take good care Everybody- Jennifer

Jennifer, I was wondering how you were holding up. Im a firm believer that a positive outlook will help make what you are going thru easier. Many cancer patients take anti-depressant meds to help them cope.

Im not sure if the list you made included Carnation very high calorie. It can be purchased thru the Amazon link so OCF gets a small kick-back. The Carnation VHC is 560 calories per can. You may want to give it a try. Ive used it as have alot of others who went thru rad.

Rinse your mouth a few times per day to help with the mouth sores. Mix 16 oz warm water, 2 tsp baking soda and 2 tsp salt. If the salt burns too much then decrease it or omit it from the rinse. Swish/gargle for a few seconds and spit out. There is also magic mouthwash. Ask your doc for a prescription. It has varying ingredients. Mine was made of lidocaine, malox and benedryl. That is swish and spit too. Its short lasting, you might get 30 minutes out of it. It will numb your mouth long enough to eat a meal.

Its not easy and will get progressively harder as your treatments go on. You can do it, I have faith in you!! Hang in there.

Hi Jennifer-

I've been wondering how you were doing. Good to hear from you. Hang in there-- get lots of rest and keep pushing the fluids and calories!! You'll make it!

I only have three more RTs to go!!

Susan

Jennifer - courage, courage, courage! I know it's tough, but keep your eyes and mind on the outcome and your calories and fluid intake up. Take lots of naps!

Thinking of you.
David 2

I get the part where you get sick of the sweet shakes. I had a tendency to experiment with different foods or shake flavors and then just stick with one I could handle for a week or so. Then I would experiment again, find something else I could deal with and repeat. It just made eating easier. I ate pretty much the same thing every day because I knew I could tolerate that particular thing. All soft boiled eggs one week, all banana shakes the next. I supplemented with boost and carnation instant breakfast.

See if you can mix it up a bit

Susan - 3 RT's to go? That's awesome! You must be so happy to be so close to the end of that countdown! How are you feeling?

Thank you Christine, David and Kelly for the advice and encouragement- I need every bit of it! This treatment can be tough!! Keeping up with the calories wouldn't be quite so bad if everything didn't taste like varying degrees of crud! I regret ever taking my taste buds for granted!

Jennifer

Hi Jennifer,
Glad you posted an update! I hear ya on that Erbitux! My sister had a hard time with the rash. Ask your dr's if you can have SSD cream for the rash? That helped my sister out a lot. I'm trying to remember the real name of it. I will ask my sister and get back to you but I am sure if you say SSD they will know. Also my sister got slippery elm bark lozenges which really really helped with the mouth sores(seems like the Erbitux makes you get them faster). Hang in there! My sister just had her first clear scan which is an amazing feeling.

Hi. Just spoke to my sister. It is called silver sulfadiazine cream. She used it and it helped her skin.

I will give the thumbs up for Sulfadiazine cream. I did hate it because it was so yukey to put gobs of cream on my nect but it did do wonders, I had pretty severe rad burns on my neck and shoulders and the sulf cream really calmed it down and helped healing.
I also was told to put head and shoulders hair stuff on my rash, weird but seemed to work!

Steve

Silver Sulfadiazine - definitely the way to go. It's fantastic stuff.
d2