Hi Tina,

Please note that the chemotherapy is NOT the primary treatment - it is the surgery & radiotherapy.

The chemo in Jen's case is used in low doses which amplifies the effect of the radiotherapy treatment, as well as get rid of any cancerous cells that may have escaped the lymph nodes to other parts of the body.

Hope that helps
Jay

Yes, I gathered, given that I have 30 rad and only 3 chemo, but I was worried about kidney damage.

By way of update, I am eating solid food, which is pretty damn exciting. Having perogies with bacon for dinner tonight! I have lost a bit more weight, but nothing substantial, and I'm still 145 lbs so I think I'm doing ok (that's only 4 lbs less than the day I went in for surgery).

Feeling pretty good, went into my office a couple of times, just for short periods, and it picked up my spirits to be doing something constructive. Everyone is shocked at how well I am talking (although I think I sound like the Godfather).

Waiting impatiently for the rest of the swelling to go down on the tongue, and less impatiently on the neck.

I am working hard to recuperate and my range of motion is coming along well on the shoulders and neck. The numbness on my ears is very irritating though.

All told I am doing very well. Best wishes to everyone else on their battles. I'm sure I will need your encouragement when phase 2 starts.

And we will be here!!
So glad to get your update. I think of you often. You are one fiesty lady so you will do well!!
Kathy

Hi Tina,

Ask the MO about your chemo treatment and see how they would feel if they put you on 7 x smaller doses than the '3 big bag' method which seems to be the plan in your case.

We had to make this decision and the 7 smaller doses were supposed to be more tolerable and it seems to be the case with Jen

Hi Tina

Glad that you are recovering well!

I am also doing well, today I tried to chew on the left side where the surgery took place - good progress)

Will have another surgery in a couple of weeks though but much simpler then the first one.

I also lost some weight - 4 kilo less than before surgery. I am actually glad that I have lost it as I had a bit more than I should have) now it's almost back to normal:) docs say if I lose more then they want to give me something to do with calories but I don't mind losing 2 more kilo:)

I agree that numbness is annoying I am feeling like the terminator - part of my face differs from the rest:) My ear is almost back to normal though... It's lower left part of my face and left side neck that are numb..

I wish you all the best and good luck with your phase 2 which I hope will go very well!

Max

Thanks guys (and girls). I'm keeping a notebook of things to ask the surgeon. I meet with him in 2 weeks so he can assess my recovery before scheduling the rad/chemo, so I will bring up all the issues raised.

Found some good info on carboplatin vs. cisplatin so that will be addressed too.

I saw something in various posts about a honey and some "magic" mouth rinse, but I'm not sure what people are talking about. Can anyone shed some light?

Tina - Magic Mouthwash is a prescription made up of several ingredients. My son used it and it was very helpful for numbing the inside of his mouth so he could eat. After using it for a while, and found that it didn't work as well, he used something that the pharmacist recommended over the counter and that worked. Later he went back to the Magic Mouthwash and was helpful again. You might ask your doctor about this. About the honey, that is Manuka Honey which some feel is very helpful in healing inside the mouth. You can get it at health foods stores and at 16+ strength. Anything you think about using should ALWAYS be checked out first with your doctor since even some vitamins may not be recommended or could be harmful. Everyone is different in their recovery. The Oral Cancer News has a couple of articles on Manuka Honey here:
http://oralcancernews.org/wp/?s=Manuka+Honey&x=0&y=0

So, I have all my follow up appointments this week. Gotta say I am feeling a bit nervous, as I will get the pathology results, speech assessment etc., all within the span of a couple of days, along with a more definite time frame for the start of chemo/rad.

I definitely need some goods news now, as I know problems will arise during phase 2.

I am eating normally, which is awesome, and back to work about 90%. I feel good, but went from sounding like the godfather, to Elmer Fudd (having trouble with C, G, R, S and T's), although everyone says they are shocked at how good I sound. I don't agree as I dictate stuff to my assistant, and abhor the sound of my own voice, but I am holding strong in the belief that it will get better. Preferably sooner rather than later....

Max, I expect your 2nd surgery is coming up soon - wishing you the best.

If I figure out how to post a picture, I will, I have a cool one that I think everyone will like. I'm a luddite, so not so bright on techno stuff. I have an IT guy at work for a reason...

We are the hardest on ourselves. Trust me probably do sound terrific. I orice my flaws as well, but others say they don't. Hugs! good luck, hopefully you'll get the post surgery all clear.

Ok, so met with the surgeon today.

Margins are 100% clear.

Pathology on the nodes revealed NO cancer. The PET may have been a false positive.

My surgeon has told me to meet with the radiation oncologist to determine whether I should have radiation or not (he is leaning toward not).

Meet with oncologist on Tuesday.

Not sure whether I can get excited or not...but regardless of whether I need further treatment, the news is awesome.