Sue, It's great you are doing well so far. Those steroids they give you with chemo can make you feel really good. Whenever they gave me a steroid I would say it made me "feel better than I should feel" But it sounds like with you it isn't just the steroids, but you just are doing well overall. I hope it continues thruogh your treatment and, as David said, one way or the other we'll be here.

Nelie

Thanks for the encouragement everyone!

Two weeks of treatments finished - and I've struck a hurdle - I just hope it's not going to be a big one.

My tongue is not in my treatment area and I have a device that goes into my mouth before radiation Tx to push it across to the right. My first SCC was on my tongue but it was a very small T1 with good margins so they decided that it was safe to leave that out of the treatment area. I developed a couple of small ulcers on my tongue just after I had the the mouthpiece and mask made and my simulation sessions. I put them down to a bit of trauma associated with that fairly arduous morning. The week before I was to start Tx I saw my ENT to have them checked and he discussed the ulcers (which were very small) with the RO. They decided that they should not delay my treatment (which including the tongue would) and that they would keep a close eye on the tongue, but not include it in the radiation field.

My tongue is now the sorest part of my mouth and the ulcers are bigger with lots of leukoplakia and red patches around them. My RO didn't like the look of it but she says that it does look superficial. I now have to see my surgeon on Monday afternoon (after rad Tx) The RO doesn't think these changes are due to TX as other changes in my mouth due to the Cisplatin and Rads are quite different. I guess once my ENT takes a look they will then discuss the options, which the RO indicated may be to suspend traetment to have this surgery (and restart ASAP afterwards) or to wait until the end of treatment and then have it. The way this 'thing' has grown and changed over the last week I can't see them waiting too long! Anyway, I will hopefully get some answers on Monday.

As far as the treatments go I am still coping well with some sore spots starting to develop in my mouth and throat. I am having to start on mushier, less acidic foods - orange juice and tomatoes now sting - and I have to watch crunchy foods as they seem to scratch my throat. I guess in another week or two I will be on all soft foods and liquids.

This is just a 'stress' that I could well do without at the moment!

Sue

Sue:

I'm sorry to hear you are starting to struggle with your treatments. Hopefully your ENT will have some encouraging news when they look you over, and this is just a small temporary setback.

Even if its starting to get difficult to eat, keep pushing food and liquids. Eat as much as you can, it will make your recovery much easier if you get proper nutrition.

Best of luck,

Christine

I'm Half Way!!!!!

I have just finished my 3rd week of treatment and am doing fairly well. I had an excisional biopsy on my tongue last Tuesday afternoon under general anasthetic and then an overnight stay in hospital. I had radiation before the surgery and my RO was kind enough to give me a two day break before I had the next treatment. My chemo was also cancelled for the week because they felt it may impact on my tongue's recovery from the surgery. Because my tongue is stitched I had to have it sprayed with anasthetic before I could have radiation on Friday and Saturday, but at least I was able to get the bite block in and have the radiation.

My taste is still intact, but I have ulcers (mucositis) right through my mouth and down my throat which, along with my sore tongue, impacts what I am able to eat. I have not lost much weight so I think that I am still able to eat enough - I hope that this continues to be the case - I am hoping to avoid a gastric tube or a PEG. All the hair behind my left ear has fallen out (on Wednesday night it all fell out at once).

My skin is red in the radiation area and I am getting a bit of a rash as well. It doesn't hurt (partly because alot of the area is still numb from my neck dissection). I have also been put onto a low dose of morphine (comes in a raspberry flavoured sachet) and this has done wonders for my overall comfort level. I have one sachet in the morning and one at night. I can also top up with another morphine based medication for breakthrough pain. I had a bit of nausea for the first two days but that has gone now.

On a really positive note my biopsy results were clear of cancer! All in all I have to say I've had a good week!!

Best Wishes to All

Sue

Hang in there, Sue! Glad the biopsy came back clean and hope the rest of the treatment goes smoothly.

Most of us lost our hair on the back of our neck because that's where the rad exits. It will grow back but it will take months.

Good news re the results and hang in there as the ride will get tougher now. If you start to loose weight or can't seem to get enough calories try Carnation Instant Breakfast VHC as it has a whopping 560 calories in an 8 oz can.

I'm in the minority David. I lost mine on my chin , neck and the sides of my face. I kinda liked not shaving every day. LOL Back to the grind now tho.

Hi Sue,
It is great to the get the update from you and especially as it is written with such a positive attitude. What good news that the biopsy was clear of cancer.
It still sounds horrendous what you and others here are going through at the moment but a least you are on the downhill run.
Wishing you all the very best for the rest of your treatment.
xoxox
Gabriele

I had the back of the head hair loss, which is almost back to normal now. I also had the sides of the face and neck. The sides of the face are back some, but a few swipes with the razor is all I need. No need to shave the neck, except for a few hairs just below the Adams Apple.

Jim,

I also lost the whiskers above and below my chin line but the ones above my chin line came back and even darker at first but as I've said before the ONLY long term benefit from my radiation has been not having to ever shave below my chin line.