Hey, Everyone! THANK YOU to Gary for his "Survivor Stories" idea I've just read the entire thread to Tom (is that why I'm a bit hoarse right now????) and we are both sooo pumped!
He had his 3rd chemo infusion yesterday - doing OK so far. The PEG goes in on Tuesday (his weight is not holding well) and we had the 8th radiation treatment today. Doc has taken him off the Xeloda because it causes him to burn..face/chest/arms/feet/hands....so he's happy about losing those extra 6 pills each day.

We've taken everyone's good advise; the pain meds are 'at the ready' in case he begins hurting this weekend. So far, however, he's OK....the neck is a bit red, but that is partially due to the Xeloda, we think. His throat is just a bit sore, but not enough to really cause comment.
He'd like to know if talking will be a problem (he IS a talker !)
Love you all! SOOOOOOO wish we could meet you this year, but perhaps there will be another get-together next year?
Nicki

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Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT to begin 8/7/04 with surgery to follow.

Nicki, I am glad to hear everything is going so well. Before you know it, you will be past this tough stage. With regard to talking, nobody told me, so I was very surprised about a week out of rad to find my voice reduced to a soft whisper. This lasted for about two weeks. I called the rad department and had one heck of a time making myself heard, but they told me it was "normal" and would go away. It did. Never completely without voice, but my husband *claimed* not to be able to hear me when I was in a different room (grin). Probably the only part of the whole grand adventure that he appreciated.

hi Nicki,

it's good to hear that Tom has started treatments.

i had rad&chemo at the same time. after a couple of weeks i couldn't talk at all. so for 6 weeeks of treatment and 6 weeks after treatment, i wrote notes. the doc's told me not to talk or wisper. things slowly improved and my voice is essentially normal now... it took months.

different folks have different responses to various treatments, so please don't think that my case will be anything like your husbands. he may well be able to talk without problem.

best wishes to you both,
larryb

Hi Nicki,
about 3 weeks into my 10 week radiation treatments my voice got a little "froggy", and pretty much stayed that way for several months. I never lost it completely, but I couldn't talk very loud for a while. Funny, but it wasn't until my voice returned to normal that my Mom believed I was doing well. Good to hear that treatment has started and is going well. Keep up the great attitude.

My best to both of you,

Chuck

Nicki, glad to hear Tom is doing so well. I lost my voice for about a month. Used a little etch-a-sketch-like board with a pen to write messages. Wasn't the same as talking, but had to keep what little voice I had for work as I was still working through most all of the treatments. It does come back, although I am still a little froggy in the morning. Just let Tom know that its nothing a bottle of water can't take care of.

Addendum. When my voice came back, it was normal except that I was missing the high notes. Just recently, two whole years later, I suddenly have them back. Amazing! My shower singing is much improved (grin). Patience is apparently something worth practicing in our recovery. I thought two years ago I was doing great, but over time, little things just get better and better. Tom has much to look forward to, Nicki.

Joanna

Joanna, I agree with you that shower singing improves a lot when time goes by. I was once worred that the 'froggy' voice will stay with me for the rest of my life but I am wrong. I can be very clear on most occasions and of course the hoarseness still affects me from time to time especially when I don't have water to lubricate my voice box. By the way,Joanna, I have sent you a private message a long long time ago and it has never been read by you. Don't know why. Nicki, tell Tom not to worry about his voice. It will get better for sure.

Karen.

Appreciate all the encouragement about the voice. SOMETIMES I think the prospect of some quiet time will be wonderful, but in honesty I'll admit that I love that he is generally so talkative. I never feel left 'out of the loop' when he gets home from work.
He DOES have a really hard time several times a day getting his throat cleared....I didn't expect anything like that for awhile. He also had a sip of wine, which he promptly realized was not a good thing!
The skin on his neck is beginning to blister a bit, also earlier than I expected. We are keeping it 'greased' in order to alleviate any pain we can.
I'm also really happy to hear that so many of you were able to continue your work....He's done pretty well in getting into the office so far, and I hope that will continue as it does great things for his overall well-being.

I've got my fingers crossed for the rest of this chemo round - - since he's not taking those nasty chemo pills, this weekend is LOTS better than the previous rounds. Guess I'd best wait until tomorrow to jump to conclusions, but I think he'll get through this week much better.

QUESTION - as I didn't think to ask the Doc...
Does anyone know if they would want to stick another chemo infusion into the mix since they took him off thr 2-week course of pills that followed the Cisplatin? I got a funny 'fear' the other day that if he's not going 'full-strength' on the chemo, that something bad might not get killed...............

I feel like everything up to this point has been practice, and the real game is about to kick off.
I truly do appreciate all of you and your help.

We are having a gorgeous weekend (if a bit windy) after rain/storms/tornadoes all day and night on Friday. Tomorrow is going to be glorious so I'll get out and MOW THE GRASS!
Lucky me

Night-night all!
Nicki

Nikki,
Try to find a product called Aquaphor if you can. I found it at Krogers but I'm not sure if your area of Virginia has that supermarket. It worked wonders for my lips.
Take care,
Minnie

Hey Nikki,
Dan used Aquaphor and the Oncology dept. at U of MD just kept giving us little sample tubes to cover what he needed. It helped alot as Dan got pretty burned. It ran and seeped so the Aquaphor helped. They also gave him something stronger for his burns during the last weeks. Ask the oncologist for something. We never got anything unless I read something and asked. We never were turned down once I asked! Dan also lost his voice completely for 6 weeks. It was a lonely time, but he used an erase board when he needed to talk. Dan was not able to work during his chemo/rad treatments. He was on long-term disability thru his work for about 7 months. It was hard enough for him to go from the recliner to the hospital for treatment and then home to the recliner. Just realize if Tom experiences this, it will be quite normal. You guys are in my prayers...you will have some tough days in the near future...just remember to have a great support system in place for you both and it does get better!
God bless,
Debbie

I've been done for a couple of weeks from my latest round of treatments -- my voice is a bit froggy and has been since my second surgery (the neck dissection) in June... I notice that I can't sing very well anymore (not that I really could before)... I'm fine if the notes are low, but if they go up at all, I just squeak... It's frustrating at church but I guess that's an OK trade-off to make, considering I would never be in the choir anyway...

Eric