Hi,
We are here for you. You are already running with it so at least that part is over. I think the beginning was the worst because you just don't know waht to expect.
Where are you being treated?
Christine is right about the hearing. Kevin has pretty much lost his left ear. We are assuming it was from the Cisplatin, as that is a side effect, but he also had Taxotere and 5FU at the same time all 3 times. He did the radiation after that with Erbitux each week.
It is about the right time for the mouth sores. Have you used the feeding tube and are ready if you have to go to using it primarily? If not, be sure to get there. Sounds like your docs were good about keeping you ahead of the game. Kevin lived on scrambled eggs and pasta with butter and Ensure would he just couldn't eat solids anymore. He had a PEG, but HATEd it. He ended up losing 56 pounds, but had it to spare so it wasn't too bad. It was a lot of muscle though, that's the bad part. He is 6 months out and still hasn't put any of the weight back on permanently. He will gain a few, then lose all of it. We just go back and forth. That's with eating a full diet again.
You are coming to the hard time, but you sound prepared. We are here for you. I hope you have a caregiver going through this with you?
Keep in touch.
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14