Hello all,

Thank you for your supportive words on my last post...John is doing well, he is finishing his third week of radiation with three more weeks to go...plus he will get carboplatinum and taxol each Tuesady for the next three weeks...I wondering what to expect?

He now has some mucositis, soreness and swelling of his flap, and pretty significant pain near his temple. He is taking neurontin and oxycodone for pain ... using the gtube for feeds (the falp and tongue swelling are making eating really difficult) and he is still able to go to work for half a day...he has not chucked anymore chocolate snack pack puddings, but i told him he is welcome to do so in the next few weeks (especially since it was so funny after the fact!!!!)... wonder what else to expect... we both are a little scared about how much sicker he is going to feel...right now he has good days and bad days...we expect mostly bad for the next few weeks...but any other suggestions would eb greatly appriciated...

thanks in advance,

Sara

Sara, I had that chemo mix and the only side effect I had was total loss of the hair on my head from the taxol. There was absolutely none of the nausea and hearing problems that I experienced with cisplatin, so I expect the only other downside will be the time it takes to administer the drugs. As far as the remainder of radiation, I did not find that it got progressively worse at all, but pretty much stayed at the same level except that I got more tired as the weeks went by. The worst gunk in my mouth didn't kick in until after, but there are lots of tips on this forum for dealing with that, and of course every patient is different. As you and John have reached the halfway point, I suggest that you begin counting down. When I did that, it seemed to make the time go faster. Whatever you do, know that you are nearing the end of treatment and everything will eventually be much, much better.

Deleting double post.

Joanna is so right...........a countdown helped me have something to focus on. The highlight of my day during radiation was when I got home from my appointment and was able to cross off another day on the calendar on my fridge. I still have that calendar, it was a positive object for me during that time.
Good luck with it. I didn't have any chemo so cannot help you there, but I did seem to get more tired as radiation went on.
Minnie

Sara,

I know how tough things are right now but you both only have 3 weeks left of treatment. Congratulations! My mother had taxol for 8 months with a pretty big dose once a month. She did better with that than any other chemo.

The radiation does stay about the same with a lot of thick mucuous for a few weeks after it ends. I worked up to the last 2 weeks of radiation but it was more the chemo that got to me. John will most likely get pretty fatigued a few weeks after the radiation. It hits some people during and some people later and some even later. My fatigue was not as much of an issue until about 3 months post treatment. Keep up with the blood counts and ask for Procrit as the red blood goes down. It really helps. Also, any excercise will get the oxygen flowing better in the blood, even a walk back and forth down the driveway is better than nothing.

Good luck to you and John.

Ed

Hey Sara,
Dan had same mix of chemo drugs that John is having. He had seven doses, one every Monday. He would go pale as the drugs went in. It took about 4 hours total. On Monday and Tuesday he was good, started tiring out and feeling worse Wed thru the rest of the week. He did not lose all of his hair and didn't get very sick from the chemo. As radiation went on (he had 41 treatments) he got worse, was very weak.He lost his voice totally for about 6 weeks...that was a bit hard because no one told us that might happen. The last weeks he made it to treatment and back home to the chair and slept most of the rest of each day. He had max radiation possible and it was hard even two weeks after radiation. He used the PEG from week 3 on and in this last month (almost 3 months post treatment now) he has been able to drink some liquids and eat some food. He is hoping to get rid of PEG after next week. He is so much better now...just remember to measure in weeks, not days. That helped us alot. We have a great support system and total belief in a God that crys with us and knows what we are going thru, which also helped us manage. Just keep thinking it does get better!!!b

Take care and know you are over halfway!!

Debbie

Thank you all!

It is so good to hear about what is ahead...only 15 more days of treatment!!!!!!!!!!!!!!!!!!!!!!!
(and I know a long recovery!)

Thank you...I'll keep you updated!

Lol,
Sara