To Tim and Lisa:
Lisa-pouring directly into the "funnel" inserted into the tube is easy. Just pour 1\2 a funnel full at a time and let it slide down.The important thing is that the stuff going in is thin enough not to cause a blockage. So if you are pureeing stuff-get the lumps out- and thin it down. Finish with water to flush the tube.
Tim- beer has calories -if you like beer and John does- and it's part of his "old life". Don't be afraid to try anything that will keep lots of calories flowing. You are doing well so far. Keep it up! Amy

Amy,

Thanks for the insight. Another long day is over and I'm getting ready for bed. I made the 1300 Calorie shake today. My wife said it tasted great. I wish I could taste it, I did manage to get about 8oz in me though. My throat is really sore right now, tough to swallow even water. I had the patch bumped up to 50MG so hopefully that will take the edge off a bit. I was trying to stay away from the morphine because of my constipation issues but I gave in and had some of that too. It is such a terrible cycle. Take the pain meds and get constipated then take laxatives until I finally go. The only thing that worked for me lateley is magnesium citrate and that generally gives me the runs for a couple of days. My RO has precribed another laxative called Lactulose Solution, has anyone used it? If so did it work?

Anyways just wanted to say thanks for all your help.

Tim Stoj

Tim try taking stool softeners 'daily' this might help. My Dad also stayed away from pain meds as much as he could because of constipation. Do your cans have fibre? that helps also.

Tim what is a 1300 calorie shake? sounds good!

Amy thanks; that's interesting.

Hey Tim you are almost finished; way to go! Just remember, it does get better.

I had met a real nice man online who had finished his treatment a few months prior to my Dad's treatment; and he told us many times that it does get better. And he sure was right!

Lisa

Lisa,

I found this recipe on one of the other forums. I htink it's been passed around quite a bit, but I do remember someone saying that it had 1300 calories in it?. My wife loved it, but I couldn't taste it.

2 cups ice cream
1 cup whole milk
1/2 cup half-and-half
1 package Carnation instant breakfast
1 tablespoon malted milk
2 tablespoons Ovaltine

I'm already on stool softeners and they aren't working for me. My cans of food don't say anything about fibre.

Tim

This thread has gotten fairly far off the initial post (the other posts are all good info, so this is not a complaint) but I wanted to get back to the first issue.

If you have existing hearing loss or have a reason to fear hearing loss from the use of cisplatin, you can get the newer drug carboplatin either as a monotherapy or in conjunction with a taxane (e.g. Taxol). Although some literature seems to show a slightly better result in certain types of cancer with cisplatin, it is far more toxic (e.g. kidney toxicity, ototoxicity and is strongly emetic) . Our medical oncologist (at Hopkins) whose specialty is head and neck cancer is finding as good results with carboplatin, which she rotuinely gives to those with hearing or kidney issues -- or who cannot tolerate cisplatin for other reasons (severe nausea is common).

She told us that the radiation is the "workhorse" in the treatment and chemo adds about 10-15% effectively, primarily as a radiosensitizer. The difference in efficacy between the two platinoids is at worst represents a very small percentage of the treatment.

Ask about carboplatin -- my husband had it and found, with the new serotonin anti-nausea drugs, chemotherapy to be (in his words) a "non-event. " The radiation and te amifostine he took were far more rigorous. His ENT feels his getting carbo is one reason he made it through treatment in relatively good shape, able to eat throughout etc.

Gail Mac

Gail,

Thanks, I meet with my MO next Monday so I will definately be bring up the carbopatin.

Tim Stoj

Tim,
Gail is absolutely correct in the potential of Cisplatin to cause permanent hearing damage but it is fairly rare. What is more likely is radiation damage to the eustacian tubes causing fluid buildup in the ear canals. That happened to most of us and it was like being underwater or your ears not popping when making a change in altitude. I suffered with that for quite a while during and post treatment until the tubes healed up and started functioning/draining again. They could see the fluid buildup on the MRI's. I had physical pain as well.

Always discuss and hearing changes with your MO. Ringing in the ears and difficulty in hearing should be reported immediately.

When I complained of serious hearing changes after two cisplatin treatments, the older MO immediately switched me to carboplatin and taxol (goodbye hair). He said many years ago he had a patient who ended up deaf as a post, and that less than 1% of patients ran that risk. The carboplatin/taxol treatments I then received seemed to do that job as I am closing in on five years and had my hearing tested recently and was found to have no loss at all.

Gary,

That's what I initially thought (I read a previous post) until I spoke to my RO. He says that my ears are getting a very minimal dose of RT and he felt it was more related to the cisplat. My concern is that it's not usually wise to jump horses mid race...anyways I meet with my MO on Monday and will lay it all out there and see what we come up with.

Tim

I met with my MO today and he scheduled me for a heaing test on Thursday morning. His thinking is if my hearing isn't normal for my age then he is going to switch me to carbopatin. Are the side effectd very different from Cispalt?

Today was my 25th day of treatment, only 8 left. Then I can start the recovery process.