Well, we are on our way. Dan had his first Chemo of Taxol and Cistoplatin on Monday. He will have 5 more on Mondays. He is having 6 weeks/5 days a week Rad at 70 gray. First days were very rough as everything ran late and we had to sit for hours because we were late to each appt. due to their errors. But it is the University of MD Medical Center and the doctors are very good and they have a tumor board which it helpful as Dan's tumor could not be all removed with surgery since it's around his carotid artery and in the wall of his jugular. He had a PEG tube inserted Tuesday which is sore around the site, but hopefully will get to feeling better soon.

A few questions. On the left side rad area, the tumor is right behind and under his ear. The rad is really burning and hurting his lower ear lobe. We have asked but they are not sure anything can be done as it is in the direct shooting site. He also is burning pretty good already for only 4 days. They gave him Aquaphor to put on after rad each day, but during afternoon and evening he puts a cold compress against the area to relieve the burning some. He has major constipation from all the drugs, but we are trying to work out that with some prescriptions and some over the counter like Colace and Milk of Magnesia. It's become an everyday problem, which is difficult because he was always regular every day! Feeling some nausea from the the chemo but has some pills for that, too. I don't think it will be long before we will try using the PEg tube. They said 8 cans of Boost Plus everyday, which was supposed to be covered by insurance, but found out yesterday it is not...neither is the flouride trays made by the dentist for teeth protection.

Anyway, just looking for any suggestions to bowel problems, lots of burning already in first week, and any other info you might have as we struggle through the journey.

Also, has anyone else had a tumor that they could not take during surgery because of where it was and attached to?

Thanks so much for all the good info on this board. It has enlightened (and also scared) me but I feel like when I go to meet with the medical professions, I am in better control and can ask them questions that they are quite surprised about and usually answer it but have been told I read too much!!

Dan, Bob and Brian - I have so appreciated all the information and personal experience you have shared.
Thanks,

Debbie

Hi Debbie,
I am sorry Dan is having such problems so early in his treatment program.

I had major constipation problems as time went on in treatment and it can be pretty severe. I had a lot nausea caused by it as well as other problems. I tried all of the over the counter stuff with poor results. Talk to your doctor as soon as you can. There are prescription drugs and other ways to control this. This is a common side effect and they should be able to manage it.

The obvious dietary things are more fiber in the diet. The not so obvious are avoidance of things like rice and bananas which are binding agents. It can also be exacerbated by not enough fluids. My understanding is that cancer patients must take in 2-3 liters of water (or other equivalent liquids) every day. Certainly you should also discuss these issues with your nutritionist.

And about the Boost, the insurance companies typically won't pay for over the counter foods or drugs. There are prescription canned foods for PEG feeding that they will pay for, again, talk to your nutrionist for advice.

Hi Debbie,

Ask your Doctor for a script for the boost, The stuff I eat is called Jevity. The same as Boost or Insure. It has all the calories & proteins needed. Mine come in 8oz. cans and I input 8 cans per day. Gary is correct in that if your Doctor orders the food your insurance co. should pay for it. Mine Does.

My tumor was on the carotid artery and they left some cells on during surgery. They said the IMRT radiation would take care of the remaining cancer cells. I hope they are right!!!!

I wanted you to know that I am praying for dan every day. I wish nothing but the best to you both.

Your Friend, Dan

Hi Debbie,

Wow your husband seems to be having the some of the same problems my Dad did. As far as the constipation, we tried just about everything (prescription and over-the-counter) until finding the right product. So I would keep trying.

Also, my Dad's ears were both severly burned & bloody pretty early on (2 weeks I think). (He said it felt like he was on fire!) I don't any solution other solution to that problem except using the Aquaphor. My mother and I applied it several times throughout the day. The only thing I can say, is that the ears healed pretty quickly (around 2 days) during about the 6th week of treatment.

He is also in the same boat as your husband, as far as not being able to do surgery first due to the location of the tumor(s). He has completed chemo and radiation, and is waiting to see if surgery is necessary and what type is so.

Take care!

Oh one more thing,

Like the above posters mentioned, ask the Dr. or nutritionist for a prescription for PEG food. At first my Dad's insurance co. said NO they were not paying (they usually say that about of lot of things) but you just have to INSIST they do. They were also not going to pay for his Ethynol (sp.?) shots but we fought for that too!

Once it was squared away, a company delivered the food by the cases, along with a lot of supplies.

Don't take "NO" for an answer! GOOD LUCK!!!

Debbie.....

Make sure you get a script for the Boost/Jevity. My insurance co. also balked at covering that particular expense but I fought them on it and I won. Canned liquid food is the only way your husband will recieve the nutrition and calories he needs to heal, he has no other option.

Good Luck!

SIncerely,
Donna