Welcome Roma!

Glad you are able to find this site, it truly is a blessing. I suggest, writting down any questions you have so you are ready during dr visits. They bombard you with a ton of information at first that you are only able to retain so much of it. Being able to jot stuff down may help a bit.

Have your husband eat, eat and eat whatever he would like. Go to your favorite restaurants and have him eat his favorite foods.

We are here to help you guys get through treatment!

Hi Roma and welcome. You've gotten a lot a helpful advice here already. You're own idea of writing down questions to ask is very good, also take notes during dr's appointments as your husband may find it hard to focus on all the details. We have all survived this and have had posters who are 20+ years from their battles and still living the good life. And you can imagine how much better weapons there are now opposed to 20 years ago. In your role as caregiver you will definately not have it any easier than he will. Many here will say it's even harder. Keep up your strength by being sure to take care YOU.

Hi every one. Need your Advice. First of all David you were right there are will be only 3 chemos.

Please advice if any one knows what would be the best option.Today the doctor adviced they will give full blast radiation. Options with radiation are either 3 chemos or 3 Panitumumab study drug. What our concern is that chemo is tested but this new drug is also very promising as it targets only the cancer cells not the healthy ones. This new drug has been in use for just over 2yrs.
Has any one used it? Thanks !

Panitumumab is never used by itself as a mono therapy. It is in the same family of drugs as already approved Erbitux, they are both monoclonal antibodies that interfere with a cells ability to reproduce. This is a good thing since cancer cells replicate much faster than normal cells, and slowing them down while OTHER treatments, like conventional chemo and radiation, can work more effectively. They both were used in colon cancer as their proving ground. This drug was introduced in 06 in colon, but the manufacturer is trying to expand sales into head and neck like BMS did with Erbitux. Hence the clinical trials.

i don't know about chemo, but i know radiation. I had 30 over 6 and a half weeks. He should eat as much as possible now. I lost 70 lbs, 25 lbs from surgery and 45 from radiation, and it wasn't good weight, it was all muscle.
He will more then likely end up on a peg feeding tube. It's very rare that anyone can make it through radiation of the mouth/neck area without using the peg tube. He will get sores on his tongue/cheek/throat. I would keep a close eye on him and make sure to talk to the doctor about peg tube and get all info for it before he needs it. I went 12 days without any nourishment before they put a picc line in me, and then 2 days later the peg cuz they couldn't get it in me before. Almost might be better to get the peg tube sooner rather then later but that's up to both of you.

Also i am wondering. How do they know for sure it's in the lymph nodes? For me they did a scan and saw that my lymph nodes were enlarged, but they didn't know for sure until they removed them and tested them. Did they biopsy a piece of his lymph nodes? or i guess maybe they are just assuming it's there due to the spread to the other locations.

I wish you both as smooth of a ride with this as possible, and hopefully he doesn't have all the side effects i had with mine.

He will need you there by his side for sure. I give full credit to me making it through radiation to my boyfriend who was there for me one hundred percent throughout my battle.

If you have any questions about anything going on with radiation, ask away and i will do my best to answer.

And i know this isn't very positive, but it's some things i wish someone would have told me before going through radiation. Really the only positive i can think of about radiation, is i am still alive today!

Here's a story out today (which later will be on the OCF news feed by lunch time) but since this thread is discussing this, I thought I useful to give you the information here first

http://www.internalmedicinenews.com...ced-head-and-neck-cancer/4eb8652e30.html

Thanks Brian! After researching and reading we decided to with Cisplatin Thanks to OCF.

@ bethers0808 - Doctors did lymph node biopsy and the scan. Doctors will be giving full blast radiation in the mouth,from the back of the neck, and lymph nodes. Lower dose on side of the tongue and other areas. Regarding peg tube doctors said they would use it. I am not sure when? from what i remember- they said after a week or so.
Thank you so much for your help.I have still so many questions to ask and tons of information to seek. But again reading stories on OCF gives me strength and courage.!

Roma, They seldom miss it, but make sure to tell the docs if any tinnitis (ringing in the ears) develops. Cisplatin an a small percentage of people, can cause permanent hearing deficit and even complete loss. The ringing in the ears is an early warning sign that you are one of them, and they can switch him the carboplatin which is the fall back position for people that cisplatin does this damage in.

I was told albeit after the fact that the ringing is a result of damage that has already occurred so you need to tell them ASAP to prevent further damage. Also this "ringing" as they call it really can manifest itself differently with each of us. I never heard a ringing, I would describe it more like a very faint electrical hum which was not constant. I was never tested pre Tx, only post and they told me that I have permanent loss in my high frequency range in both ears. Not bad enough to wear aids but I have trouble singling out a voice in a group of people; can't hear my cell ring that great; can't ever hear a cell phone ring on a TV show; trouble with female voices (now that can work out to a male's advantage!) and have trouble with emergency vehicles which has led to a few scary intersection moments!

ok.I did get sores in my mouth, and my neck the skin peeled and then was really red and gooey for a while. Also was nauseated and vomitted for the last 4 weeks of radiation. I didn't get my peg tube put in till 4 weeks in, and wish they would have put it in sooner.

I started developing sores in my mouth after the first week, but it isn't that way for everyone.

I also lost my voice the last 2 weeks and it came back 2 weeks after radiation ended. Lost hair in the radiated areas as well, but it's starting to grow back now.

If you want to know anything specific about radiation, ask away.

Hope everything goes as smoothly as possible!!