Hi everyone. I'm new to this site. My husband has been diagnosed with stage IV tongue cancer with mets to both sides of neck T4n2cM0. He will be starting radiation twice daily and chemo with cisplatin and 5FU (a two week course treatment). I'm so scared. I'm trying to read up on everything I can to help him. I would appreciate any info from anyone with similar diagnosis. Thank you for all your help.

Virginia,

First and foremost, Welcome. Sorry we had to meet this way.

I am sure you are very scared and have a million questions. This is normal. You are in the right place. Please lean on us for anything you need.

I do (as I am sure many of us do) have a few questions.

1. Where is he being treated?
2. Is it a Comprehensive Cancer Care Center?
3. What treatment protocol have you guys decided on?
4. What can we do to help?

The journey has only begun. It seems long now but it will go quickly I promise. There will be highs and lows. We will be there for both.

You might want to talk to some folks out here that have taken the role of caregiver for their spouse. I have the most wonderful wife on the planet. She was pregnant and still found the time to help me and our four children.

God bless and keep you and your husband.

Robet, Christine, Alison, Robby, Tommy, Billy, And Scott Hamilton

Dear Virginia,

As others have said, welcome to the club that no one wants to join. I'm a caregiver to my husband too, so I know exactly how you feel right now. You are going to find a wealth of information on this site, and the people here are wonderful. It's going to give you the strength to get through this as well as be a support for your husband.

Radiation is not fun, but he will get through it! Since he hasn't started the radiation yet, I would encourage him to eat a lot of foods he really likes because he is more than likely going to lose a bit of weight before it's all said and done. My husband lost around 40 lbs and he did not need to lose weight.

Please know that we are here for you, and as you have more questions or concerns as treatment progresses, the people on this forum are here to be of support and help. I can't tell you how much they have helped me.

Take care,

Shelley

Thank you for the kind words. My husband is being treated at the University of Michigan comprehensive cancer care center. They are doing alot of research on oral head and neck cancer with chemo and radiation therapy for organ preservation with advanced cases. My husband is 47 years old and unfortunately, he was misdiagnosed a year ago with what was thought to be a simple infection in the neck at another hospital, but what was in reality his tongue cancer. I'm just so scared because it is so advanced, and I would like any information from others with stage IV who have gotten through this. I'm reading up alot about nutrition and vitamins in the hope that this will enhance his treatment plan. Anyway, I am grateful to this website and others who share their good thoughts and experiences to help us get through this. Thank you.

Virginia,

Good to hear he is at a CCC. U of M rocks! Very good place to go. Good choice. I was stage IV.
T1N2AM0. I chose the University Of Chicago. Two of my doctors came from U of M.

I opted not to get the Peg. I am not sorry I did. It was a struggle but it also helped to keep things moving in there.

Nutritionally, I lived on Ensure (4 to 5 a day), Matzo Ball Soup(not sure where my wife came up with the idea, I never had it before but it worked), Oatmeal,Scrambled and Fried Eggs, thats it. The doc told me not to take any other suppliments. I was 41 and fat (yea I can say it) I am now glad that I was cause I lost 47 lbs.

It was rough but I made it through. Dont get me wrong I dont ever want to do it again but I would for my family. You need a reason to fight. Tell him to bulk up now and get ready for a 12 round bout. He can, will, and must win.

Goos luck. Stay in touch. And of course god bless.

Robert

Dear Robert,
Thank you so much for your words of support. It really makes me feel better to know there are survivors out there. I fluctuate from being really hopeful to being really tearful. I have never prayed so much in my life. Doug got his port in today and I know I should be happy but I find myself crying. I should be happy as it seems like forever waiting for treatment to start, but I guess deep down I'm just afraid. And you know what? I'm an RN and you'd think that I'd be as tough as nails. I'm trying to be strong and happy in front of him as I know how important a positive attitude is but when I'm alone, I find myself so upset. Anyway, radiation starts tomorrow. They are going to be aggressive and he will not be receiving IMRT as they feel that the regular radiation will give him more of a chance at survival. He'll be receiving that twice a day for 5 and a half weeks. His neck is so hard and swollen bilaterally. Does this swelling and hardness resolve fairly quickly? I appreciate any info anyone can provide. Once again, thank you all, and thanks to this website.
Sincerely,
Virginia

Virginia
I tell you this before the going as a care giver gets rough, REMEMBER you are very important too in this fight, look after you also or all the whole pack of cards will come tumbling down around your ears, you both can do this but YOU have to look after BOTH of you..
Sunshine... love and hugs
Helen

Hello Virginia
MY husband also had stage IV base of tongue.
Best advice you will ever get is right here. Shelley is right , he needs to bulk up as much as possible as he will lose weight, lots of it.
My husband had a PEG which worked well at first, until his nausea was so bad he was fed thru his port.
Please try and keep him as hydrated as possible , you don`t want him to be hospitalized, no fun.
Also encourage him to stay with the Amifostine as long as possible, it seems to really help with protecting the salivary glands. This was the one thing my hubby regretted , he had intractable nausea and could only handle it for 5 treatments.
Pete is real easy to talk to and would be glad to talk to your husband. If he would like to or you would , email me and I will give you our phone #.
This is a very scarey time for you both, we know, we have been there. Just remeember this is not a death sentence, this bloody disease CAN be beat.
Let us know how you are doing , take the time to read prior posts, there is a wealth of information there.

Take Care
Marica

Dear Marica,
Thank you SO much for your e-mail. I'm not sure if Doug will be receiving amifostine. I know he will be getting some IV anti-nausea medicine drip prior to his cisplatin infusion. Also I will be giving him this medicine called kytril 3 days post chemo for nausea. I will be sure to tell him to drink and drink plenty of fluids. It's difficult for Doug to read anything about his illness or to do any research. I think his philosophy is what he doesn't know won't bother him and I'm totally the opposite. I guess that's why opposites attract. I just feel like I have to make sure he gets through this. Our kids are teenagers and I want him to see them grow up. I really really appreciate hearing from you. It gives me hope. I don't know if it's my imagination or what but I see people looking at us with pitiful eyes when they discuss my husband's case. He has already lost 20 pounds but thank God he is a big guy. Current weight is 220 lbs at 6ft 2in. I'm giving him all kinds of health shakes and he can only eat soft foods right now since he had all his teeth pulled for radiation. I'm so glad to hear Pete is doing great and I pray I'm fortunate to have the same happen. I will continue to read and find out what I can. Thank you thank you thank you and God Bless you and your family.
Sincerely,
Virginia

Virginia
Pete was the same , he would not come to the board , head in the sand worked just fine for him.I used to just print and leave lying around ( under his nose ) anything I thought he really needed to see.
People are strange when it comes to dealing with cancer, some do not do not know what to say others say too much!
I had one of my clients , I am a hairdresser , tell me , "He`s not going to make it , you know that don`t you ?"
Silly old woman , she did not have a clue what she was talking about. Boy did I have to bite my tongue , and I am NOT a diplomatic person by nature so it was very hard!
The Amifostine is for when he starts radiation and a lot of people have difficulty with it. I believe most Doc`s prescribe it now.
I also found the nurses in the cancer center were my best allies, they deal more personally with the patients and can answer most of your questions.
You can handle this Virginia but, please let you family and friends help carry the load for you . They need to feel useful too.
Take Care
Marica