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

Hi & welcome! Sorry you guy's need to be here, but as you've discovered it's not a bad place to be & hopefully will continue to be helpful. I started out at 43, 225lb & 6'1", bottomed out at 176. He will lose a lot of weight. He will really have to work hard & stay focussed on keeping nutrition level up, up, up! I was hard headed & got pretty malnourished. That was just the low point & as Rob said in hindsight it has gone pretty fast. I am back up to around 195 or so & actually broke 200 a couple of weeks ago at the end of piggin' out in Hawaii for 2 weeks on vacation!!! It was a rough year, but doable & I'm in the best physical shape I've been in in 20 years!! I had Amofostine only 2 or 3 times, but it made me too sick & they stopped it. I seem to have ok saliva compared to last summer, but still not back to normal. It's more of an inconvenience than anything, you just adapt. The bottom line is you guy's have some work ahead, but just get through the treatment, keep your attitude right & live your live's to the fullest. I have 3 daughters, 14,10,& 9 & a beautiful wife - a lot to live for! Sounds like he does too! Stay in touch! Erik

Virginia, I sent you an email. Take care! Maureen

I too am like Virinia and my husband was diagnosed last week with Ca at base of his tongue. We also went undiagnosed for months and I feel so helpless now and blame myself for not seeing it sooner. The earlier biopsies were negative but when we got to the right ENT he knew what was wrong in a few minutes. My husband can't take anything but liguids and I am trying to get as much "good food " as I can in him but he has no desire to eat.We start chemo and radiation next week - he is not a candidate for surgery as he also has a weak heart. I cry away from him - I am his support and try to maintain an upbeat mood around him. I probably just need a good cry and then get on with it. We will not let cancer ruin our life - we have things to do and places to see!

Hello dryfly1,

Welcome to the club nobody wants to join!!! Glad you found us though. All of have had a good cry over this whole process. We are human beings with emotions. The trick is to stay on the upbeat and when feeling down post your concerns. It helps to get some feedback from those of us that have traveled the path ahead of you. Educating yourself about oral cancer will empower you to ask the right questions at the appointments. Write them down ahead of time, you never remember all at the doctors.

What type of Chemo & radiation is he going to have? What did they stage his cancer at?
Is he being treated at major comprensive cancer center? If not a second opinion at one would be in order. You want someone who sees alot of what he has. It is a most unforgiving diaease. Throw everything at it the first time.
Many of us were where he is now and survived. He can to. Remember to keep a positive attitude and take one day at a time. Measure his progress in weeks not days. There is light at the end of the tunnel and I hope you both get there soon.

Best Wishes, Danny Boy

Like Virginia & dryfly1, my brother was not diagnosed right away. Over a period of about 18 months, his doctor kept prescribing antibiotics for his swollen lymph node. Finally, the doctor did a biopsy and when it came back positive, he sent my brother to a comprehensive cancer center. He was diagnosed with tongue cancer, stage IV. That was over 3 years ago. My brother is back to work and has been cancer free since he ended treatment. I mention this because the next several months will be tough for you all, but people do survive, even stage IV people.

I am so glad I found this forum. I felt like there was little hope but was determined to maintain a positive attitude. We are going to a cancer treatment center about 60 miles one way as the local one does not have a good reputation as of yet. I feel confident of the doctors and have seen such kindness from all of our contacts so far.

Well we have started my husbands treatments and feel like we are controlling the cancer and it is not going to control us. He will have Carboplatin and Taxol weekly and daily radiation for 7-8 weeks. My husband has had a weight problem for years and was always told to lose weight so now he is being told " don't lose anymore weight this week or you may have to have a feeding tube" so this is a big adjustment for him. He is having a portacath inserted tomorrow as his veins are hard to find. I know we have a challenge ahead of us and pray we will stay strong enough to get through this.


'

My husband also was on Carboplatin and Taxol along with radiation. Don't be too put off by the idea of a feeding tube - it can be of great help. My husband also had the portacath and that also ended up being of great assistance.

Amazing what strength you can find when you need to. I certainly found that true.

Sending good thoughts your way. Keep us posted as treatment continues - there is some really good support available to you both here.

Best,
Anita

Virginia & dryfly, my dad was dx 5/05 with stage IV scc base of tounge, eppiglotis, back of throat and met to lymphs on both sides. He has not started treatment yet, probably next week. He will be having chemo (not sure which one yet) and rad every day for 6 weeks, sometimes 2x a day. I know what you mean and I feel for you. I never realized how much I really loved my dad until this came up. He was misdiagnosed as well by an ENT in the ER at our local hospital. They said he had acid reflux. He had been dealing with a very sore throat for 2 years but never had any medical coverage. Memorial Sloan Kettering in NYC had a free cancer screening a few months ago and he went and they told him he needed to be followed up, thats when the dx came. Thankfully, he got medical assistance from the hospital to be treated. I am doing whatever I can to help my dad but also trying to be support for my mom. My dad has always taken care of everyone so this is drastic for us. I cry when im away from him too. I have only been here for a few days and already I have found a wealth of information and support from these wonderful people. Keep your head up and stay strong. Time passes quickly.
Prayer and hugs
Sara

I am about 30 minutes new to this site. Today my dentist informed me he wanted to see me back in 2 weeks. He mentioned a possible biopsy if the gum tissue doesn't look any better. I guess I'm in the "stunded" stage, even though I've not been officially diagnosed. I will let you all know. I want to think positive but I somehow feel in my gut that this is real. From what I've read in some of these letters here sound like I'm in for one helluva ride but I won't be alone. Thank you for allowing me to introduce myself and for your good company. ALways, Roz

Hello Roz, Welcome! Please start a new post by pressing the "new topic" button just below. then you can see replies to your post easier and they won't get mixed up with the others.

Try not to be too stunned yet.