Hi everyone, I've read a lot of posts on here and everyone of you are wonderful and very helpful. My husbands name is John and we have been married for 26 years and have 3 children, only one left at home and he is 19. John was diagnosed with Stage IV, T1, N2b, MO, primary base of tongue on 8/15/06. He had neck rt neck disection on 8/21, they removed his muscle and most of the tumor, but part of it was attached to his carotid artery, so the surgeon did not attempt to try and get it due to the possibility of a stroke. He is scheduled for 7 weeks of radiation with 3 tx of Chemo (Cisplatin). I've never really read anything about cancer until this. I feel like I am in the middle of a nightmare and can't wake up. Somedays I just feel numb and am beginning to like this feeling and that's scary to me. I have talked John into the PEG after reading the posts here to him, so thanks to all of you. He did not want "the feeding tube". He is scared as he was told he would lose his saliva glands and his sense of taste. They will be radiating both sides of his neck, along with the lymph nodes above his collar bone. I find that I cry at the drop of a hat, only broke down one time in front of him. I really am trying to be strong for him, but it is so hard. Everytime I look at him its hurts to know what he will have to go through. He has always been so strong and healthy and the one that took care of me and our children. See, I started crying when writing this. I am also worried about by son who is at home, should he join a support group or get counseling, he has always been so sensitive to everything. I am really looking forward to and need the support that is so evident here. Hope at the end of this I can also help someone in my shoes.

Welcome to this forum, Janine.

My husband was also Stage IV. He is three and a half years out from treatment and doing very well. The treatment is rough, to be sure, but your family can do this. You might be surprsed at how your son rises to the occasion. I certainly saw that with my two daughters who were of similar age during treatment.

Ask any question you have here. There are some very knowledgable and caring people on this site, as you have probably already discovered.

Best to you,
Anita

Janine,
When I was diagnosed, also with stage IV base of tongue in 2002, I had three kids in high school. Now, four years later, one is a senior in college, the second is a freshman, also at the University of Texas, and my son is a senior in high school. Although the radiation/chemo left me with the dry mouth, much of my sense of taste has returned and I enjoy eating all kinds of foods. I have enjoyed many trips and many good times with my children, other family members and friends since I recovered, and I got re-married in 2004. My golf game is better than ever and I can still handle myself in the courtroom in front of a jury, snow ski, hike in the mountains or do whatever I want to. Although I once believed that I would never see retirement, I am once again planning on it, albeit not working as hard as I used to.
I frankly don't know just how scared the kids were when I was diagnosed, but they handled it well, and, like most teenagers, were very concerned with their own lives, although they were very caring with me.
Fortunately, most of us recover and get back to life, if not life as we knew it before, still a good life.

Best of luck,
Danny G.

Thank you both for your messages, it is encouraging to see someone with the same stage diagnosis that many years out and doing well. I am so happy for the both of you. An additional thanks to you Danny for telling me that your sense of taste returned, I read that to my husband, as he is so concerned about never tasting food again. It made him feel better and gave him some hope. We go Tuesday for simulation and make arrangements for the PET, then he is to start radiation towards the end of the week. I'm sure I'll have plenty of questions and concerns after his treatment starts.

Hello Janine
I also had a husband with Stage IV base of tongue.
He is 3 years out of treatment and life is pretty much normal for us.
I can totally understand what you are feeling right now... I think "Sheer Terror" might describe it best. You can get through this Janine and we are here to help.
Pete`s salivary glands have been somewhat compromised but, he is now able to go without a water bottle for much longer periods as time goes on.
His taste buds don`t seem to have been damaged that much and he can eat pretty much anything that does not have to be chewed a lot. He would not listen when I told him he had to exercise his jaw... so trismus is an issue.
If your husband would like to talk to someone who has been through it let me know. Pete is real easy to talk to and would be happy to do it.

Take care
Marica

Janine-
I can relate to the crying. My husband (also Stage IV)had the surgery of the tumor on his tongue and lymph nodes removed on July 12th. Because the cancer escaped the lymph nodes he is getting weekly chemo (cisplatin), Erbitux, and also daily radiation. (started August 16th, last treatment September 29th) We have 6 children at home, the youngest is 3. I have found myself in tears at the grocery store, at the bank drive-up, when hanging out the laundry, taking out the garbage (David used to do that). David is doing well, though, better than I expected after reading stories on here. He has not had much nausea from the chemotherapy and his throat is just now starting to get sore. He has been using the feeding tube again for that past few days since he was losing too much weight. This site DOES help, and feels like a support system for me. Visit it whenever you have questions.

Hi Janine --

My husband Barry was diagnosed last year (June 21) with Stage IV tonsillar and base-of-tongue cancer, with spread to two lymph nodes. It was also like a nightmare, we were about to go on a long trip and Barry was (in his words) in great shape (he thought). He was treated at Johns Hopkins, his only surgery was a radical tonsillectomy to remove the primary, and then 7x chemotherapy treatments (carboplatin) concurrent with 33x radiation treatments, he also was given amifostine (Ethyol) to preserve salivary function. Thanks to the newest anti-nausea drugs like Anzemet, the chemo was (in his words) a "non-event" but the amifostine was very difficult to take. However it worked, he now has about 70-75% salivary function and this is continuing to improve as well.

He was given a PEG tube but never used it, he was cautioned by our ENT surgeon (herself a HNC survivor) to "try and swallow as much and as long as you can" -- and this proved good advice, again thanks to proactive and expert pain management he was able to eat throughout through he did lose weight (mostly right at end after a couple of infections). However he would have used the PEG if needed as "food is medicine" and it is vital to not neglect nutrition and hydration. Be sure to speak to a nutritionist at your hospital if you need advice on any issues.

Although your husband should be ready to use the PEG if needed as hydration and nutrition are critical to his well-being -- try to encourage him to at least swallow something to keep the muscles etc. working as best they can. Be sure, also, that he gets examined by a swallowing/speech therapist after treatment in case (as will probably be true) he will need some therapy in the form of exercises to restore function. Even though my husband ate throughout, he still had radiation-induced muscle weakness and damage, which resolved gradually after months of religiously doing his various exercises. He also used a TheraBite device throughout, to avoid trismus (restriced jaw opening). Ask your nurses about this -- or some other means of avoiding this common problem. The OCF web site has some good information on this.

The good news, your husband can get through this and come out the other end in good shape, although recovery will take time (patience and optimism needed!). My husband completed treatment Sept. 29, by early December he was able to go to a Christmas banquet and eat (and enjoy) his grilled salmon, in January we went to Mexico where he discovered that spicy foods were still a no-no (ouch!). We are just back from Australia, where he ate everything I did and especially enjoyed their meat pies. Barry never lost all his taste, because his radiation plan did not affect his outer oral tongue (and its taste buds) but it was greatly diminished and some things tasted weird (or were tasteless). Taste gradually returned and now about a year later he can eat (and taste) almost everything, and although he still avoids really spicy foods, this also continues to improve. The one thing is he has some "Sauce Bearnaise Syndrome" -- where one associates a certain food with bouts of nausea or other negative events -- and thus some foods he ate a lot of during treatment (such as cream soups) physically turn him off now. He never wants to see any more cream of broccoli, for example!

Of course the bottom line is that all Barry's tests and scans have shown a complete clinical response to the treatment, although of course the doctors will continue to monitor him. His was a human papilloma virus -16 cancer (he never smoked) and these seem to be more sensitive to treatment. So we are pretty much going on with our lives as before, and not looking over our shoulders all the time. Barry does need to regain some of the weight he lost, maybe now just 5 pounds or so, this also is a gradual thing.

The major advice is that you will have to really focus on learning all you can -- never be afraid to ask questions, and to keep asking until you get answers -- and at the same time provice emotional and physical support for your husband PLUS do everything else you normally do. This can be very stressful and exhausting, and if you can get help from friends and family, accept it! Your hospital may also have a social support person who can assist with issues such as prescriptions, transport etc. And come to this forum whenever you have a question or just need some moral support! We have been there...

Gail

Janine - Welcome to the forum. You and your husband and son have a rough ride ahead of you. Treatment for our type of cancer can be very tough. I too was a late stage IV. Get involved in the decision making. Keep your husband involved. He should be aksing tons of questions.

Get him a small tape recorder to take along to his appointments. You go with him too. Take your son once in while. Read this site - there are hundreds of pages of very good info here. Use the search function. Let your teenager be your researcher. Ask questions in this forum. There are no stupid questions about cancer.

Come here often. Have your husband come here too. And your son. You can do this. We did. We can help. Be strong, Tom

Dear Janine, Just want you to know that caregiving [or nursing or whatever you want to call helping a loved one face and fight cancer] has it's own special place in the universe. Every caregiver on this forum is sheding tears with you and sending you wishes for strength and courage. Stay with us and let us hold your hand as we hold each others. Amy

Hi Janine,

So much good information is already written in the above posts. I just wanted to say that, in our experience at least, during treatment you have to get used to the fact that there will be things happen that your doctors forgot to mention and that there are lots of relatively small things that can ultimately cause discomfort if left too long. For instance, it's important to ask about stool softeners/laxatives when starting the heavy pain meds because constipation can add unnecessary discomfort and anxiety at an already tense time.

Also, I found that doing a quick review on Friday morning of any new problems my husband was having ( for example, was his mouth particularly sore, was he having heartburn etc) and following up before noon on Friday with his doctor, saved both worry over the weekend and probably a few trips to the Emergency Room - a place you really want to avoid if you can when the radiation/chemo is in play and the immune system is compromised.

My John is only 9 months post treatment but much of his taste is back (it was very distorted for a few months) and today he went off on his first business trip to another city since becoming ill. A year ago we were really dreading the future and now we are more into enjoying each day and taking it as it comes.


Like many, I too was numb and shocked and extremely sad and worried about the effect it would have on our 11 yr old when the diagnosis came but once the treatment began, it was more about the practical aspects of getting through each day(hour-by-hour sometimes). Please post any questions you have as you go through this. This board was (and continues to be) a tremendous help to our entire family.

Mary