My husband was diagnosed with stage III SCC base of tongue left side with 2 lymph nodes on the left side. I don't pretend to understand much of this. He is doing radiation and chemo concomitantly. He started Jan 31st Monday. The chemo is 5FU and Cisplatin (sp?). Radiation 35 treatments. He has done 4 radiation treatments so far and was in the hospital until today when they finally let him come home.

They gave him the cisplatin Tuesday morning around 10am. By 11pm he was vomiting violently and did so through late Thursday. They gave him 4 different anti-nausea meds that didn't seem to do much other than give him a headache.

He just turned 62 in January. He is very angry because he doesn't smoke or drink, takes his vitamins, eats the right foods. He has headed all of the warnings on how to avoid this and he got it anyway.

He says that he feels so bad that he doesn't think he can make it through this physically. I am scared because we just got started and there is such a long road ahead. The chemo tx's are every 4 weeks. He will spend a week in the hospital each tx.

We have 2 boys that are 8 and 10. I am also in Law School.

I am scared and so is he and we are trying to do all the right things. But it seems like everytime we turn around there is something not going right. I brought him home from the hospital today and I have to keep him away from my son (8) because yesterday my son got sick and now has fever and coughing. It has made things even more difficult. I worry about my husband and my son and everything.

I am afraid that the pain is going to be so bad for him that he will give up. I can't make him better. I can be anywhere now and for no particular reason I just cry.

We have met survivors. It was a survivor who sent me here to this forum. Now I need a little help.

Help me hope please. I am so tired. I can hardly move sometimes but I get up everyday and I do what I need to. And at the end of the day I sometimes think that I can't make it.

I love my husband so much and it hurts to see him have to go through this. I know that I am not the one with the disease and I try to remember that when I feel like I have it so hard. But there are times when it seems nearest to unbearable.

I have many friends who are helping to prop me up but only a couple of them have dealt with cancer and none of them experienced both chemo and radiation. They either had one or the other.

I just don't know how to do this and I am afraid.

Thanks for having this forum. I cannot imagine that I am alone even though it sometimes feels like it.

Cindy

Cindy, welcome to the club no one wants to join. It is very common to have both chemo and radiation to treat oral cancer nowadays and that what your husband is going through is certainly familiar to most of us here. I had stage 4 tonsil cancer 3 years ago and after the intensive chemo (also cisplatin) and radiation, I have been in remission. You must fully support your husband and he needs very strong will power to overcome all the side effects brought about by the treatment. Your two sons need their parents to see them grow. I also have two sons and their presence has great incentive for me to fight the battle. If your husband feels depressed, losing hope then you need to talk to his doctors about it. There should be pain medicine to reduce his pain. If others can overcome all the hurdles, so can you and your husband.It is very normal for you to feel worried but you should think more positive and have trust in the advanced medical technology that will cure your husband.Getting cancer is not the end of our life. Don't ask why your husband is chosen. I don't smoke or drink in my entire life and have been conscious about my life habits too. I would think that it is just an act of chance that I become a cancer member. I have started my new normal already and learn to enjoy every moment with the ones I love. This forum is a right place for you to get support and ventilate.

Karen.

Hello Cindy,

This diaease ands it's treatment will be a rollor coaster ride on both you and your husband. Slow down and remember to take one day at a time. The treatment may seem long but believe me it does get better. There are many members of this forum who went through the same treatment and are here to talk about it. Your husband can beat this.
As far as the pain goes talk to your doctors and tell them you want proper medications to control his pain. That is a basic human right.
Remember to take time for yourself. You will be a much better caregiver if you are ok. You might want some meds for yourself to help with any depression that might come up.
My thoughts are with you both as you travel one rocky road.

Danny Boy

Cindy your hubby is going thru exactly what mine did . He also had intractable nausea, we found the best help he could get was from the suppositories, usually made especially for each individual at the small specialty pharmacies. At least that was where we aquired them, the larger chains did not do it.
Right now is a nightmare time for you and your family, are you getting any help with the day to day stuff? My daughter came home to live with us for 3 months and I could not have made it without her.
Please try and encourage him to keep his weight up, does he have a PEG or a port?
Is he taking amifostine? That was so Toxic for Pete that he finally had to give up on it, now he wishes he hadn`t because of the saliva issues. At the time though, we felt if the cancer did not kill him the Amifostine would.
Please fell free to private e mail me at any time , I know how you are feeling , I cried buckets , this is a demon of a disease but you can beat it.
Please take care of yourself.
Marica

Thanks for your replies. I read a little here last night about what to do for the mucus stuff and then I ran out to the drug store and got him a humidifier and some spray for his mouth. It is sometimes hard to know what he is feeling because he won't really tell me. He thinks that he is whining and he keeps telling me he is sorry.

He said this morning that he feels like he has been beaten in the stomach. I think that he might have a little fever. I am going to call the doctor today and try to get something to help him.

He is also not eating. What should I do? He refuses to eat and has had maybe a half a bowl of ice cream over the last 5 days. I am worried that his weakness is partly because of the lack of food. He does not have a PEG tube yet although we are aware of it and asume that he will need it at some point during this journey.

Most of the time I am positive and I keep telling him that we can make it through this. But there are times, like last night when it feels like we are drowning in a flood of water and I just don't know what to do.

What is amifostine? does it work? And do you remember what the medication was in the suppositories?

I read the welcome to this club that no one ever wants to join and I know what that means but I have to say gratefully that you are here. I was telling him last night that it was amazing to me how many people have the same problem. I had never even heard of SCC until he got it and now I see that it is more common that I could have ever imagined.

I have already found the messages here to be very very helpful and I am trying all that I can to make him as confortable as possible. It is frustrating though because I don't always know what to do.

Time for myself? What is that? I seem to function better when I am busy and doing things and when I slow down is when the emotions creep up on me. I feel selfish and guilty because I think about all of the things that I have to do and take care of and I know that it cannot compare to what he is experiencing.

My husband's name is Harry and our boys are DC and Dylan. If it weren't for the 3 of them I would have no reason to exist.

It was like everything was fine, even after he was diagnosed on Dec. 10/04, but Monday it was like life suddenly changed forever and I am still trying to deal with that.

Thanks for being here. I cannot imagine not being able to find someone who can help.

Cindy

Good morning Cindy,
The feelings you are expressing in your posts are so familiar. Several things for you to keep in mind. First, both you and your husband can do this. He needs to focus on getting some food and a lot of liquids in. Second, as Dan has said, take exactly one day at a time. If that is too hard take one hour at a time. Don't look into the future because we all seem to imagine the worst.
This is a battle that can be won. Over time you will likely find that there are many positives that will come from all of this. Try to look for those positives and rejoice in them. You are always welcome to post with questions, answers and just to rant if need be.

Cindy,

I'm glad you found this site -- I know you'll find a lot of support and help here. It's extremely important for your husband to get regular nutrition every day to help in the fight against this disease, and if it means getting a PEG tube sooner rather than later, by all means, I would advise it. I didn't have one myself, but I also remember the ordeal of forcing food down when it was excruciating to do so, and when everything tasted so terrible that I had no appetite. There are many people here who absolutely needed the PEG during (and sometimes after) radiation, and would urge him to get it if his nutrition is otherwise suffering.

It's good that you have friends close by who can help you as well. Don't be hesitant to take them up on any offers they may make to run errands, bring meals, or whatever, as you will need time and strength to handle the demands of the next several months. About a year and a half after I finished my cancer treatment, my husband suddenly developed a very serious illness that had him hospitalized for an extended period, and after that experience I concluded that in some respects, being the caregiver was more gut-wrenching than being the patient. Please take care of yourself too, as your husband will need you in ways that he probably has not before.

Cathy

Hey Cindy,
Welcome and boy do I know exactly what you are feeling. Dan and I lived thru it and so can you. I remember days when I didn't think I could continue...doing everything and most of all watching Dan suffer. My boys are 20 and 25 and they really didn't hang around too much...I think it was so hard for them to see their dad that sick. It was a first for them. Dan had a PEG and it was a lifesaver for him. We put Nutren 2.0 in it which had 500 calories a can. Dan has a higher stomach than some, so he filled up fast and couldn't take much in. He took Protonix for acid reflux and was on Oxycotin and a Duragesic Patch (started at 25 mg. and went up to 100 mg.). He also took anti-nausea meds and in the beginning had terrible bouts with constipation. We finally got meds that helped put that under control. It was a long, hard road but we relied heavily on God and friends to help us thru. I will keep you in my prayers for healing for your hubby and strength and courage for you as you face each day. I went and got meds for me to help cope...Xanax for anxiety and Ambien to sleep. I still take them occasionally when I get too upset or can't sleep. You might want to go that route. It helped me get thru.
Take care and God bless,
Debbie

He's only had 4 radiation treatments and he's not eating?!?! I was still going out to restaurants at that stage. I struggled with nausea as well - especially for the week following the Cisplatin. There are a variety of antiemetics (anti nausea meds) that he can get. Zofran is the one usually given with Cisplatin and it is usually administered through the IV at the same time as the chemo infusion and followed by a couple of pills a day at home. There are other new classes of antiemetics that work as well as Zofran. Rememeber that Zofran only is effective for 3-5 days at a time so other anti nausea drugs must be taken. If he can't hold anything down, compazine suppositories worked well for me.

He sounds like a candidate for a PEG tube to me. He must keep his nutrition up or this whole ordeal will last much longer. He must also drink 2-3 liters (4-6 12oz bottles) of water every day or risk kidney damage from the Cisplatin. Cisplatin can made food taste metallic and eventually his taste buds will get wierd for a while (they come back).

I didn't have F5U so I can't comment on that.

Don't get scared by everything you read here. Eveybody reacts differently to treatment and some have very little reaction to all of this stuff.

Talk to your nutritionist weekly and tell the oncologist immediately about the nausea issues. Smells and certain foods can exacerbate the nausea so ask the nutritionist about that as well. Keep a daily journal of food, water and med intake, reactions temperature, pain. etc.

Always have the radiation first prior to infusion if they can schedule it that way. Getting sick while on the table in a mask is not a pretty picture.

If he's really feeling like crap he is probably dehydrated and will need an IV infusion. Have that done at the infusion center rather than emergency - it's much faster and more comfortable.

If his fever goes above 100 degrees call the doctor or go to the ER.

25% of the people who get oral cancer never drank or smoked. HPV16 has also been implicated in oral cancer. Let it go - he needs to focus of getting through the treatment and recovery. He'll have enough to get pissed off about just doing that. All of the healthy lifestyle habits he has can only serve to make the cancer and risk of recurrence all the more treatable. If you are a religious person it's a good time to pray for God's healing, grace and comfort. If you are not we'll do the praying for you.

Do keep sick people away from him and disinfect everything critical area in the house such as kitchen, bathrooms and doorknobs.All patients have the right to adequate pain management - demand it. He may wish to consider anti-anxiety meds as well as anti-depressant medication (and maybe for you as well).

This is a long and difficult treatment and there will be many more twists and turns. A positive attitude now is essential for survival. Try to take it one day at a time. It is essential that he completes all of his treatment protocol on schedule.

Many of us here have gone through the same thing and survived quite nicely - it's no picnic but it's doable. It is very hard to watch a loved one go through this. My wife had a nervous breakdown and it didn't help that I wasn't a real happy camper but our marriage survived and is better than ever. Take care of yourself! Get enough rest and nutrition - have a diversion like school and the kids. Have friends, people in your church (if you go to one) and relative help share the load. Take some time off.

Gary,
Thank you for your input. They did give him the Zofran but it gave him a terrible headache so now he refuses to take it. He is now taking the compazine and seems to be doing ok. The doctor moved him from as needed on the compazine to 3 times a day mandatory. She also gave him an anti-depressant today. He already has mouth sores.

We listened to the doctors when they told us about the side affects and honestly we both thought that he would still be relatively ok for a week or 2. Oh contrare mon ami.

His chemo is a week in hospital. It made this life change a very drastic one. We woke up this past Monday morning and everything was as normal as it has always been and by the end of the day, when I returned home alone, it was painfully clear that everything was changed forever.

It is very interesting to me how every cancer is so personal. What I mean is that the treatments (qty. / drugs / rad.) seem to vary from person to person a lot.

My husband is a strong guy so it is difficult to get the truth out of him about how he feels. I only really know this is bad because he can't do anything except lay in bed.

I did get him to finally eat today and he drank 2 of those Boost drinks. He likes them which makes it much easier to get him to drink them.

I have not noticed fever yet but I am told it will come.

Well I have spent the day entertaining family. It was good for him, but I have cleaned and done all kinds of other things and now it is 12:30am and I finally can sit down and study for class tomorrow.

Thanks again to everyone here. I cannot imagine how lost I would be right now if it weren't for this place.

Cindy