I am new to this board. My husband was diagnosed with cancer on June 28th, a small tumor on his tongue and it went to the lymph nodes on one side of his neck. He had surgery on July 12th, to remove the tumor on his tongue and 32 lymph nodes (2 had cancer in, 1 big one let cancer cells escape) He now faces 6 weeks of a clinical drug and chemotherapy once a week, and radiation 5 days a week. He starts the clinical drug tomorrow. It has shown promise in stopping future tumor growth but it also tends to intensify the radiation and chemotherapy side effects. ( He is scared of what he will have to endure, he has already been through so much. It was the hardest thing in the world for me to see him in such pain after his surgery, am I going to have to watch him suffer more? He has a feeding tube but is eating well at this point, still can't eat chunky meat or lumpy things. I know the feeding tube will come in handy when he can't eat due to a raw, sore throat with the radiation. They don't want him to lose weight, but he has already lost a total of 20 pounds. I started him on Boost and Ensure yesterday. I would love ideas on how to boost his immune stystem during all this. I am doing as much research as I can with 6 children at home. Will he not want to be around his little ones when he is feeling his worst? Our youngest is 3 and can't understand all that is going on. We also have two adult children who have been a tremendous help.

Welcome. It's a shame we have to meet this way, but you have entered a great community of information and caring and support. What chemotherapy drug(s) is your husband getting? There is a lot of information on side effects in the Treatment section here. My husband is on day 15 of 33 radiation treatments and will have a few more chemo treatments of Erbitux and one more of Cisplatin. It is great that yours has a feeding tube. Mine thought he could tough it out but is getting one on Friday. The radiation effects have kicked in. He says his throat hurts more now than it did with the tonsillectomy and that was hell, so I can only imagine what this is.
You do have a full plate with your kids and your husband. It will be a life-enhancing experience for the kids--especially as they help you care for their dad.
Visit this site often; read and ask questions. We are all here for each other.

Joyce

There's really not much you can do to boost the immune system (in spite of what GNC might claim), the combination of chemo and radiation will clobber it for a while. Just make sure not to take unneccesary risks, like exposure to colds and/or flu, public places, (especially sick children), keeping your kitchen and bathrooms thoroughly disinfected, wash your hands frequently. If you have volunteer drivers, make sure that sick people haven't recently been in the vehicle he is traveling in. My wife also opened doors for me so I didn't have to touch any door handles.

He shouldn't have had to suffer. Adequate pain management is a basic patient right - demand it. The MO will typically manage all of the meds. Also clear with him first, any OTC meds you might be adding.

I don't blame him for being scared, only an alien wouldn't be. Many say that surgery was a walk in the park compared to radiation. The general rule is 1 month of recovery for each week of radiation. I didn't believe that at first but I'm a beliver now. I was on anti-anxiety meds the entire time I was in treatment - they really helped. The treatment can really kick your ass so anticipate that- roll with it as best you can. Keep focused that "this too shall pass".

Most chemo drugs to date are used as an adjunct and performance enhancer for the radiation (like Cisplatin or Carboplatin). Chemo by itself has not yet proven to be efficacious as a single treamtent modality for H&N cancer. They have come a long way with anti-nausea (emetic) meds.

Dropping 20 lbs., before he has even started radiation, is not good unless he was really overweight to begin with (and even then the flags should be going up). He should be having weekly meetings with a nutritionist as part of his medical team. Consider Carnation Instant Breakfast as well. Many have had superior results with products like Jevity. If you can get a presciption for it (like Jevity) the cost may be reduced or eliminated depending on your health plan. OTC things like Ensure or Booth they won't cover. Even with a PEG tube he should try to continue to take food and drink orally. The pain can be managed with "breakthrough pain" meds taken prior and/or topical "swish and spit" compounds like "Pink Magic". It is crucial to stay hydrated during chemo especially - 2-3 liters every day is what is recommended.

Keep a daily log of meds taken, food and drink consumption, anything unsual, and take his temperature at least twice daily. If his temperature goes above 100.5 degrees, he needs to see a doctor immediately. If he needs rehydration, a faster and easier route is to have it done in infusion (assuming that they are open when you need it), rather than the ER. They can infuse much more rapidly in infusion and it's a 1/2 hour vs 4 hours in the ER, not to mention the long waits and potential dangerous exposures in the ER waiting room.
Be sure that you take good notes and follow all of the doctors orders and presciption warnings and precaution carefully.

Stay in close contact with the MO about any problems that develop. I anticipated many of the problems ahead of time and had my own "pharmacy" stocked and ready to go (this way I didn't need to suffer over the weekend or spend time in the ER). A variety of pain meds, Diflucan (for thrush), Anti-acids - industrial strength (because chemo does a number on the stomach lining), Constipation remedies (because of the pain meds), decongestants, etc. There were more -this is just a basic list.

We all respond differently to treamtent so don't focus on just the horror stories you read here or elsewhere. Some here drove themselves to treatment every day and continued working (although that was a very small percentage).

Many of us survived chemo and radiation and are just fine and are leading normal, productive lives today.

He just needs to take it one day at a time and keep focused on the "now" and not the immediate future.

My husband will be getting Erbitux, but his will be free as he is part of a clinical trial. We don't know yet what kind of chemo- he will be randomized and treated with either Cisplatin or a different chemo drug, starts with a "D", I'll let you know after tomorrow, when we find out. I'm glad David already had the feeding tube, after reading some things on here. He lost 10 lbs in the hospital after surgery, but another 9 since he came home, and thats not good. He has been eating regular food for 1 1/2 weeks but now I am supplementing with Ensure and Boost and making him eat more often and yes, more fattening things.
Tomorrow he starts the Erbitux alone, one week later chemo and radiation. I am not reading some of this aloud to him because I don't like him to worry more than he already is. He doesn't mess with computers and I am doing all the research because I want to take care of him as best I can. Thank you for your replies.

About five days after his first Erbitux, you can expect an "acne-like rash" to begin to appear on his face. This is a good sign. The docs will be happy when this side effect appears and say it's a sign that the Erbitux is working. Unlike acne, these "pimples" will pop very easily. Our chemo technicians first recommended moisturizer to make the rash less red. Then our medical oncologist (MO, in forum shorthand) gave Tom a cream used for burn victims and it seems to help more. Another caregiver that posts uses hydrocortisone cream on her husband's Erbitux rash.

Gary's advice is excellent all around. Other posts here will give you an idea of what might happen, but everyone reacts differently, so don't let the experiences scare you. I told you about the rash, and your docs will too, because I think it is a sure thing with Erbitux.

Do a search for "Erbitux" on this forum. You'll see posts from ZendaT who I believe participated in a trial similar to the one your husband will be in.

Like you, I don't read all the stories out loud.

Yesterday my husband had his first dose of Erbitux. Next Wednesday they start him on Cisplatin (that is the arm of the clinical trial he ended up being randomized into, they are testing which type of chemotherapy drug works best with Erbitux for this kind of cancer)along with the Erbitux once a week for 6 weeks, followed directly by radiation on those days and radiation alone for the other days of the 6 weeks (except weekends) The oncologist prescribed two different creams for the Erbitux rash, but a nurse also suggested Head and Shoulders on the face and back, patients have found that helps. The doctor also prescribed 4 different anti-nausea drugs- isn't that alot of drugs??? I am not clear on which he is to take when yet, three of them say 2-4 hours after chemo and as needed, one is for breakthrough nausea. I will have to ask them when we get there next week- Do I start 2-4 hours after chemo, or every 2-4 hours after chemo? How soon does the nausea normally kick in? Right away, shortly after, the next day?? Augh!! I was a basket case after being on here reading way too long yesterday and so nervous about everything David will experience. I am so torn between caring for children and caring for my husband. I feel as if I am neglecting the children! The 3-year-old especially, but my 6 year old too as she is in the midst of learning to read and needs my time. (we homeschool, too) Can caregivers crack?????

Mom to Many,

My heart goes out to you girl.

First I just want you to know to take one thing and one day at a time. It is way to much to try and take it ALL in at once.

Yes, Caregivers can crack that is why it is so important to take care of self as well. If you can get some extra help from some one, take it!

As we all know the Mothers are the Center of the home. So take time for yourself, then everything else will fall into place. Take a deep breath and take one step at a time.

We are here for you.
Diane

Dear Mom to Many,
Your husband is on a very similar protocol as mine (only mine is not in a trial). Four anti-nausea drugs may sound like a lot, but as you are now learning, all nausea is not the same. It is confusing at first because it's all new, just like reading is to your little one. She won't learn all the words in a day so you shouldn't expect to learn this all at once.

Ask the oncology nurses/technicians to give you a detailed schedule--a calendar with the dates and types of chemo, and when he needs to take which drugs. Ours did this and it helped tremendously. We have found that there is little nausea with Erbitux, but there is more with Cisplatin, so there may be drugs he should take after the Cisplatin and different ones after the Erbitux. When in doubt, ask. Did they give you a contact phone number and an after-hours number? Don't be afraid to use those numbers and there are no dumb questions. Also, nausea may not always be that "I might be sick" feeling. Tom had acid reflux/heartburn and the technicians called that nausea.

Thanks for passing on the tip about Head & Shoulders for the rash. We'll try that. We find that the rash is the worst the two days after the Erbitux, then it starts to get better just in time for the next treatment! Could you share the names of the other creams they prescribed?

Hang in there! It is overwhelming, but you'll get into a routine with all of this new stuff--and soon it won't be new anymore. Don't try to remember all you've read here, just ask questions as you need to.

Joyce

That's not a lot of anti nausea drugs. You will use all four at different times. Some are only good for several days at a time, like Zofran. I would also recommend compazine suppositories as a back up - you can't throw them up.

I would ask for a second opinion on the "Head and Shoulders" - that stuff's pretty brutal.

The manufacturers labeling says nothing using it See: http://www.fda.gov/CDER/consumerinfo/druginfo/Erbitux.htm

Thank you all for your replies.
The lotions prescribed for the Erbitux acne is
Del-Trac @% lotion to apply at bedtime
Clindagel Topical Gel 1% to apply to skin am and pm.
I'm trying to take this all one day at a time, it's difficult though. I find myself crying one minute, happy to be holding my husband's hand the next. I think of how my heart just ached with him in the hospital for 11 days after surgery and how I cried most of the first night because I couldn't stand to leave him at the hospital in such pain. In all our years of marriage the only times we were apart were when I was in the hospital after a baby was born. Now, I want to be with him every minute but the kids need me too. I will be visiting this site often, thank you all for being there.