Husband is very leary of starting radiation, can some of you post what your situation was. How far into it did you start feeling the side effects and how bad were they? Were you still able to do your job. Did you still feel like doing activities outside the home and feel like socializing still? How bad was the pain and did the meds relieve it. How bad was the sore throat and mouth pain? Were you able to eat or did you need a Peg or feeding tube? Did you lose a lot of weight. He is having his vocal area and both sides of neck radiated. Did this effect your speech and was it long term? He has lost a lot of his voice already from the first surgery which removed the right vocal cord, it is a hoarse and whispy sounding with no volume. We still don't know how radiation will increase his survival rate for this rare cancer but hope to have answers on Monday before we start. Does added chemo make it much worse? Thanks so much!!!! This board has been so helpful already!!

the toughest part of my radiation was fatigue. i slept for at least 3 hours without dreams or feeling fatigue. i could drive and be fine, but once i laid down i was out. the worst part about rad treatment is you will fee worse after the treatment stops. for 3 days it was terrible, and then i started to feel like maybe i can live. tell your hubby it gets better, but it wi;; be hard.

Terri, there are a million stories from those of us who have already gone thru rads. Not everyone will respond the same way. A positive attitude will greatly help him to get thru this easier. The most important thing is good hydration and nutrition. The common link Ive seen with people who sail right thru it easily is those who have the best nutrition during treatment. He needs a minimum of 48+ oz water daily and 2500+ calories. If he would take in 60 oz of water and 3500 calories it would make a difference than if he only had 36 oz of water and 2000 calories. While fighting cancer, the body burns up calories at an amazing rate. It takes lots of energy to fight. If you want to check out others stories, check out the threads under currently in treatment, there you will find the answers to your questions. It wont be the easiest thing you have ever gone thru together but you guys can do this and will go on to be closer than ever.

Best wishes to you both!

Terri

[quote]Husband is very leary of starting radiation....We still don't know how radiation will increase his survival rate for this rare cancer but hope to have answers on Monday before we start.[/quote]

I'd be leary too if the doctors had put it that way. The important thing for your husband to remember is that the one and only survival rate that matters to him is his own and that is always either 100% or zero. In my case, without radiation, I was told it would be zero, so I was very motivated to tough it out regardless of what happened even though there was also zero guarantee that the radiation would work (and it didn't the first time around).

Point out to your husband that almost all of the posters here have had radiation and came through it, some of us twice even. My recommendation is to ask all of your very good questions in this post to the radiation oncologists
Keep the Faith
charm

There's a big variation in how folks respond to the radiation. My husband has a lot of flexibility in his work, and was able to work the radidation days (but not the chemo+radiation days) for all but the last week of therapy. The first three-four weeks weren't too bad, last half was pretty brutal: work, go to therapy, come home, drink a protein shake, go to sleep.

He hates pain mads, and was taking approximately a quarter of what most people take according his ENT. So, yes, he hurt, but part of that was his decision.

The important thing that Christine notes is the impact of nutrition and hydration on the process. You can't control everything, but you can keep on top of that (either orally or with a tube), and the pain meds, and the need for sleep. I kepts telling my husband that it was normal to feel exhausted, and to just go to bed and I would do the dishes. He got through the therapy without drama, and we owe that in great part to this forum - because I knew what to expect.

to this day, my wife lets me sleep whenever and for as long as i want. at first i felt guilty about it, but i guess cancer is a little different than the flu.

I had a pretty rough time with the radiation, but some posters have breezed right through it. I was fortunate in that I had a huge amount of sick leave and vacation time that I hadn't used, so I didn't have to worry about trying to work during the surgery and the treatments. I also kept in touch with work through email, so I was able to some work from home. (I was the director of a small community library before I retired.). When I went back to work I was able to go back gradually, a few days a week. I also had a great staff who kept me up on things and would bring me paperwork to work on at home. Radiation and chemo aren't fun, but as you can see, a lot of us got through it, and it likely saved our lives!

I was one of the lucky ones, as I got through it without a lot of side effects (so far). The dr�s told me to focus on eating and keeping hydrated, that was my priority and my wife made sure I was following those rules. During the first 3 weeks I was able to work, like others I could adjust my schedule and work from home. Most foods and fluids will taste terrible, including water. Find something he can tolerate and keep eating it, lots of Boast/Ensure. In my case eggs were on the menu everyday in some form, canned fruit and english muffins with lots of butter. Towards dinner time I didn�t want to eat, I tried to stock up earlier in the day. Take one day at a time; try not to count the days and with each treatment he is getting closer to the end state. Your husband can do it, he is lucky to have you as a caregiver.

Kevin had radiation 2x day for 6 weeks. He went at 8 and 3 each day. The first 3 weeks he did fine. Just as he was beginning to feel a little yucky he had a weeks break, which was planned from the beginning. The last 3 weeks didn't get hard until around the middle of week 5. After that it was VERY tough. He had a PEG but hated it so he pushed through several bottles of Ensure every day as well as water. He ate scrambled eggs every morning until he thought he was going to puke. (He has a hard time with eggs now!) He would take pain meds (Lortab) then quickly drink or eat.
The one thing that we had trouble with were the burns on the outside of his neck. We hadn't really been told how bad they would get. It was pretty awful the last couple days of tx and for about 10 days after. We followed instructions with dressing and bandaging and it healed nicely.
At the end it feels as though you can't do it anymore, but slowly it gets better. When you are a month out you can look back and see how far you have come. It's amazing how the body heals.
Kevin lost 54 pounds even with all the Ensure he drank and the eggs he ate. He lost about 15 of those after tx was over. Actually, probably more like 20. I was getting worried because, even though he was now eating food, he was still dropping weight. Like Christine said, it just sucks the weight off you. Kevin had extra weight that he could lose so he looks good now. So, all that to say the nutrition and water are SO important.
It would be great if you could do a signature so we can see what has happened.
We also had chemo first, then Erbitux along with the radiation.
Keep in touch with us. We are here for you. It is hard on us as caregivers to watch our loved ones suffer, but stay positive. I think that is also one of the most important things. Let them see confidence in your eyes, not fear. You can show your fear to others when he is sleeping!! Or write on here, we understand!
This is just a little of how it went for us. But, like others have said....Everyone reponds different.
Blessings to you both,
Kathy

HI there... I was very blessed and as far as I know from reading other's posts I'm a rare bird. I didn't start to feel the effects until week three or four (this is normal), at which point someone suggested rinsing with Manuka honey 4 times a day, which I started to do (along with the salt water, baking soda rinses. For me this held off the worst of the mouth sores and pain until two days before the end of rads. Then it was HELL for two weeks though each day I climbed a little more out of my hole.

Chemo made me nauseated for two days post treatment (this is also standard), but it was manageable. I was very lucky that was my only symptom. I had a PEG... didn't use it more than twice, I was easily nauseated by the formula, and basically after vomiting twice from using it I gave up. I ate as much as possible until it became too difficult then I would power chug 5 boost or ensure a day (I can empty a bottle with 13 gulps, and one stop to breath!!! - I counted it to take my mind off my discomfort!) The extra calorie ones have extra protein (only about one gram less than the extra protein) I would also add a vegan protein powder to one of my bottles so I got my extra protein to promote healing. I managed to lose only 16-20 lbs (I've since lost another 12 because I eat very few white flour products - very little bread, and no added sugar). Medication for the most part was useless except for the anti emetics, they helped with my nausea post chemo. Normally they give you three different kinds, two bottles with a two different pills only to be taken for a few days after treatment, the other for breakthrough nausea - I used this maybe three or four times.

Pain meds - basically I had codeine - liquid. I used that two or three times, but when I had real pain... the two weeks post rads, I used OXY 5mg, 4 times a day for about 5 days and then weened myself off them by the end of week two. The remaining nine days of the two weeks post treatment I only needed it at bed time. Oxy doesn't affect me the way it does most people I suspect, since it didn't really get rid of the pain for me, it just put me to sleep so I slept through it instead. There was a lot of fatigue (and drooling and mucous!), but I managed to drive myself to and from all of my treatment days - except for my two chemo sessions - as they kept me in over night for them (the standard is 3 chemos but a lot of the time people only get two because they run out of time as cisplatin only works in conjunction with radiation). And I walked my dog at least once a day. Stats say increasing your O2 during treatment, by even going out for a simple walk helps increase survival rates, and of course not smoking if your hubby is a smoker - I'm not.

Your hubby will need a good cream for his skin. Rads can fry you if you're fair skinned - I am olive skinned so I didn't redden or blister, but I did have a funky half face tan - basically from my nose down!

take care and good luck. Everyone has a different experience with this treatment, it's not easy but it is doable.