Hi, I'm glad I found this place. My name is Mary, and I just had surgery for a recurrence, 11 years after the first time. The first time it was all surgical, neck dissection, salivary gland removal, no rad or chemo. This time, it was more aggressive and extensive, and it looks like radiation will happen, on the floor of my mouth and part of the tongue.
I don't know what to expect, won't meet my radiation oncologist for nearly a week. How bad is this gonna be?

thanks for any honest advice or input, I am trying to prepare myself for this mentally.

Mary, welcome. I'm sorry to hear you have to battle the beast again, but this is the right place to get your questions answered.

The radiation can and likely will be rough. For me, it was worse than the 17 hours of surgery I had. I think a lot of that has to do with the time. Surgery is one day, and then you start feeling better almost immediately. Radiation reverses that, you start out O.K., and then get sicker and sicker. Even after it ends, you keep going downhill for a couple of weeks after treatment ends.

A few suggestions; Nutrition, hydration and pain management...deal with each one of these things every day, and do it effectively.

A PEG or a nasal tube helps with the nutrition. Your throat will likely be too sore to swallow and you wont taste anything anyway.

Drink LOTS of water. If you get dehydrated you will be sick, very quickly. I think you need to try and drink it as opposed to using the PEG, just to maintain your swallowing.

Pain needs to be managed aggresively. I didn't use morphine post surgery, and I had a lot of surgery. I did use it for a log time during radiation, and for quite a while after. Don't be afraid to ask your doctor for the pain meds you need.

Lastly, keep coming back here. We've all been there, and we'll all be there for you to lean on
Wayne

Mary,

I posted this response last week to the same question from 2 different people. It also inculdes remarks re chemo which you have not said you will be getting. I hope this may help you in your journey through the dark tunnel. It will be tough BUT YOU WILL EMERGE.


Before I start, they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Do not hesitate to ask any questions at all.

Mary, when you think you have reached the end of your rope; tie a knot and hang on...... All will be well....
Darrell

Mary,

Four years ago, I was about to begin my radiation treatments. Thinking back, the toughest part for me was the mask they used to hold my head steady during treatments... I'm claustrophobic, so the darned thing kinda freaked me out.

After several uncomfortable treatments, I noticed that the technicians had a boombox sitting quietly in a corner of the treatment room. I asked if they would turn it on, tune into my favorite classic rock station, and crank it up. They did, and I finally relaxed.

One day, I heard the doctor giving the techs some grief about playing the radio with a patient in the room. I let him know that the music was the only thing that was keeping me flat on the table. Apparently, they didn't cover the calming effect of rock music in med school, but he relented.

Seven weeks of radiation wasn't easy. Recovery from the treatments was slow. But today, my taste buds are back, the dry mouth is gone (I credit hyperbaric oxygen treatments), and life is good. Not the same, but good nonetheless.

Keep a positive attitude. Live well, and laugh often. Listen to some music. Fight through the hard stuff. You've got a lot of good things to look forward to.

Ken