One quick question. As I look thru the many topic threads, it seems like most folks have radiation treatments along with chemo. Has anyone had rdaiation only? What are the possible side effects? Had my first treatment yesterday.

David,

My husband, Michael, had radiation only. He started radiation on 10/23/06 and ended on 12/05/06. He had a stage 1 SCC at the base of the tongue with a couple of tiny spots on a couple lymph nodes. He saw two local oncologists and two local ENTs and was seen for a second opinion at MD Anderson. They all agreed he just need radiation. The first week or two the cancer lesion still hurt. He said it felt like someone stabbing his tongue with a hunting knife. Then the cancer lesion stopped hurting. That was a real positive. Losing his taste buds was the hardest (I think) thing for him. I think he kept thinking that there had to be something to stop that sensation. Even now nothing much tastes - he says he gets a hint of taste sometimes - green peppers, cinnamon a few other foods. He eats fairly small meals, but last Friday night he pretty much ate a whole steak dinner and Sat he ate a whole catfish dinner.

Early on when the cancer still really hurt and then again later when his throat really hurt from the radiation he was on some heavy duty pain meds, morphine. They caused serious constipation which was pretty painful in addition to the other problems. Mid treatment he got off of the heavy pain pills and at the end again he got off of them as soon as he could.


His throat was very sore and hurt, but he was able to keep eating throughout the radiation without a tube although it was discussed. The doctor did prescribe some steroids at one point to decrease the swelling somewhat so he could keep eating. He was only on the steroids short term. His throat pretty much stopped hurting two or three weeks post radiation.

He was very tired and grumpy following the radiation treatments - especially the last couple weeks of the twice per day treatments. Even though he is still tired he can

David,

I had both but other than some nausea the main culprit is the rad Tx.

If you haven't read my post that I wrote a month or so ago and have reposted it resently re my Tx let me know and I'll repost it for you.

Hi David-
I had surgery + radiation only. I think I had XRT, not IMRT so maybe my experience was different, but I'll tell you how it went.
Around week 2 I lost my taste buds but felt fine(except being tired). Around week 3 it started hurting more and the vicodin I was taking didn't cut it. They experimented with morphine to find the right dose which made me throw up alot. Then they put my on a arm patch of fentanyl which worked well to control the pain so I could keep eating and drinking. I only eat liquids(mostly ensure and carnation instant breakfast). Around week 3 I developed a bad tongue ulcer(due to not putting the cotton pads in the right place to protect my tongue. That's why I stopped eating solids, becuase my tongue hurt too much and then even with the pain meds I would bite it accidentally.
I could drive myself before I got on the fentanyl which was nice. About halfway through you develop mucositis, which is where you get mouth sores and lots of mucus as your body tries to fight off the radiation. Have lots of tissues around for spitting out loogies! As treatment went on, I didn't like swallowing and I wasn't drinking enough water so I would periodically go in and get fluids in an IV. The nurses keep a good eye out for that.
As for the constipation, the nurses should give you a list of daily stool softeners or laxatives so it doesn't become a problem.

Sigh....it sucks but you will get through it. Today is my last day "hooray" which means then next few days will probably be really lousy.
So, check in often when you need support. I found that some days I just needed to hear someone else say that they had been through it and are now fine.
Melissa

David,

I also had surgery and radiation without chemo (albeit many years ago). The radiation was XRT -- IMRT wasn't even an option back then. The first 2-3 weeks were tolerable, with some slight changes in taste buds and increasing sensitivity in my mouth. After that, things started to go downhill pretty rapidly for me, with mucositis, swallowing difficulties, hacking up "junk", and increasing amounts of fatigue. The one thing I really didn't have was nausea -- probably because I wasn't on very heavy duty pain medication and wasn't having chemo.

For the last few weeks of radiation and several weeks thereafter, I couldn't handle solid food -- diet basically consisted of Carnation Instant Breakfast with other things blended in, as well as baby food, creamy cereals, yogurt, ice cream, lukewarm soup, etc.

As you can see from many of the posts here, radiation effects continue on for weeks (or months) after the last treatment, so you need to be prepared for the fact that your body can't bounce right back. However, there are plenty of people here who can give you some extra support if you hit any bumps in the road along the way.

Cathy

I am not sure that I agree with David on this one, I think that chemo is the main factor causing nausea during treatment.

Ionizing radiation is not to be confused with nuclear radiation.

Besides with all of the heavy duty pain meds, constipation (which by itself can cause major nausea) and dehydration, how can you tell?

I do know this I was always nauseated after chemo and never during or immediately after RT.

Melissa,
lower your expections and it might actually be a little easier for you. Most of us continued to slide downhill some weeks post Tx as radiation is the "gift that keeps on giving". It will get better though I promise.

The general rule is one month of recovery for each week of RT. Translated: 5 weeks of RT = 5 months recovery time.

I really, really do appreciate everyone's honest input. This certainly is not the time for "sugar coating" the issue. You always hear that everyone reacts differently, but I'm sure there is much truth in everything that has been posted. Thanks again for your input and support.

I also had no chemo, just surgery and XRT. I had some mild nausea, but usually from trying to brush my teeth. Having a PEG meant I didn't have to swallow my nutrition (but I did swallow plenty of water and all my meds). My experience pretty much matched the experiences posted above.

I was glad I didn't have to endure chemo at the same time as the radiation!

I had Stage 2 tonsil cancer and only had radiation without any surgery. This treatment is based on the staging of the cancer in the tonsil. I did not have any lymph nodes that appeared to be affected but did radiation from the chest to the top of the tonsil to be safe since there was a 50% chance that the lymph nodes may have been effected. I am cancer free 3 years latter and the docs say I beat this one.

David,
I haven't started yet; however, I'll be getting only radiation. 5 weeks (25 treatments) of IMRT focusing on the right tonsil area and all draining lymph. Then I'll receive 2 weeks of radiation focused on just the tonsil area; 35 treatments total during 7 weeks. I'll get an injection of Ethyol about 30 minutes before treatment to protect salivary glands. The decision to not give me Chemo was based on the Stage. The medical oncologist also assumed that the tumor is going to test positive for HPV (I have no cancer risk factors). Even though the treatment would be the same, we sent the tumor to be tested (curiosity).

Gary, you are right, here it is two days past my last day of radiation and I feel the worst ever. In fact, I just decided to up my drugs and spend the weekend sleeping. I told my boss I would be back at work after two weeks but guess that will not happen!

I had a lot of nausea, I found that the first drug they gave me did not work at all, then they gave me a more expensive one that is only for cancer patients and it worked great.
Melissa

Melissa,
you young kids have such optomism - I love it - hold onto that thought!

The conventional wisdom however, dictates one month of recovery for every week of radiation. I fought it (and was in good health going into it) but found that the foregoing formula was pretty accurate.

We all respond differently to treatment and a relative few here have gone back to work early (and some wishing they hadn't). There are many variables involved, including, but not limited to, your immune system status (you are at great risk in the early post Tx, from colds and viruses that can quickly morph to pneumonia which can be life threatening), secondary infection issues, thrush, pain levels/meds, eating, drinking, swallowing and even speaking, not to mention emotional, like depression, etc.

It's very hard to predict and it's better to roll with it than set unreasonable expectations for yourself that will ultimately frustrate you and make you feel worse about an already bad situation.

Melissa
I did not miss a day of work. I have a desk job and I left early about 2PM every day for my treatment and I was tired. But to my surprise I did not miss any work through my radiation only treatments. I also noticed even though I was tired I felt better than on weekends laying around I seem to feel the pain more.

I was diagnosed with stage two scc in my left tonsil on 2-8-06. I had surgery to remove the tumor and my tonsils in March, followed by 35 IMRT treatments. I did not have a PEG tube.

There was quite a bit of nausea from both the radiation and from the pain meds. I experienced a couple of yeast infections during treatment. I lost about 1/3 of my body weight due to the inability to eat. I had very little energy during the treatments.

That being said, the worst part was probably the yeast infections. They were very painful.

Hunger was almost as bad as the pain. I was not offered a PEG. If you have not been offered one, inquire. There is no way I would have tried to go without it, if I had know how bad it was.

I started back to work in October but took most of November and December off.

I am now working full time at my day job and teaching at a university at night. I am able to eat most things (but I don't really like to eat now) but there is not much taste to most foods.

I still have a lot of difficulty sleeping due to the dry mouth, but I do manage to get in a nap here in there.

Bottom line is I am beating the cancer, it is not beating me. We are survivors!

Keep your chin up and fight harder than you have ever fought before!

Hi David-
I just asked the doctor and it turns out I had IMRT not XRT. So maybe that makes a difference in talking about how my experience was compared to yours. One thing I noticed when I joined this board is that everyone is very informed about their cancer and I needed to learn more about mine. I always assumed I had XRT becuase there was another room that said "IMRT" and I didn't go in that room.
It's about 1 week now since the treatments stopped and I am exactly the same. The doctor said it would be 10 days to 2 weeks to see any improvement. So I guess that is something to be prepared for(I believe everyone told me this but I just didn't get it), don't go telling your boss you will be back at work in two weeks like I did
At least I have the pain under control now with 2 fentanyl patches and then the fentanyl lollipops before each meal. That makes it so I can get down enough food and water. Then in between I feel ok. Watching alot of TV and browsing the internet. From the neck down there is nothing wrong with me!
Melissa

Melissa,

Week 3 post rad was the turning point for me. I stepped out of that damn tunnel for good. I saw a positive difference in the way I felt and my eating habits. I started to drink and eat 3000 cals a day. My energy slowly returned but some days I would wake up just as tired as before my energy came back so don't worry if it happens to you. It happens to all of us for a few months.

I am now almost 6 months post and I am almost back to pre Tx. Taste = 8 out of 10 and dry mouth = 7 out of a normal 10. It seems like this journey has taken forever though.

Thanks David. I feel like every day I get up and expect to be at least a little better but I'm not which is frustrating. But I guess it has only been a week. I have heard alot of people say 3 was the turning point. I eat about 1700 calories a day which is enough to maintain my weight. I didn't lose that much during radiation plus I had "baby weight" to begin with so I'm actually at a healthy weight now. Was it hard to go back to eating solids? I've been on liquids only for the past 6 weeks becuase of my tongue ulcer and then the sore throat. I'm hoping once my mouth feels better I can jump back into eating real food, even if it tastes like nothing.
Melissa

Melissa,

Baby weight at 32? Hummm, you must have some good drugs. LOL

You may want to talk to your docs re increasing your caloric intake. Your body is seriously trying to heal itself and it needs more nutrition and calories to help that process. Mine wanted me to exceed 3000 balanced cals a day for a month and I did my best. I didn't gain any weight either.

Most of us not on feeding tubes are away from solids at least 6 weeks. Six weeks was the same for me. I was really determined to eat solids ASA I could. I started with mashed potatoes; then fruit cocktail; then mac n cheese; then canned weiners and spagetti (you can see how determined I was). Everything was small portions. I really didn't enjoy anything other than the fact that I was eating solids again but that soon wears off. Since your taste is crappy you really have to force feed yourself. Order kids meals for the next 3 months or so. I found sweets, like pancakes, french toast, etc with plenty of surup easier to get down.

Don't set unrealistic goals and you won't be disappointed. Your body has been put though hell in 6 short weeks and it will take time to heal itself. Don't expect every day to be better than the day before...it won't. Don't even expect each week to be better. Think in terms of months. I felt after 4 months I could post my progress, then I posted after 5 months because I had improved. Now after 6 months, I'm about the same as 5 months so I won't be posting. You'll see what I'm talking about as time passes.

Hang in there, it will get better.