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).