Posted By: BuffaloFan Side effects from radation - 04-12-2012 02:28 PM
I am almost done with my first full week of radiation and I was wondering when will if (or if I will) start feeling the effects?
Posted By: terrib Re: Side effects from radation - 04-12-2012 03:02 PM
My husband just finished last Wednesday with radiation and chemo. His first two weeks were very uneventful, just a little red on his neck, no pain. The third week he had the PEG and port put in which put him down from the surgeries, painful sleeping, better in recliner. The fourth week was pretty good, still eating out. Sore throat but meds kept the pain under control. Last 2 1/2 weeks and 1 week post radiation no eating by mouth, dependent on tube 100 percent. The smell and thought of food is totally nauseating for him, nothing tastes like it should. He would love a cold glass of ice water but water taste like salt water. He was determined not to have the PEG but is very thankful he has. Lost 20 pounds in treatment and still losing a little. Did you opt for the PEG? The worst has been the secretions from having his throat get the radiation, constant gunk he has to bring up and spit, keeps him up at night. Luckily just a few mouth sores and salt and soda water take care of that. Hang in there, surprising the weeks go by especailly fast if you keep busy. He definitely feels better when he is busy and working or socializing with friends, helps keep his mind off things.
Posted By: BuffaloFan Re: Side effects from radation - 04-12-2012 04:24 PM
I did not have a choice on the PEG because I would not have been able to eat after the surgery due to the partial glossectomy. Since being out of the hospital I have not used it except for the first few weeks. I still have it due to they (DRs) expect that I will rely on it during treatment. As long as I can swallow and the pain is minimum I want to continue with what I can eat. I have lost only 5 pounds and that is on a strict diet I was put on. Unfortunately I cannot work at this time due to my job request speaking almost the full 8 hours of work (Phone Software Support). I have taken up playing poker online and started writing a short story.
Posted By: David2 Re: Side effects from radation - 04-12-2012 04:25 PM
BF - remember that each of us is different. So there's really no way to predict with certainty what you'll experience. I recommend you do a search for various terms - radiation, side effects, etc. and you'll find a wealth of input from many OCF members.

I think for many of us things started to tick up side effect wise toward the end of the second week. I had a ton of mouth sores, heavy mucositis, burned skin and plenty of pain. Also crushing fatigue. I did not get a PEG and wished by the end of the time that I had. So if you haven't done so and are still considering it, please consider it some more!

As your symptoms increase to whatever degree, continue to ask specific questions - both of your medical team and here. You will surely get a helpful answer from someone who's been through exactly what you're feeling.

You'll get through it. We're here to help you. Courage!
Posted By: ChristineB Re: Side effects from radation - 04-12-2012 05:20 PM
Ive seen some lucky members sail right thru with very few struggles. Those are the ones who have the best nutrition (3000+ calories and 60+ oz water daily). To make it easier on the patient every single day they need at least 2500 calories and 48 oz of water. All too often when the going gets tough, and its becomes hard to swallow nutrition becomes harder to take in and water gets skipped too. This leads to a downward spiral which makes the patient feel absolutely horrible. I ended up hospitalized a few times for this. Being malnourished and dehydrated is not something anyone should go thru! I actually was sure I was going to die, thats how awful I felt.

Your question is one thats hard to answer. Most of us started having trouble around week 3 or 4. But we also have control over this by pushing the nutrition and hydration. When you begin to feel lousy is when you must push yourself to get enough in and that will make a huge difference. The hospital can also give you hydration if you arent able to take enough in. Dont forget about that as your backup.

Good luck!!

Posted By: KP5 Re: Side effects from radation - 04-13-2012 12:21 AM
The only input I have is that Kevin felt so good the first 3 weeks we thought it was gonna be a piece of cake. NOT....but everyone is different like everyone said. Good that you are eating. Eat a ton now while you can.
As far as the PEG, Kevin had one but barely used it because he hated it. It hurt like crazy to eat, or I should say drink, mostly, but he would down Lortab and use the magic mouthwash and chug stuff. Mostly Ensure for a little while. He ate scrambled eggs throughout most of tx, for as long as he could stand it. He really doesn't like eggs much anymore!
Good luck. Keep in touch.
Kathy
Posted By: klo Re: Side effects from radation - 04-14-2012 09:56 AM
Hi BF

After all the dramas Alex had with his other treatment before radiation, we expected the worst. To our great relief, Alex handled the chemoradiation really well. We were expecting him to feel lousy by about week 3 and start to feel better around 2 weeks after treatment ended. Every day that he came home from week 3 on, we congratulated ourselves on every day that Alex was ok. For him, misery came in the last week and lasted about 2 weeks.

This is all relative of course - he was on hard hitting pain medication (fentanyl patches, oxycodone - short and long acting) which he had learned was mandatory from his induction chemo experience. He also did not have to manage pain with eating as he was totally dependent on a PEG except for water and the occasional cold/room temperature coffee. He was diligent with his bicarbonate of soda mouth washes and antifungal treatment to avoid any infections and minimise the ulcers. We also had a go at Manuka Honey to treat the ulcers but the taste made him nauseous so was abandoned fairly quickly.
Posted By: saxgig Re: Side effects from radation - 04-20-2012 04:42 PM
You elected not to do last Chemo? Why? Would that have been #3?
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