Radiation and its affects on you Reply to Kevins Post

suzzeeq1959

Hello all-

My name is Susan and I am new to this website though Ive looked at it several times for information. I have Non Small Cell Stage 3B Lung Cancer. No - I do not smoke.
I am an ex smoker of many years and had a chest x ray in 2000 that indicated I had all the signs of someone who never smoked at all. I was elated and lived a very health conscious life. It was a shock to here I had NSCLC. I had trouble with one leg swelling. My primary doc was perplexed and never thought to do a chest xray. I became proactive in finding the cause and went to several specialists until i was comfortable with their treatment plan.

This morning I read a post from a man named Keven regarding the fatigue he is experiencing after radiation. I had chemotherapy and radiation. I thought the chemo was nasty.
The radiation fatigue is like no other Ive ever experienced.

Kevin - I hope you read this. What area did they treat? My treatment was in the chest - neck and upper back. I had 30 treatments. I really thought they were going to kill me.
I believe they take you as far as they can so nothing "sprouts" back. Radiation is cumulative. Its keeps building even after your last treatment. THATS when this wicked tiredness set in for me. Your throat is hamburger and will be for a few weeks.
If possible ask for someone to help you for a few weeks. I could not go to the bathroom by myself. I wasn't eating or drinking because of the pain and reflux. Pronotix twice daily has worked best for me for the reflux. Its prescription so ask your doctor.
As the radiation nurse drilled me about "drinking water" it was like she ignored the inside of my throat was riddled with sores!!!! Lets see how much she could drink is what I was thinking. It takes a while for the silia (spelling?) the little hairs in your throat to grow back. Ive been hospitalized three times for dehydration and constipation.
if you cant drink tell your doctor. Have a visiting nurse come and set you up with iv fluids. It makes all the difference in the world.

Im still quite exhausted. If it wasnt for the kindness of a dear friend I would not have been able to care for myself. Its quite depressing.

Everyone is different. I hope you have a good rapport with your doctor. If not get another. I go to the University of Chicago Medical Center. My Oncologist is Phillip Hoffman. The man is top draw. My prognosis was grim at first and now I seem to be exceeding all their expectation.

Kevin - the fatigue is horrible. I couldnt get my socks on without assistance two days ago. I was threw up everything I ate or drank. If this is happening to you get with your doctor immediately. I used the powder packs of crystal light and gatorade to flavor my water and boost my electrolytes.

Yesterday I ate for the the first time in 5 days. Today Im still weak but i dont feel as bad as i did yesterday. My Radiologist told be the post effects fatigue - nausea could last for several weeks and then start to subside. Im on my second week of post treatments.
The other mistake I made was not tapering myself off the narcotics. I was sick of being constipated. Well that too threw me in a tail spin as well. Im not addicted by any means.
Your body after months of being on morphine or whatever you took for the pain needs to be tapered or it jolts your body in a state of with drawl. Not pleasant.
After meeting with my Oncologist yesterday and talking about the awful fatigue etc
he told me to go back on the morphine and over the next few weeks taper it down.
Like - two tabs daily for 3 days then 1 tab daily for 3 days and so on. So your body doesn't flip out. Its made a big difference for me.

Kevin - it will get better, Ive cried and cried I couldnt take it anymore and everyday seems to be a bit easier. But even if you dont eat a lot right now you have to stay hydrated. IV fluid is the only way if you cant swallow. Also ASK about Carafate ( coats the throat lining) and Magic mouth wash - xylocaine and maalox - you drink it like a shot before meals. There are about 8 different recipes but most Oncologists are familiar with these. Also Zofran for nausea 3x daily helps too.
Its important to continue these front line of drugs for awhile even after your treatment is over.

I hope this helps. It will get better. When your tired - rest. DO NOT force yourself to do anything. Listen to your body and when you read books or posts - take away what makes sense to YOU! You are an individual and what works for another may not be for you.

I'm in the trenches of the fatigue right now. Its hell. I had to ride in a wheel chair yesterday because I couldn't walk. I hated it.
But after receiving fluids I felt better and was able to eat a little food for the first time in five days and it stayed down.

Kevin - have faith and no it will get better everyday. I have always looked at the bright side of things and with cancer its very difficult. These are my own personal experiences I care with you and I hope you find the same will be for you. Every day a tiny change for the better. Walking without becoming dizzy - exhausted after putting your shoes on - no appetite. Rest give yourself a break and no there are lots and lots of people who experience many of the same things. Some more severe than others. My fatigue was severe.
Its now graduated to moderately severe.

My heart went out to you when I read your post. I hope you see my response. I had to log in etc and then I couldn't find your post. Hydration is so important. I learned that the hard way. If you cant drink you cant drink. Then talk to your doctor about iv fluids.
Its truly the only way I started to feel even a little bit better.
Its easy for them to tell you to do this and that - but when you cant swallow or put one foot in front of the other life is a challenge.

Please hang in there.

Warmest

Susan

soccerfreaks

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bluerose

Hi Susan
I just had to write about a comment you made about the cillia growing back after radiation and chemo. YIKES. I have never seen anyone mention this before and from the start I knew that was what was wrong with me after my treatments, was diagnosed with non hodgkins lymphoma 20 years ago and after initial diagnosis and treatment it came back after a year and I had a bone marrow transplant with total body radiation after that. Every time I went out after I sort of recouped (have never been able to return to work due to side effects from the treatments) I would catch some bug and was on antibiotics all the time til about 5 years ago, maybe a bit longer when finally I noticed the cillia in my nose grown back a bit but not like before. The infections were stopping and that to me was due to the filtering of the new cillia growing back but it took years and only one doctor in all that time told me that is what it was and no one before or after him validated that. Horrible. Doesn't seem like rocket science to me.

I continue to have extreme fatigue to this day and as a matter of fact it's one big reason for my continuing disability plus other side effects from treatments, some that are quite severe.

There is a big price to pay for many who have undergone certain treatments but the tradeoff is certainly life for many of us who continue to survive long after treatments are done. I got to see my family grow up and without all the treatment I would most definitely not be sitting here typing to you now.

The other thing to remember in all of this is that no two cancer patients are ever the same as to what the outcome will be not only for the cancer but for side effects as well, some get off with hardly a scratch and others not so much but there are many factors to consider as to why things turn out as they do.

Blessings, Bluerose

P.S. I couldn't find my glasses when I typed this so pardon the typos, bound to be some. lol.