lung cancer and whole brain radation

davld leon · New User Joined: 13 Jul 2006 Posts: 4

Need some help. I'm 55 years old male with stage 4 lung cancer, had one round of cymo a year ago, now have been told there are 3 "hot spots" in my brain and the recommended thing is whole brain radation.
After going on the net and reading , I'm not sure it's the way to go. Seem to be lots of side effects. I'm in great shape and have had only one small sezure. I really don't care about living longer. I just want to be my best for as long as I have. My mom died of the same thing and actually went pretty smoothly.
Anyone have any advise or opinions.
I'm living in the Netherlands and can't seem to get a streight answer.
Any adivse would be helpful.
Thanks,
Dave

isidella

Hi David,
You are very brave about this.

Let me tell you my fathers experience with whole brain irradiation. He had at least 20 mets in his brain when they started. He lived about 2 months longer after he had the radiation but his quiality of life declined sharply with the onset of the radiation treatment. After the first few doses of radiation, he had really bad equilibrium problems. Very unsteady on his feet and eventually he became limited to a wheel chair. He took dexamethasome to limit the brain swelling that comes with radiation and that steriod gave him aggressive mood swings. He also developed terrible headaches and lost alot of his ability to form and retrieve memories.

In the end, he verbalized that he should not have taken the radiation. He did not regret chemo, but he thought the brain radiation did not help him.

But, it does help some people. It may improve survival. I just don't know that much about it.

I have heard about stereotactic radiosurgery, where they target the individual tumor instead of the whole brain (it is not actually sugery). From what I understand it is better tolerated, with fewer side effects and better outcomes. If you only have a few tumors it may be an option. Here is alink to the latest research on this.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=16062084&query_hl=2&itool=pubmed_DocSum

If you are interested, ask your doctor if it is in option.

Please take care.
Isidella

davld leon · New User Joined: 13 Jul 2006 Posts: 4

Thanks for the imput. After reading about whole brain , I called my doctor and told him I did not want to do it. I almost felt better doing nothing. I called my oncologist and he said that I had to do something with the brain or else the quality of life would be the first to go. So next week I will meet with the radioligist and opt to have the focused treatment. With socalized medicine you have to do your homework. Thanks again and I'll keep you posted.
Dave

isidella

Hi Dave,

Here is another link for you about stereotactic brain radiation.

http://www.irsa.org/radiosurgery.html

Smile

Isidella

tmhb1432 · New User Joined: 04 Apr 2006 Posts: 4

Here is the way it went with us. March 2004 my wife was diagnosed with lung cancer. She went through the chemo and radiation as advised. March 2005 she was diagnosed with a tumor in the right frontal lobe of the brain. On both occasions we discussed the options but it was her decision. She decided, and went with whole brain radiation. 14 treatments to be exact. April 2005 we had to put her in the hospital due to the "radiation waking up the herpies cold sore virus which lives in the temple area and it went to the brain". She was in the hospital for 62 days. She is still with us but has no short term memory and stays in the bed all the time. In other words she has no quality of life, as we know it. I am with her all the way and do not question any decision we made. The thing you and any of us have to think about is what do we want to do with our lives. That is hard to do. I will be thinking about you and our best wishes are with you. I am thankful for the time I have with her, but I have no idea what my decision would be, anything can happen. Good luck.

mrsponydr1ver · Regular Joined: 01 Jun 2006 Posts: 17

Hi David,

my father's experience was exactly as isidella's fathers experience was with whole brain radiation. the radiation did not improve his survival much and it made his quality of life worse than what it was before having radiation. i'm sorry to hear about your situation, i hope things go well for you.

westlake · New User Joined: 20 Jul 2006 Posts: 5

Hi David:
One of my neighbour with exactly the same disease conditions as you have now, but he had received an alternative therapy with rather good result, contact me for the therapy. email:westlake_klt@yahoo.com

davld leon · New User Joined: 13 Jul 2006 Posts: 4

I started this topic back in july. I went underground for a while. The whole mention of brain tumor pused me over the edge. Lung cancer..fine. Nobody said anything about my brain! I cryed at the drop of a hat. Life got short and the thoughts went heywire. I'm out of it now. Reality bites but the cancer reality is over 1.5 years old now and nothing whould really surprise me. I just wanted to give everyone an update.
Things are o.k. When the first scan was done it was three tumors, so radio sugery was an option. The last can showed 4 tumors, so whole brain was the only option, except to do nothing and that seem pretty stupid. Your can at least eat more candy and watch more sunsets, but you have to do something. So I did it. 10 sessions in a row at the "3" setting, the power setting. Well things started out fine till # 3 when the headaches were upbearable. It's a good thing I didn't have a gun. The medicne was making me have the the worst vomit fits I ever had, even in college. #4 treatment was postponed and I was admitted for observation. I was only in overnight and there turned out to be two problems. The pressure was greater than they expected and I wasn't eating when taking the medicne.
You have to eat when taking "dexamethason" #4-10 went fine. The last session was one week ago. Had a great radiolgist. Met with her yesterday and she said she was handing me back to the oncologist and nurologist.
Had bad burning of the skin behind my ears, taste buds are shot,hungry from the steroids,hearing feels like I'm at the bottom of the pool. I understand all this will come back in a few weeks, hair should start to re-grow in three months.
I'm feeling pretty lucky right now. Do have a new "tingle in my left foot,leg,and hand. I'll mention it to the nurologist next week.
From what I understand "whole brain" again is out of the question. However radiosugery can still be an option down the road, if it'one tumor.
It's amazing to me that some 600+ people have read these stories and only 6 have replyed. COME ON FLOKS! We're all looking for understanding and someplace to share. If you got here in the first place, sometings going on.
I pray for us all
Keep you posted
Thanks for being that someone in the dark.
Dave

winnymac

Dave,

Sounds like you made the right decision for yourself regarding the whole brain radiation. My dad had whole brain radiation nearly one year ago. He had one tumor that had mets to his brain. He had a seizure and that is how we found out about it, we had no idea that was even a possibility, we were concentrating on his lungs! He decided to fight as much as he was able, so he went for full treatment. He came through the radiation well, except for a problem with loss of appetite. The steriods were the answer for that but they had taken him off of them and it took us three months and his almost dying of malnutrition before getting him back on them.

Whatever you do, no matter how difficult and how unpleasant, please keep eating and drinking to keep your body able to fight this disease. It is amazing how important nutrition can be, but there was a point we couldn't even force dad to eat. We actually considered a feeding tube.

Dad went on hospice for three months, mainly because he lost so much strength from lack of eating and drinking. After being back on a low dose steroid he was able to come off hospice and has made a dramatic improvement.

My dad is 78 years old, I can't believe his body has been able to endure all that it has. He was diagnosed two years ago and then the brain mets one year ago. He is still here and still fighting. We are just thankful for ever day. Also they told us the brain radiation might affect his mental abilities but I will tell you, dad is still dad, he still gives me a bad time and is ornery as ever. He can still yell out as many right and wrong answers on Jepardy and Wheel of Fortune as he ever did and his hair has grown back, enough that we have had to shave him a couple of times!
Take care, my prayers are with you, keep up the fight!
Linda P
Salem, OR

isidella

Hi Dave,
Thank you for posting your follow-up. I am glad that you tolerated the radiation so well. I know it can be very scary. I hope that the outcome is positive. Please take care.
Isidella

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