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Prophylatic Cranial Irradiation

bugsy127
Posts: 12
Joined: Feb 2006

Hi,
I was wondering if anyone has had any experience with the clinical trial for treating nsclc with whole brain radiation treatments to PREVENT lung cancer from spreading to the brain? I know that it has been standard treatment for sclc for some time. Has anyone out there had it done for sclc? My Dr. is recomending I have it done, but after reading info on it I am very afraid of long and short term effects (almost as afraid of the cancer spreading)They say 50% of people with locally advanced nsclc will have spread to the brain at some time during the course of the disease. Any info would be greatly appreciated. I'm so glad I found this web. If I can help anyone out there I surely will. Thanks.

michaelcie
Posts: 133
Joined: Nov 2001

hi, I have sclc, was given a 5% chance of survival. I opted out of the brain radiation because I did not like the side effects. I am now four years in remission . I would suggest to you to make a choice that you can live with, because there are no guarantee's in any of the treatments. I just chose not to have it, and whatever happens I accept it. I hope this has helped you some. I had the chemo and the rads treatment to my left lung . I would also demand a Pet Scan before you go on with the brain rads, that will let you know if you have any active cancer anywhere else , this is supposedly a prerequisite to the treatment. Hugss and in my prayers Mike

bugsy127
Posts: 12
Joined: Feb 2006

Hi Mike,
thanks for your reply. 4 years! I would gladly except 4 years.(more would be better of course)do you mind me asking how old you are? I just turned 49. I quit smoking 23 years ago. I had a brother who died of lung cancer at 49. anyways i did have my pet moved up ,i go tomorrow. results of cat and brain mri and pet next thursday. i,ve been about 90% sure that i,m not going to do the brain rad.i have enough problems with memory (chemo brain,old age and being a blond)i don,t need anymore.Ha! Thanks again for the feedback. God bless you!!

michaelcie
Posts: 133
Joined: Nov 2001

Hi bugsy, sorry haven't gotten back sooner ,but have been ill with flu . I am now 55, also smoked for 30 years, two - three packs a day, quit when I started chemo, not because I had the willpower, the smell of anything just made me vomit, so, after seven months of not being able to smoke I was unhooked.I first started treatment with three 9 hour days of cisplatnum and vp-16 chemo, off for three weeks and then second cycle I had a terrible reaction and was hospitalized for five days, I was then switched to carboplatnum, vp-16 and taxol, again three nine hour days (outpatient) and off for three weeks. I had four cycles of this (total of six cycles) until the tumor was shrunk small enough to get into one port of radiation. In the beginning tumor was 5 inches x 4 inches x 3inches.It was on my lung, in lung, in lymph nodes, wrapped around my aorta artery and pushing against my esophogus. MY fourth cycle I started radiation to chest, side and back, five times a week for six and a half weeks. The tumor is now the size of a large walnut and is dormant. I know how terrible this damn disease is but keep the battle and I know I and many others are praying hard for you. I hope my description of meds and treatment helps you some. Never give in to this, I know it is easy to say, but I feel the mind set is very important in the battle. I have just read your latest post, I would talk to your oncologist and also seek a second opinion if you are not satisfied with what your oncologist says. It is your life and more minds are always better for you, it is always better to have more minds involved , getting different idea's. I hope I have helped you in some way. Big hugs and in my families prayers, Mike

crot1998
Posts: 67
Joined: Sep 2005

Hi there, I was just wondering when your tumor stopped growing and how often you have scans? My father has nsclc and responded to carbo/taxol and is taking a clinical trial drug daily to keep the tumor down. It too is about the size of a large walnut but I always worry as we always have scans to monitor the growth. I would like to hear more about your experience.

michaelcie
Posts: 133
Joined: Nov 2001

I just had a bone scan and a ct-scan, I was getting these twice a year for the last year, before that every four months. I am now down to once a year unless anything develops.MY tumor stopped growing or had shrunk to port size of rads by my fourth cycle. It is dormant, also is inoperable. My oncologist told me I am not cured it is dormant and could stay that way or become active , just as easy. She feels good (onco) about it because she said each year you have no activity , it increases your chances by leaps and bounds. This cancer (lung cancer) is one of the nastier ones, but is beatable. I have two friends who also are lung cancer survivors!! Never give in !! Big Hugs and in my prayers Mike

crot1998
Posts: 67
Joined: Sep 2005

Thanks so much for the reply! What a wonderful story that at least I can relate too. I am not sure what you meant by port size of rads? We are Canadian so maybe that is something in the US? My fathers also stopped growing after the fourth cycle but like I said he is on a clinical trial drug as well to keep it down. How long have your friends lived with this nasty thing? thanks for your thoughts, much appreciated during this difficult time.

bugsy127
Posts: 12
Joined: Feb 2006

hi all
i won,t be getting rads to the brain for sure. the cancer has come back (or never left) and is now in both lungs.see my post above. thanks mike you are truly an inspiration. YOU ALL ARE AN INSPIRATION!! we're all in this together, we'll fight it together! GOD BLESS US ALL

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