In Oct 2008, I was diagnosed with lng cancer and started chem almost immediately. In December they found a brain met and I went is for radiostereo surgery. In February they said that the brain tumor showed significany improvement. In May 2009 I was told that the CT scan of my lungs looked very good and they would check it every three month. They had already scheduled an MRI of my head in June as follow up on the brain tumor. Now they say I have 3 new brain mets and my oncologist is refering to a Radiation Medical Group and he thinks they will want to do whole brain radiation. I have read many articles that are not supportive of whole brain radiation. Has anyone had whole brain radiation or is there other options. I suspect I will have an appointment with the radiologist ths week.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Whole Brain Radiation
- By DaveM
- Posted June 28, 2009 at 6:29 pm · 34 replies
- In Non-small cell lung cancer - Stage IV
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Brain tumors Dementia Radiation therapy Decadron Seizures Chemotherapy Pain Aricept Dilantin Memory Lung cancer Parkinson's disease
34 replies
- Oldest first
- Newest first
- By kritiki
- Posted July 4, 2009 at 5:58 pm
- Report post
Would someone please tell me what this WBR is? My husband had 15 Rad treatments following brain surgery to remove tumor which which was lung CA. I have not heard about WBR until seeing it often referred to on this site.
God be with everyone in this special family of caring people,
Thanks,
kritiki
- By stage4survivor
- Posted July 2, 2009 at 2:22 pm
- Report post
Dave,
No one here can make a definitive suggestion and your onc may be correct.
However, you may be "on to something" with this referral.
I would suggest a completely independent opinion before committing to this treatment plan.
G
- By DaveM
- Posted July 2, 2009 at 12:44 pm
- Report post
Thank you all for your time and responses. Unfortunately for me I am still just as confused as I was. I spoke to my original radioloigist last night and what he is saying is although there are only three lesions that they are really close together and that Novalis stereotactic surgery may cause excessive swelling which could be more harmful because of their location. I have been told that the stereotactic surgery they did on the one lesion in December was successful but they still feel WBR is the only wat to proceed. I have an appt with another radiologist next Tuesday to discuss his opinions, but since I was referred t5o him by my regular oncologist and he recommended WBR I assume I am going to get the same.
- By dwareham
- Posted July 2, 2009 at 11:50 am
- Report post
There were four lesions but I don't remember their exact locations. I don't believe any one of them was unreachable by CK / GK, but they were pushing pretty hard on some areas of his brain and were preventing him from thinking clearly.
The main reason we went for WBR was the belief that it would eradicate smaller lesions that were not showing up on the scans.
- By stage4survivor
- Posted July 2, 2009 at 10:07 am
- Report post
dwareham,
How many lesions originally? Why not C/K initially?
I'm aware that location and size can also preclude using G/K or C/K. I had to have 2 different sessions of G/K because the lesions I had were at different locations and the machine didn't have the "reach".
Best,
G
- By dwareham
- Posted July 2, 2009 at 9:25 am
- Report post
:stage4survivor
"I'm really puzzled why WBR was used for several lesions and THEN, C/K?"
WBR eliminated all of the lesions back in Nov. Unfortunately they found a new one back in April (very small) and decided to nip it in the bud with cyberknife. Dad had stopped chemo in January/Feb.
- By nanr448
- Posted July 1, 2009 at 9:23 pm
- Report post
Dear Deb:
Thank you for your support. My condolences for your dad. I know how hard it is to lose a father. Mine past away from Parkinson's disease when I was 23. He suffered much and noone was able to do anything. My prayers are with you and his spirit. Write to me if you need a shoulder to lean on.
Nan
- By cmbrne
- Posted July 1, 2009 at 6:52 pm
- Report post
Dave
Hopefully you got the answer to your question. No WBR. See if you can have TomoTherapy. If they don't have a TomoTherapy machine at your cancer center they may say no because of $$$. Try to find out where they have TomoTherapy before you let them treat your brain mets and discuss the procedure with a knowledgeable radiologist. It's another very good option.
- By Pbishop619
- Posted July 1, 2009 at 3:29 pm
- Report post
Hi Dave,
I had Stereotasctic Radiosurgery on March 30th for 1 brain turmor when I had my MRI on May 4th I had 2 new brain tumors and the one that had the Radiosurgery was bigger - my Radiadion Oncologist suggested 10 rounds of WBR to me which I just finished on the 12th of June - so far the only side effects I've had are hair loss and some problems with my ears, they feel like they need to pop, like when you are in the plane and they tends to effect my hearing a little - I have an appointment with an audiologist the 22 of July to see if I actually have any hearing damage or not. So far I don't feel my memory has been effected at all - I have been fatigued, but I was like that before so I am not sure how much of that is from the radiation - I have been on a chemo break while doing the radiation - I am scheduled to start back on chemo on the 9th of July. I am scheduled to see the Radiation oncologist on July 17th and he will then schedule me for an MRI to see how the WBR did - If I have any brain tumors at that point, I was told I would probably have more Stereotactic Radiosurgery - I just hope I don't have to go down that road.
I wish you luck - God's peace - Pamee
- By xxitsmedebxx
- Posted July 1, 2009 at 1:18 pm
- Report post
All you can do is pray & be there for him. It's hard, very hard but you'll find your strength in your love for him. You're in my prayers as well as your brother.
Hugs
Deb
- By nanr448
- Posted July 1, 2009 at 12:49 pm
- Report post
I'm sorry about your dad. My rbotehr in 2 weeks is completely not himself and teh saddest thing is that he feels so sick now after treatment began he has no desire to fight at all. I am desperate don'tnow how to help anymore....
sister in grief
- By nanr448
- Posted July 1, 2009 at 12:47 pm
- Report post
My brother is on his 2nd week of WBR. IT has weakened him tremendously and he feels the dryness effect in his throat. other than taht he has not shown signs of any other side effects. because he has several lesions on his brain they said his only solution was full brain radiation. We do not know the results yet because uit takes a few months to be retested. He says it is a very unagreable experience and teh steroids are making him a madman! he is veryu very angry all teh time. It is a bvery tough treatment period right now and he is vey depressed.
- By xxitsmedebxx
- Posted July 1, 2009 at 12:02 pm
- Report post
My dad did not ever recover from MBR either. He was 64 years old & only made it as far as MBR. I'd look into other options. My dad went down rapidly after MBR. He was on his feet before it., today he is gone :( Sorry. Still dealing with a lot of anger & pain. It's only been 1 month since his passing. My prayers are with you.
Deb
- By stage4survivor
- Posted July 1, 2009 at 11:50 am
- Report post
dwareham,
I'm really puzzled why WBR was used for several lesions and THEN, C/K?
Tina,
It's sad you've had these issues post G/K but, I completely agree with you on WBR.
Ingrid,
I won't post in a public forum how I would proceed and it's not your fault, you trusted her physicians.
GP,
You are the MAN! You ALWAYS provide the best research for everyone here. I owe you for still having ANY cognitive skills left, such as they are.
$100K for G/K? WOW, guess I didn't pay any attention when mine were done.
G
- By dwareham
- Posted July 1, 2009 at 10:53 am
- Report post
My dad (71) had WBR in November. He had four mets that they could see and they assumed he had several / many microscopic ones. He sailed through it.
Now almost eight months later, we believe it was the right thing to do. The only side effect he suffered from was fatigue and the mets disappeared.
He also had cyberknife for one met that grew afterwards and he did fine through that.
As far as his mental state, he did go through a period of "dementia" but we believe this was caused by being in the hospital too long (chemo put him there). When he came home, he snapped out of it.
We do still give him Aricept, an Alzheimer's drug that apparently helps post-brain-radiated patients. He is definitely much clearer now than he was in November. He's not 100% mentally but I'd say he's about 90%.
I know many people have bad experiences on WBR, but ours was altogether positive and productive.
Good luck!
- By TinaIrena
- Posted July 1, 2009 at 8:46 am
- Report post
Dave,
I had Gamma knife on two brain tumors last October at Tuft's Medical Center in Boston. At first my Oncologist tried to rush me into WBR but I am trying to avoid that at all costs. The Gamma knife showed shrinking in the months to following however about a month ago I had a small seizure followed by a more severe one five days later. A brain MRI showed growth and brain swelling at one of the tumor sites. After conferring with Boston my Radiologist decided that this could be Radiation Necrosis, a build up of dead brain cells from the radiation. However on my own research it appears that this is just a guess since they can't know for sure unless they do a biopsy. I'm now on Dilantin for seizures and the Decadron a steroid for the brain swelling. I had a terrible manic episode last time I was on Decadron so my family and I are very afraid of it. I don't know what is next for me, but I do know the last resort will be WBR. I go back for another MRI next month maybe then we'll have a better idea what is going on.
By the way according to my insurance statement the Gamma Knife cost a little over $100,000. I hope Medicare would allow me to have this treatment again if needed since I no longer have that insurance.
Good luck,
Tina
- By gpawelski
- Posted July 1, 2009 at 8:28 am
- Report post
HBOT For Radiation-induced Necrosis
http://www.inspire.com/groups/advanced-breast-cancer/journal/hbot-for-radia tion-induced-necrosis/
- By Ingrid118
- Posted July 1, 2009 at 7:50 am
- Report post
I am absolutely horrified reading about the experiences with WBR. My Mom finished 15 WBR sessions May 15 and has not been the same since. I am extremely worried and wish I would have researched more before we put my Mom through this - I am so upset with myself, I have researched everything about my Mom's care since she was diagnosed in Nov 2008. I feel like I dropped the ball. We were so rushed into the WBR, they said it was our only option when they found that the NSCLC spread to her brain. We found out on a Wednesday and they acting as if we had no time, she was told to meet with the Radiologist and start WBR two days later. They even told us to skip her Chemo treatments because we HAD to take care of the brain mets immediately. They said they were very, very small, but there were several. We were never told that WBR would cause any side effects, except fatigue & hair loss. My Mom's speech is so slurred that you can hardly understand her, she has fallen several times and walks like she is 30 yrs older than she is - she is only 62. I feel completely mislead, the dr's never said any of this was even a possibility. I feel that I should confront them on misleading us, but thats not goign to undo what is already done. My Mom was doing really well before the WBR, now she is so weak and has these debilitating side effects. Is there any way she will recover from this? Like I mentioned she is only 62. I am starting to doubt everything these dr's tell us anymore. The standard of care in the medical community has been such a shock to me from the start of this nightmare. Any advice or is there anyone who made out ok after WBR?
- By StuartFL
- Posted July 1, 2009 at 7:00 am
- Report post
NSCL,
I agree with you. In our case the WBR took quality of life from my dad.
pam
Add to the discussion