long-term side effects of whole brain radiation

Hello everyone,
I've been offline for quite a while but I'm back and need your help.
My husband has been cancer-free for two years (non small cell lung with brain mets). His last treatment, in the fall of 2010 was whole brain radiation. Since then he has deteriorated in many ways, most recently in June when he was hospitalized for pneumonia. Since then he has become wheelchair-bound, incontinent, unable to write, has problems reading and speaking, loss of mechanical ability and with a great loss of mental acuity. (This is a man with great brilliance and many degrees).
He is coming home from rehab in two days after being there for 6 weeks following a bout of pancreatitis. This man doesn't seem to be able to catch a single break.
What I want to know is anything anyone can tell me about brain regeneration following WBR. He has lots of inflammation from the radiation and constant headaches. Over-the-counter painkillers do little and the stronger ones turn him into a zombie. Is there any hope he can get better?
Most importantly I want to know if anyone knows of any research and/or clinical trials into the long-term effects of WBR. So many are surviving but the costs to them are HUGE. Is there any good news out there? The docs here do not know (and if they do, they are not telling which, in itself, is not good news)
You guys are on the forefront of all the knowledge, good and bad. I want the truth and so does he, not something sugar-coated. We've told the docs that, but they still demur. I believe they truly do not know what to expect with this dastardly treatment. Saved his life (at least so far) but what a cost.
Thanks, folks. I know you are the greatest!

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Here is some information about radiation-induced necrosis of the brain and its possible treatment with Avastin

http://cancerfocus.org/forum/showthread.php?t=3551
http://cancerfocus.org/forum/showthread.php?t=1264

Greg

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Hi Greg,
I am heading for bed so have not read through this yet but will. Am very happy to have heard from you because I remember you are the one with the good links, the knowledge and the willingness and time to share all this. I am very appreciative.
Together we really ARE better, aren't we.
Thank you. I will spend some time with this info tomorrow- promise!
Louise

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Greg, I have read this and have a call into the oncologist. Radiation-induced brain tissue necrosis has never been mentioned but I bet it's on his mind....somewhere. I keep thinking (and even saying) there is something they aren't telling us and they deny it. Let me just try these words on him and see what his response is.
May I ask you if your wife received Avastin? And if so, what happened? Side effects? Reversal of effects of radiation?
I am a hopeful person but false hope drives me nuts. We have been given false hope by several docs who, in all their efforts, do "mean well" but, honestly, sometimes the brutal truth (just get it out so we all know what's happening) is the best way to go, especially if the patient and the family are asking for it.
You are beacon of the right kind of hope, and I thank you for that.
Louise

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Louise

I know a little bit about how you feel. At our local community hospital, the potential of radiation-induced brain necrosis was never mentioned, as the inept radiation oncologist performed his over-aggressive five fractions (1000 cGY) of focal radiation to the local tumor bed, PLUS twenty fractions (4000 cGy) of whole brain radiation using lateral portals and 6MV photons over a thirty-five day period.

Professional liability in the field of radiation oncology may result from inadequate explanation to the patient of the intent, risks, side effects and expected results of radiation treatment. A patient must always be fully informed whenever risky (over-aggressive) protocols are followed. Inappropriate technique or dosage may subject a patient to increased risk of side effects and complications.

I remember one year later, when I asked this same idiot why he wanted to give my wife some other over-aggressive protocol for a spinal met he failed to diagnose from the year before (causing leptomeningeal carcinomatous). He said, "we do things a little differently here, we are a lot more aggressive." This gave me an indication as to why he gave my wife the whole brain radiation the previous year (he's over-aggressive). I shut him down. And he whimpered like a child!

No. Avastin was just being developed around the time of 1998. And it wasn't known about the benefits of it until about four years ago. I first stumbled across it with the small study being done at MD Anderson. I brought this up with a number surgeon mentors I knew and they were each doing their own small studies of this. In 2000, all we had to look forward to was HBOT.

http://cancerfocus.org/forum/showthread.php?t=1131

I was actually talking to an individual at lunch one day at the University of Maryland Medical Center, where my wife was receiving Gamma-Knife (not thanks to whole brain radiation). She gave me information about how to transport my wife to Duke University, who was doing a clinical trial on HBOT for radiation-induced necrosis. However, eight days later, at home, she expired before we could even try it. I've received numerous emails from loved-ones of radiation-induced necrosis victims and it really worked for most. Those that were able to have it done in time. One of the emailers was the mother of daughter who was at that clinical trial. It was successful.

Greg

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Greg,
I am very interested in HBOT. Avastin therapy interests me too but it appears to have potentially more adverse side effects.
Still waiting for the oncologist to call back which is quite frustrating.
You are a beacon of hope. Thank you again.
By the way, I see you live in Pennsylvania. A big state but am wondering if you are near Philadelphia. We live in NJ, just across the river.
Louise

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I live in the Western Highlands of Berks County, a region along the southwestern border of the county adjacent to Lancaster County, and a small portion of Lebanon County.

The dosage of Avastin for this purpose is much smaller than what is normally given that may have some adverse side effects.

Revascularization is what's needed with radiation-induced necrosis. Revascularization is what HBOT does to the radiation-induced necrosis. It is revascularization that Avastin helps with in radiation-induced necrosis.

Best of luck.

Greg

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Dear weaselm,
I am sorry your husband is having such a hard time.
I see Greg has given yo u some excellent information.

We have a member here. pazza4, her dad has struggled with radiaiton induced necrosis and he had both HBOT therapy and Avastin treatmetns.
here is a link to her profile, you can read about their experiences with the different treatments. She has documented them very well.

http://www.inspire.com/pazza4/discussions/?page=1

I wish you all the best,
Annika

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Greg, I haven't gotten back to you until now because my beloved husband was not doing well. I thought all his symptoms were due to post brain radiation necrosis. Even his oncologist thought so. Gordon was on target to start Avastin therapy to halt the effects of the radiation. His oncologist had, thanks to you, read up on the research on Avastin, and agreed this was potentially a worthwhile therapy. However, last month, just days after visiting his oncologist, Gordon was taken to the hospital with an admitting diagnosis of "change in mental status". To make a long and heart-rending story short, a further brain MRI revealed a mass at the base of his cortex which was determined to be terminal. He came home in the care of hospice and died six days later.
My heart feels as though it is broken in a thousand pieces, but slowly I am trying to put my life back together. His memorial service is this weekend and many loved ones are travelling from near and far to celebrate his life.
Thank you from the bottom of my heart for the care you took to inform me about Avastin. Now his oncologist also knows and, who knows, that might help some patient down the line.
Best of luck to you. I know you understand the heart ache I am experiencing.
Louise

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Dear Louis,
I am so sorry for your loss.
May you be surrounded by love at this difficult time.

The onc may have learned a thing or two from you and your husband and as you said, it may very well help someone else in the future.

A you can see, Greg is no longer on this site, I am sorry to say. You can find him on http://cancerfocus.org/
If you have problems, let me know and I can help you get in touch.


Again, I am so sorry for your loss.

Annika

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Louise,

I am so very sorry for your loss. My heart felt condolences go out to you and your loved ones. Please know that your struggle is not in vain. A big thank you to you and Greg for alerting me to Avastin.

My Mother received WBR and I have discussed Avastin with her Onc a few times to treat her NSCLC. He says Avastin is not approved for patients with brain mets.

I feel like I have a new leg to stand on when considering Avastin as a viable treatment plan for her. I have you to thank for that, for starting this thread. Thank you.

My best to you.

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Hi again everyone. Thank you so much for your caring thoughts. This is an extremely difficult time for me but I am doing well considering I just lost my beloved of 50 years.
This is what I know about Avastin (and it isn't much) -- it's a drug used for lung cancer and has been used in tiny doses for WBR necrosis. My husband's oncologist read the research on this and said it has some value. If you follow this thread back in time, you will see what Greg wrote about this and the references. My husband's oncologist read all that and agreed to try to get it approved by insurance. And that could have been a problem because it is a very expensive drug, even in small doses - possibly a thousand or two for each treatment. He said the course of treatment would probably be a short one, and it is administered by IV infusion over several hours. Sadly, my husband died before they could even get this treatment started. His brain cancer returned to his brain even though he had been cancer-free for two years and had had whole brain radiation in the fall of 2010. This is a nasty and treacherous disease. There are just no guarantees about anything, I guess.
Best of luck to your mother. Together we truly are stronger and need to stick together to move forward. If you are not satisfied with her oncologist, look elsewhere. There are many choices out there and hopefully you live in an area that has medical choices.

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I found this on-line - I hope it helps - my dear friend is about to start 5 & 1/2 weeks of whole brain & spine radiation along with chemo for breast cancer - she is 44 and I have been looking on line for her - God bless you -Kay
The most common condition treated at some Hyperbaric Oxygen Therapy Centers is tissue injury caused by brain radiation therapy for cancer. Wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. Chronic radiation complications result from scarring and narrowing of the blood vessels within the area which has received the treatment. Hyperbaric Oxygen Therapy provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. It also fights infection by direct bacteriocidal effects. Using hyperbaric treatment protocols, "most" patients with chronic radiation injuries can be cured.

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