Looks Like Another Bad WBR Outcome ?

[Bill]

My wife's WBR induced postradiation leukoencephalopathy has created a mentally diferrent version of the same person. We spent the last two days getting this sorted out with her NS and a neuropsychology expert. So far, some of her basic favorable traits that make her so sweet remain unchanged which is good. Her behavior is better when she gets out and is able to spend time with her friend, esp. with their dogs. ( Prior to dx my wife and her friend co-founded a local dog therapy program ). Most noticeable mental changes include significant deterioration in short-term memory. Longer term memory seems okay. As Kaffie mentioned, loss of ability to understand the value of a dollar is a good example of a basic lost ability. This is important to recognize because it is clear that my wife wouldn't been able to handle even basic personal finances in my absence w/o help. Her background is in bookkeeping and accounting and up until these latent WBR symptoms hit she was right on top of family finances. Now her financial capabilities are comparable to a young child. Another major change is that she is easily confused. Coordinating mutiple tasks is difficult for all of us. But, in her case, at present coordinating two simple tasks is too much. Confusion usually results in a child-like tantrum. This morning is the first time that she was confused by having to coordinate her weekly Saturday morning phone call from her family with a morning dog walk with a friend. This phone call / dog walk has been a weekly tradition and one of the highlights of her week. This confusion caused her to cancel the dog walk and take the phone call. Some personality changes that we have noticed can best be described as a general hardening in attitude about people, places, things and events.For instance, inappropriate laughter or indifference to situations that would have shocked and saddened her in the past. At this writing, there appears to be no further deterioration in her neuromuscular control. But, as previously posted, she no longer can safely walk w/o her cane.

The contents of this post, as well as other posts that I have shared with you over the last 16 months, are sometimes difficult for me to share and certainly aren't posted to " scare " anybody. Just trying to share experiences from one case that may help another reader(s) facing a similar situation to better understand and cope.

[gpawelski]

Bill

Your posts are not meant to scare. What you've experienced is very real, and not a rare occurrence. Some people would have you believe that because "their" bodies didn't give out after receiving whole brain radiation or dose-intense chemotherapy that these treatments are "okay." Sometimes it is good for the soul to hear what others in similar circumstances have to say. I believe you have done that very well.

The quality of life must be considered as a major decision point in cancer care. If more people researched how and why their loved-one was injuried or died after being treated by orthodox cancer therapies, then I believe there would be a movement to have more effective and less toxic treatments available. I hope that you will continue to be a advocate for many loved ones and help others in their own journeys with cancer.

[Bill]

Bill

Your posts are not meant to scare. What you've experienced is very real, and not a rare occurrence. Some people would have you believe that because "their" bodies didn't give out after receiving whole brain radiation or dose-intense chemotherapy that these treatments are "okay." Sometimes it is good for the soul to hear what others in similar circumstances have to say. I believe you have done that very well.

The quality of life must be considered as a major decision point in cancer care. If more people researched how and why their loved-one was injuried or died after being treated by orthodox cancer therapies, then I believe there would be a movement to have more effective and less toxic treatments available. I hope that you will continue to be a advocate for many loved ones and help others in their own journeys with cancer.

Greg :

Thanks for remembering my wife's WBR experience and her status. An interesting attitude has emerged about her situation within her medical group. Her symptoms, primarily involving diminished S/T memory and intellect, are considered too limited to warrant any official neurological testing and tx. In other words, their message to us at this time is consider yourself lucky on this issue and don't dwell on it. They admit that this condition is usually progressive. They offer sort of a step ladder approach RE: the changes and damage. Change visible only by brain MRI, as in my wife's case, is considered minimal ( sort of like step 1 ) and then the visibility and damage / symptoms advance from there if progression occurs. They say wait for another brain MRI to reaccess but they can't agree on a 3 month or 6 month interval. Also, as you reported to this board, I was told that even localized brain radiation ( esp. in high dosage ) or boost radiation can be very destructive to the brain ( nerve & vascular ) far beyond the limited area irradiated. These unfortunate consequences are usually acute onset, not delayed onset. My wife's rad onc repeated himself again and again that WBR-induced white matter damage to some degree is unavoidable. It's the nature of the procedure. Outcome from individual to individual will differ as with any tx depending on several patient and technical variables. Chemo as a causative agent was mentioned as a contributor if not sole causative agent. I must say that you have clearly devoted much time and research to this subject as much of what you have written on this board seems to have been confirmed by these expert rad oncs and NS.

Thanks much for the input on this subject. I do agree with the majority on this board that rad onc's need to be more candid about WBR adverse effects, in particular those classified as delayed onset, progressive and permanent.

[Fay A.]

We need to factor in the very real depression and anger that the patient feels. For many of us WE ARE AWARE of the changes on some level, whether we admit it or not. We know we are somehow "less" than what we were. And that is very hard to live with day in and day out.

I have to work hard at keeping the anger at bay. I have to make a conscious effort to NOT be "harsh", because what I'm living is pretty harsh. The value of a dollar seems a small thing when I can no longer do my life's work. What am I saving it for? My future? Well, yes...sort of. But it isn't easy to accept, and I have to work at reminding myself to be a responsible adult.

I shared this with you not to "hijack" your post, but because this is all relevant to those of us living with white matter damage (which I have, according to my MRIs.).

[Sundrop1964]

Bill,

I can't thank you enough for your posts. It is hard enough to get over the death of a loved one without feeling like somehow the treatment was part of the problem.

Thanks,

Sundrop

[karen335]

Thank you everyone for sharing this information. Bill, your explanation about brain necrosis was very informative and helped me. Your right, radiation oncs. do not tell you everything. I got my info. right here on this board from other people's experience and also the Internet. I had one met surgically removed, stereotactic radiation June 2004. Having swelling and balance probs. Radiation onc. (without seeing scans) said you need WBR. My neurosurgeon juat did a PET/CT and said I have beaten the odds, believes it to be radiation necrosis. Sent me to new facility for testing...

Please keep sharing,

Karen

[Fay A.]

I do feel sympathy for those of you who are left when your loved one dies. But the bottom line is we all need as much information as we can glean in order to make informed and appropriate decisions for ourselves. And when I say "we" I mean those of us who have the disease. Because it is OUR lives that will be extended by these treatments. OUR lives that will be impacted the most by whatever happens.

Keep the information coming, Bill and anyone else who chooses to share.