<p>Awesome for you to do that, epistrophy! We’re all thinking of you, LTS. :)</p>
<p>Epistrophy,
You, too, are inspiring!
If I ever need a team, I am employing the whole CC bunch.</p>
<p>epistrophy: That is a remarkable result. And Dr. Bucholtz is too be commended for his pull no punches straight forward reply.</p>
<p>LTS–I have confidence that even if your oncologist thinks he’s the High & Mighty Emperor of All He Surveys, King of Freedonia or yes, even Afghanistan…YOU will never make that mistake! ;)</p>
<p>I Believe… and am hoping & praying for you as you do What Has to Be Done.</p>
<p>Epistrophy – you and Dr. Bucholtz are rock stars!</p>
<p>What mimk6 said! You are one helluva an angel, epistrophy. ;)</p>
<p>Saturday (after 2:30) or Sunday work for me. DH was going to take off work Friday and we were going to go as a family (the annual tradition), but with the impending rain, that may change. I am also free during the week if that is more convenient.</p>
<p>Let me know what you all want to do, either here or by PM.</p>
<p>Dr. Bucholtz’ reply and reference to “fatigue” touches on something else I was wondering about all along with the dementia stats… what information is there in those studies about all the other factors of those patients: average age, type of cancer, other treatment (chemo/radiation), etc.? For example, if the average age of the patients is 65, then those people are going to be more susceptible to cognitive decline than a patient 10 or 15 years younger. And do those stats control for whether or not the brain mets recurred and subsequent bouts of radiation or chemo were required? I mean, do we know whether that means 50% were suffering side effects of the radiation, or could other factors have come into play. If they did manage to control for all those other factors, I am amazed… I wouldn’t think that they would have a large enough sample of youthful, long-term (+2 years) remission patients to draw too many conclusions… and if they do, then maybe that says something good about wbr. </p>
<p>I mean, you could also look at the glass as half full rather than half empty: 50% of the people alive 2 years out do NOT have dementia… which appears to be better odds than the doctors are willing to give right now in terms of a 2 year survival rate from the cancer itself.</p>
<p>LTS,
There is lots of literature that describes the effects of radiation for brain tumors in kids, but I don’t know if any of that applies to adults. I am going to ask epistrophy if I may reprint a redacted version of his letter on my neuropsychology professional listserv, and ask for any literature, references, or any personal clinical experience with the effects of WBR in adults with metastatic brain CA. This list has over 2000 professionals on it worldwide, and they are wonderfully collaborative. I am sure I will get helpful information, and will report back. Stay tuned. Epistrophy-- is this OK?</p>
<p>Ahhh- calmom posted while I was typing, and made me realize I forgot to mention something. I am asking my peers to assume, hypothetically, that the metastases all disappear and that we try to covary out the effects of the primary CA and the treatment effects for the lung CA. I know my colleagues would be quick to want to address the effects of the tumors themselves. I am asking my colleagues to try to address the effects of the WBR itself, not the secondary variables. I remain hopeful that I’ll get many helpful responses.</p>
<p>LTS-
doing a little checking myself, I found a few places to start. If you have access to medline for medical journal articles, here are a few:</p>
<p>
The keywords for your search should be “neuropsychological effects of whole brain radiation” or variations thereof. Hope this helps.</p>
<p>Aah, that worked. Gotta love Google. </p>
<p>I just found an entire brand new book on the topic, “Intracranial Metastases: Current Management Strategies (First Edition)”
Published Online: 14 Jan 2008</p>
<p>Sample chapter titles of particular interest:
"Chapter 8:
Whole-Brain Radiation Therapy (p 126-138) "</p>
<p>“Chapter 12:
Metastatic Lung Cancer (p 199-220)” </p>
<p>"Chapter 25:
Neuropsychological Impact of Brain Metastasis and its Treatment (p 430-444) "</p>
<p>[Wiley</a> InterScience :: Session Cookies](<a href=“http://www3.interscience.wiley.com/cgi-bin/bookhome/117867644/]Wiley”>http://www3.interscience.wiley.com/cgi-bin/bookhome/117867644/)</p>
<p>You can download abstracts of each chapter for free. The full PDFs are also available, but the direct web site link above will require payment for each. </p>
<p>Better yet – its on Google books: [Intracranial</a> Metastases: Current … - Google Book Search](<a href=“Intracranial Metastases: Current Management Strategies - Google Books”>Intracranial Metastases: Current Management Strategies - Google Books)</p>
<p>
</p>
<p>Certainly.</p>
<p>Epistrophy-
Thanks for the front and back-channel response, and for permission to forward the letter. (we are both on line early this morning!)</p>
<p>Epistrophy - I’m shocked and amazed by your efforts and Dr. Buckholtz’ fast response, but, I am terrified by something he writes, and I am hoping it’s just that the stress of the situation has my reading comprehension skills seriously impaired…</p>
<p>he says "…over time (measured in years) decreased concentration and memory (it is different from dementia by medical criteria but to the average person is indistinguishable)…</p>
<p>Does that mean that the decreased concentration and memory over time appears to be just like dementia to the average person? What exactly is he saying here? That I (potentially) won’t be medically defined as demented, but will appear that way to everyone else???</p>
<p>Aside from whatever is the answer, I cannot express enough my sincere thank you to you, and to everyone else who is responding here. I just logged in and haven’t had time to digest everything that has been posted, but I do want to make sure that everyone knows how much I appreciate this.</p>
<p>Sad to say, LTS, I think that is what he is saying. He doesn’t give stats, but does allow that this is a response some patients have. He certainly does not deny this outcome, which I think is to his credit.</p>
<p>That is why he says it’s a difficult decision to make.</p>
<p>I wish I could be there to hold your hand as you read this, and hold your hand as you decide.</p>
<p>Well I am, just not in the flesh.</p>
<p>This must be the worst news. I’m so sorry.</p>
<p>However, he insists that this is the treatment of choice and the standard treatment.</p>
<p>The major symptom seems to be memory loss, whereas dementia involves other symptoms as well.</p>
<p>However, this response is nowhere near universal.</p>
<p>I’m so sorry, dear LTS, that you should have to be facing this decision.</p>
<p>LTS-
Dementia, by definition, is a general decline in cognitive function. (There are many underlying processes that can contibute to dementia.) “Dementia” is usually the term used to describe the global changes in cognition. Within this are many specific areas of cognitive abilites that can be affected (memory; verbal skills; visuospatial skills; executive function- meaning organization, judgement, planning, problem-solving, etc; attention/concentration; apraxia; agnosia; motor skills; etc etc. Attention/concentration would be just one subcategory within a global description of a dementia (and there are many different types of dementia). Hope this helps.</p>
<p>One question that has been asked on my professional listserv- do you still have the option of selecting between the cyberknife vs WBR, or are you deciding between WBR treatment or no radiation or treatment of the metastatic brain CA at all? Are there any other options they are proposing? I was not sure how to answer this. Looking forward to your clarification of this.</p>
<p>Calmom, you raise important points. I cannot tell from all of the available information what are the odds of falling into either of the categories, however, as my primary oncologist reminded me on Monday, the primary cancer must be controlled, and this is the priority. </p>
<p>Survival stats for small cell haven’t changed, and my chances of living two years from diagnosis are still 1% - 6%. </p>
<p>But I’m hearted by the fact that I have already outlived my initial prognosis…</p>
<p>Perhaps it is possible - assuming I can survive the original cancer, to do mental exercises or something, combined with exercise and diet, to ward off central nervous system deterioration…</p>
<p>jym626, I no longer have cyberknife as an option. I am sure that if I really, really tried, I could find some doctor somewhere to agree to it. But I have the doctors I’ve consulted separately, and now Dr. Buckholtz saying that whole brain radiation is the appropriate treatment. There are no contradictions here - every doctor says the exact same thing. And all of their CVs are very impressive. </p>
<p>There is no other decision to make. My first treatment is scheduled in two hours. There is no point waiting, because the answers clearly won’t change, and I cannot risk allowing these mets to get larger or out of control while shopping for answers that I like better than what I’m hearing now.</p>
<p>Here’s my nonprofessional gloss fwiw:</p>
<p>There is a risk of decreased concentration and memory.</p>
<p>“Risk” means that the decrease may happen or it may not.</p>
<p>The decrease, if it happens, would occur over a period of years.</p>
<p>“Risk” also means that the magnitude of the decrease, if it occurs, cannot be determined in advance. The possible decrease could be small, medium, or large.</p>
<p>It would be great to avoid this risk, but unfortunately there is no other way to do the essential task of attacking the brain metasteses.</p>
<p>LTS:</p>
<p>“… there is clearly a risk of fatigue (expected) and over time (measured in years) decreased concentration and memory …” </p>
<p>There is a RISK; this doesn’t mean that everyone gets it. I gather that doses have recently been reduced. The dismaying results from Sloan Kettering were at doses higher than you are going to have. </p>
<p>One suggestion for potential protection: fish oil. I use the capsules from omegabrite.com.</p>