<p>Oh, Latetoschool – I got a vicarious thrill reading about your phone conversation with the head of the radiation oncology dept., and the pointed questions you asked. I can’t wait to hear his answers after you meet with him tomorrow.</p>
<p>A bit of levity RE: the Wake Forest Study…last year, prior to the May NASCAR race in Charlotte, several interns or ?? people on a congressional trip were advised to get a series of immunizations before coming down here to the “sticks”… Of course it got major headlines, chuckles, and W-T-F? comments from we’uns here in Caroline-y. Maybe the Wake Forest study differences are due to the cooties that we carry down here. </p>
<p>I’ll also be looking forward to the run-down after your meeting with this guy tomorrow!!!</p>
<p>LTS- can not wait for the update tomorrow!! The screenplay is a brilliant idea.</p>
<p>in Philly doing the college tour with our last child, and had to check in on you LTS…keenly interested…what an experience with the mask already…glad your daughter is here with you…always interested in your pithy reports…prayers coming your way from the home of the Quakers…</p>
<p>Oh, my. I’m clearly no Chiuck Norris, of either gender. I wish I could say this came out better, but, it didn’t go well for me today. It has to be me - I’m the common denominator in this thing…</p>
<p>Anyway, we had the call. Bottom line, he came to the phone very angry, a very different person than the one I spoke to yesterday, and he started by saying that he had nothing more to add to yesterday’s discussion, and am I ready to get started or not? </p>
<p>I said I was confused, we had a discussion yesterday; he agreed to look at my films and give me his opinion, etc. What has changed since we spoke yesterday afternoon, I asked…</p>
<p>He said that he looked at the films for over two hours this morning and that was more than enough time to look at my films, and, furthermore, for the past ten days he has been hearing my name from his staff, why is this one patient taking up so much of his staff’s time?</p>
<p>At least by now I understood the source of his anger, so, I said, o.k., so you did look at my films - can you confirm then that I do in fact have six lesions?</p>
<p>You actually have more than six, he said. </p>
<p>Really, I said. How many more? </p>
<p>I don’t know, he said. Maybe nine or so. </p>
<p>Really, I said. I have the report right in front of me - it says six. </p>
<p>Well, he said, we cannot see them. There may be nine, maybe ten. May be only five or may be only three. However many there are, they are all scattered around. The thing is, he said, I know what you need, I have been doing this for 45 years, and you need whole brain radiation. So are you ready to get started?</p>
<p>(I swear I am NOT making this up.)</p>
<p>I said, well, wait a minute. When we spoke yesterday, you agreed that you would give me your thoughts on the Wake Forest study, and explain how the patient load factors into their results - the issue of 50% of the patients getting dementia two years post-treatment…</p>
<p>He said well, Wake Forest, that’s a bible college (this said with a snearing tone). </p>
<p>I was absolutely speechless for a sec or two at this point: I couldn’t even think how to respond.</p>
<p>When I could find my voice, I said, and Memorial Sloan Kettering, MD Anderson, who cite the same sort of results? </p>
<p>He said well, if the dosages are too high, no wonder patients are having side effects and other problems. </p>
<p>So I said, what dosage do you have on my chart?</p>
<p>He said he didn’t know, he didn’t set that up yet. </p>
<p>Then I just confronted him. I told him that I was concerned by his tone and by his reception; that I am a patient facing a rather serious treatment, and, I have questions. He said that he understood and that it was natural and normal to have questions, but, he has been doing this for 45 years and has treated thousands of brains. </p>
<p>We ended with me telling him I’d let him know, and he invited me to call him yet again if I needed more reassurance. </p>
<p>Then, I called his nurse; I asked her to pull my chart to give me the dosage that my doctor prescribed; it’s correct for the treatment philosophy. Then we talked for over 45 minutes. It turns out he is an elderly doctor, from the “old school” as she put it; he just is NOT accustomed to anyone asking him questions, period, end of story. She was very nice and kind; she answered my questions; I came away with quite a feeling of confidence from her. AND, she reminded me, he’s not my primary radiation oncologist anyway; he is just filling in while mine is on vacation. We also talked about boosts and some of the other treatment options I keep reading about, and she told me that those are offered over time, after post treatment scans, etc. </p>
<p>So, I downloaded more articles out of Neurology and Oncology and Journal of Oncology. If the dosage planned for me is correct AND if it stays that way (3,500 centigray x 14 days = 250 cgy per day), it seems that this dosage is low enough to take me out of range of dementia, which from what I can make sense of is mostly caused by higher daily dosages (even if the total amount of radiation is lower). Perhaps if there is a physician lurking, s/he can post back and confirm if my assumption is correct. My oncologist agrees with this so I am hoping it’s correct. </p>
<p>My daughter believes I should find all new radiation oncologists, but, I told her that to start all over again with new scans, etc., a new opinion, it’s just too much. It really is. One of the things he said today that made sense is that right now I’m lucky - these things are very small, and, there are no symptoms. He said he cannot guarantee that will still be the case 4-6 weeks from now, and, many people waste time driving around the beltway getting second opinions. </p>
<p>I already have second opinions, so am tempted to just move forward, in spite of his inelegant manner today. Does it matter so much, as long as he understands the science, and as long as the dosage remains moderate?</p>
<p>I’m getting weary of this…the relationship management is more burdensome than the treatment…</p>
<p>Oh, LTS, what a day! I hear your weariness.</p>
<p>How long will you need to be under the old guy’s care? When does YOUR radiation oncologist get back from vacation so you can get his/her take on the Wake Forest and other results? </p>
<p>Do any of the dementia studies have correlations with total cumulative doses, daily maximum doses, total # of sessions? </p>
<p>I know you will be recording the dosing of each of your sessions. If you begin when your person is away, it seems you should be able adjust your roadmap once he/she gives input.</p>
<p>Mominva, I am looking at that, really hard. I just received email confirmation from another physician in another state that 3,500 centigray over 14 days/250 cgy per day is very safe; they used to give 300 - 600 cgy per day, and even at lower total centigray that caused problems.</p>
<p>The reports I’m looking at seem to support that - the one from MSK gave a patient group 300 - 600 per day, and 100% of the patients who didn’t die developed dementia. </p>
<p>I cannot quite find anything that addresses 250 cgy per day - and it’s the “per day” dosage that seems to be critical.</p>
<p>His nurse said to me it’s a shame I cannot talk to someone who has had wbr (Hippa)…I told her I did talk to one person who has had it; the person cannot think clearly, cannot write email, and, she thinks her oncologist is the president of Afghanistan. </p>
<p>(sigh)</p>
<p>Wow, those MSK results are sobering. I wonder if the same total dose over longer time has been studied.
I think I’d be asking for 150cgy/day x 23 and 50cgy x 1.</p>
<p>another lung cancer “survivor”</p>
<p>
</p>
<p>[Lung</a> Cancer Newsletter/Fall 05](<a href=“http://64.233.167.104/search?q=cache:68vczwOgGLIJ:www.lungcanceralliance.org/news/documents/LCAFINAL_Newsletter_Fall05_000.pdf+“lung+cancer”+survivor+washington+d.c.&hl=en&ct=clnk&cd=3&gl=us]Lung”>http://64.233.167.104/search?q=cache:68vczwOgGLIJ:www.lungcanceralliance.org/news/documents/LCAFINAL_Newsletter_Fall05_000.pdf+“lung+cancer”+survivor+washington+d.c.&hl=en&ct=clnk&cd=3&gl=us)</p>
<p>LTS, I sent you a PM. I have an attorney friend who had wbr & is still working full time with no serious cognitive effects. Definitely NO dementia (I talked to him yesterday and can attest that his brain is working fine)</p>
<p>LTS-stay strong. This may have been posted previously, but thought it might be helpful now…</p>
<p>Schumacher, 53, was diagnosed with small cell lung cancer in June 2005
She credits her survival to a positive attitude and the numerous advances researchers have made in the last 10 years.</p>
<p>Schumacher was one of the women who attended the symposium, titled “Women and Lung Cancer: The Gender Specific Facts,” in New Brunswick. The Lung Cancer Circle of Hope, a statewide grassroots organization, sponsored the event.</p>
<p>Is there any alternative? </p>
<p>Because if not, it would seem as if starting this treatment on a timely basis is very important.</p>
<p>Wishing you well.</p>
<p>Stay strong, LTS, do not let cranky old men and the the system weaken your resolve. If this is what you must do, do it, and do it in a way that you continue to be in charge. Your huge fan club has your back! Hugs. Lorelei</p>
<p>LTS- sorry today did not go so well, keep that positive attitude. Your instincts have not let you down yet, keep using them. {{{{{HUGS}}}} and lots of positive thoughts and energy. 4Giggles</p>
<p>LTS: It enrages me that you, or any patient, should be treated thus, but I have had these experiences also. </p>
<p>Yes, it is wise to separate the emotional/personality issues from the treatment. So I do think you are thinking quite clearly.</p>
<p>I’d still like to punch his lights out.</p>
<p>Counting Down and latetoschool-</p>
<p>Re: post 2029
Some morning this weekend?
MSN forecast shows rain tomorrow and Friday.</p>
<p>If you are up for a CC/DC cherry blossom outing, LTS, pick a time and meeting place.</p>
<p>So sorry today didn’t go well. You deserve so much better. I hope any prospective physicians reading this thread will learn how important it is to treat patients as unique individuals.</p>
<p>
</p>
<p>I think moving forward at this point is wise. And it sounds like he is well aware of the need for keeping the dosage moderate (250 cgy/day). And you know you have an ally in that nurse…you might want to see if she will be there on the day your treatment is scheduled. And maybe take the time to let others at the hospital know how very helpful and supportive she was.</p>
<p>Wishing and praying for the best, as always. Stay strong.</p>
<p>time out for a truly extraordinary doctor</p>
<p>A few days ago, in response to the questions that have been bedeviling LTS of late about whole brain radiation and its risks, I did something that might seem a bit crazy (as in ridiculously optimistic) in an era when so many doctors seem - as we see repeatedly in this thread - not to have enough time even to talk to their own patients, much less to communicate with anyone else. Totally out of the blue, I emailed an apparently well known and highly regarded Bay Area oncologist, Dr. William Buchholz (more about him below), and posed some of these questions to him.</p>
<p>Here’s what I said:</p>
<p>
</p>
<p>Well, if you think it was crazily optimistic to bother to send Dr. Buchholz this message, here’s what’s even crazier: This afternoon he responded! </p>
<p>Here’s what he said in response:</p>
<p>
</p>
<p>A thoughtful, articulate, sincere response from a busy doctor to difficult questions posed in an out-of-the-blue email from a total stranger - something to stop and savor. </p>
<p>If you’re interested, here’s a bit more about Dr. Buchholz (whom I mentioned previously at #1954):</p>
<p>
</p>
<p>[Buchholz</a> Medical Group](<a href=“http://www.buchholzmedgroup.com/aboutus.html]Buchholz”>Buchholz Medical Group)</p>
<p>[Amazon.com:</a> Live Longer, Live Larger: A Holistic Approach for Cancer Patients and Their Families: Susan Buchholz,William Buchholz: Books](<a href=“http://www.amazon.com/Live-Longer-Larger-Holistic-Approach/dp/1565928458/ref=sr_1_1?ie=UTF8&s=books&qid=1206581249&sr=1-1]Amazon.com:”>http://www.amazon.com/Live-Longer-Larger-Holistic-Approach/dp/1565928458/ref=sr_1_1?ie=UTF8&s=books&qid=1206581249&sr=1-1)</p>
<p><a href=“http://www.insightjourneys.com/buchholz.htm[/url]”>http://www.insightjourneys.com/buchholz.htm</a> [includes a video snippet of a presentation by Dr. Buchholz]</p>
<p>Praises be for epistrophy! There is nothing that the collective wisdom and guts of CC’ers cannot pursue and resolve. I believe!</p>