Support for LateToSchool

[padad]

<p>While second-line treatment is pretty standard (since there is essentially one), I think there is some excitement with Amrubicin, a third generation anthracycline that may lack the cardiotoxicity of the older drug and may have an added mechanism. It is approved in Japan. In US and Europe, there are Phase III trials that compare Amrubicin with current standard(s) or as an added on both in frontline and in secondline.</p>

[latetoschool]

<p>Yes, you’re right, I think Duke has the phase III trial, and perhaps some other sites…thank you for explaining the radiologist’s logic to me…it didn’t make any sense when I read it…</p>

[mythmom]

<p>padad: I want to say how much I admire your sharing of your expertise and your quiet caring.</p>

<p>latetoschool: Yes, truth is always wanted. Despite the scan, I am so glad your are feeling so well. We are all still in your corner.</p>

[toblin]

<p>LateToSchool, I don’t know you, I have never met you, we have never conversed and I don’t even know your name. But tonight I said a prayer for you. I prayed you get well. </p>

<p>toblin</p>

[Kelowna]

<p>LTS - like Padad says, subsequent reports are generally compared to initial ones, thus they are much shorter and lack many details. Anything, anything that is out of the ordinary should be mentioned. Sometimes the ordering physician will write the reason for the scan/x ray (like looking for pleural effusion or looking for obstruction or whatever) and those have to be always adresssed.</p>

[calmom]

<p>LTS… just a reminder that mathematically, a “median” is not an average… so what you now know is that 50% of people with your diagnosis live MORE than 5 months, and some of those “more” could be extreme outliers (i.e., alive and doing well years down the line). And I’d be willing to bet that the ones who are coming up on the short side of the median are NOT those whose doctors are puzzling over a “performance status” that doesn’t match the radiologist report. </p>

<p>I read an article yesterday about a girl in Australia who had a liver transplant whose body miraculously changed blood type so that she no longer has to take anti-rejection medications. No one has a clue how this happened – they say the odds against it are 6 billion to one. You can see her picture here:
<a href=“Miracle of the girl whose liver transplant changed her blood type | Daily Mail Online”>Miracle of the girl whose liver transplant changed her blood type | Daily Mail Online;

<p>So you never know… the fact that you feel healthy right now can only be seen as a very positive and encouraging sign.</p>

[1of42]

<p>lts, I’m so sorry to hear the latest news about progression. I can see that you are handling this latest news in the same way you handled the initial diagnosis - with poise and determination. My thoughts are with you.</p>

<p>Couple of things:</p>

<p>With regards to your lawyer friends interesting offer about certain… “medicinal supplements” (;)), consider taking it up. Lots of prominent cancer survivors have openly stated that using marijuana was an incredible help to them in their fight (including Stephen Jay Gould, who survived mesothelioma). I know it certainly was for my uncle when he was fighting colon cancer.</p>

<p>And calmom is very right about the median. Since medians are resistant to outliers, all it takes to make the median 6 months is half a population of old, frail people who can’t take very much chemotherapy. I suspect you’ve read Stephen Jay Gould’s “The Median Isn’t the Message”… he is so right - with an often significant portion of outliers at the extreme right (long survival) of any population of cancer survivors, the median really isn’t all that significant. Even the statistics shows the hope.</p>

<p>And from that same essay:</p>

<p>“But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.”</p>

<p>Sounds exactly like you. :)</p>

[epistrophy]

<p>[Amazon.com:</a> Mom’s Marijuana: Life, Love, and Beating the Odds: Books: Dan Shapiro](<a href=“http://www.amazon.com/Moms-Marijuana-Life-Love-Beating/dp/0375708014/ref=sr_1_1?ie=UTF8&s=books&qid=1201354706&sr=1-1]Amazon.com:”>http://www.amazon.com/Moms-Marijuana-Life-Love-Beating/dp/0375708014/ref=sr_1_1?ie=UTF8&s=books&qid=1201354706&sr=1-1)</p>

<p>Excerpt (from Amazon):</p>

<p>

My parents always kept a small plot of land in the backyard as a garden. It was roughly the size of an average bedroom. Pretty small. But they hovered around that garden all spring and summer. They plowed, fertilized, hoed, mulched, and sampled the soil. They watered. They pinched leaves. At night they pointed to pictures in books and seed magazines, which eventually accumulated and took over the dining room.</p>

<p>And then, a few months later, there was a crop of something. Usually a crop of mutant something. One year it was zucchini. Thousands of zucchini crawled out of the garden as if cast in a late-night horror film. Neighbors came home to anonymous zucchini breads, pies, and cakes delicately balanced inside of screen doors or stuffed into mailboxes. Dad kept a huge zucchini next to his bed in case there were intruders.</p>

<p>I was diagnosed with Hodgkin’s disease in April, the planting month. Dr. Brodsky talked with his arms crossed in front of him, listing the chemotherapy agents I would be taking and their side effects. Prednisone. Procarbazine. Nitrogen mustard. Vincristine. The latter two would cause nausea and vomiting. It sounded unpleasant.</p>

<p>A few nights before I was scheduled to start treatment, I called a friend, the only person my age I knew who’d had cancer. He muttered five gruff words into the phone: “Chemo’s grim, man, get weed.”</p>

<p>I trotted into the living room and nonchalantly announced to the family that I was going to buy marijuana to help with the nausea and vomiting.</p>

<p>There was an oppressive silence, punctuated only by the rapid tapping of my mother’s finger on an armchair. Then she began, her voice carrying that staccato edge she generally reserved for my father. She told me in no uncertain terms that there would be no drugs in the house. She berated me about the dangers of illicit substances, the horrors that visit lives filled with addiction, and swore to me that her roof would never shelter a drug user. She ended her diatribe with an outstretched finger.</p>

<p>With the vigor of an adolescent with a cause, I argued back that for me, marijuana would be medicine, the only medicine that could temper the violent treatment I faced. That it wasn’t addictive, and that my body would soon process toxins far more dangerous than marijuana. At the end of our conversation we were where we began. I knew my mother. Once she was entrenched in a position, argument was futile. I retreated.</p>

<p>I still wonder what happened to her during the night. Maybe she studied the pamphlets the doctors provided, maybe she woke up in a sweat, the remnants of noxious dreams about her son and chemotherapy still etched in her mind’s eye. I don’t know. But I do know this. The next morning my mother ran her finger down the “Smoke Shop” listings in the phone book. She called a number of establishments, asking detailed questions and jotting down words like bong, carb, and water pipe. Then she gathered her keys and purse, and thirty minutes later was walking down the aisles of a head shop called Stairway to Heaven, taking notes and carefully checking the merchandise for shoddy workmanship. My mother is a Consumer Reports shopper.</p>

<p>I was sitting on the ground in the backyard when my mother’s car pulled into the driveway. A few moments later she appeared on the back porch waving a three-foot bong over her head. She proclaimed her find with the same robust voice she’d used for years to call my brother and me to dinner: “Is this one okay? They didn’t have blue. . . .”</p>

<p>When I entered the house she delicately handed me the bong and some money. She brushed dust from my shoulder and softly told me to do whatever I needed to get the marijuana. After a quick phone call I left to make my purchase. When I returned with the small Baggie my mother asked to see it. I felt a sharp adolescent fear, conditioned from years of living under my mother’s vigilant eyes. I handed it over. She looked into the small bag. Incredulous.</p>

<p>“Where’s the rest of it?” she asked.</p>

<p>“That’s it, Ma,” I said. She squinted at me. “I swear, Ma. That’s it.”</p>

<p>She murmured quietly, “Honey, give me the seeds.”</p>

<p>I thought of huge zucchinis.</p>

<p>When my father learned of my mother’s plan he clipped two articles out of the paper with the titles “Police Raid Yields Results” and “Drug House Seized.” He put them under a magnet on the refrigerator and underlined the worst parts. That night, as we prepared for dinner, Mom read them, nodded soberly, and said, “Bring them on.”</p>

<p>That summer my parents plowed, fertilized, hoed, mulched, and sampled the soil. They watered. They pinched leaves. And that August the mutant crop arrived. Ten bushy plants grew over eleven feet tall in our backyard, eclipsing the sunflowers in front of them. Far more weed than I could have smoked in a lifetime.

</p>

<p>[Dan</a> Shapiro’s Home Page](<a href=“http://www.danshapiro.org/book1.html]Dan”>http://www.danshapiro.org/book1.html)</p>

<p>

In a voice that is fresh, funny, and wise, Dan Shapiro offers life-affirming and surprising revelations from his experiences fighting Hodgkin’s disease, falling in love with a nurse, and finally, learning what life is all about.</p>

<p>When Dan Shapiro was a junior at Vassar, he was diagnosed with cancer. When he informed his vehemently anti-drug mom that he had been told marijuana could ease the effects of chemotherapy, she refused to listen. But she was also his mother, he was her son, and life had changed the rules. A gardener, renowned in the neighborhood for her prodigious crops, she quietly tended 10 bushy cannabis plants that grew to tower over her sun flower screen – more pot than he could have smoked in a lifetime.</p>

<p>Mom’s Marijuana is about life in all of its wondrous unpredictrability. Dan’s recollections are optimistic, biting, unmistakably real, and deeply hopeful.

</p>

[jym626]

<p>Ditto what kelonwa and padad said about the scan, LTS. If something important was seen, it would for sure be mentioned. Also, sometimes the radiologist reading the film will write the summary addressing the referral question (e.g. “rule out progression”). If pleural effusion was not seen in the second scan, it is not surprising that it is not mentioned. I’d take that as a good thing.</p>

<p>As for Dan Shapiro-- thats an entertaining read, epistrophy. Review of the alumnae website shows 3 Dan Shapiros having graduated from Vassar, one in each of the last 3 decades (1976, 1988, 1997). Curious, though… he graduated from the same undergrad school, then attended the same grad school (in the same program- earning a Ph.D. in the same thing I did) albeit more than a decade after I did. Weird coincidence…</p>

[anxiousmom]

<p>Latetoschool
Our pbs station ran a program about a chemical engineer who started working on a cancer treatment after his wife had to undergo chemotherapy. He works out of Caltech and City of Hope cancer hospital in California (<a href=“Sign in to your account)%5B/url%5D”>Sign in to your account)</a>. They followed a man who had terminal pancreatic cancer which had spread to his lungs, as he was the first patient in the trial of this new treatment (nanoparticles w/ chemo meds within). Two years later, his lung tumors were collapsing and there were no new growths. Here’s the link to the info about the trial <a href=“http://www.cityofhope.org/curious[/url]”>http://www.cityofhope.org/curious&lt;/a&gt;. There is a waiting list - but maybe the universe would smile on you and you could get in?? I’m sending positive healing thoughts your way, and hope you the very best outcome to this awful disease.</p>

[UCDAlum82]

<p>LTS: The story of well meaning, law abiding friends offering to ensure you don’t have loss of appetite issues was really cute.</p>

<p>And yes, when medicinal marijuana comes up as a question here in California, I’m always surprised at who, among the surburban, law abiding, pillars of the community, are able to offer immediate access.</p>

[NYMomof2]

<p>LTS, from your recent post: “There is also a bit of hope in that perhaps these new uptake areas on the report isn’t really cancer. There’s no comparison CT and he doesn’t have the original films because they didn’t arrive out of Miami yet; he didn’t say this to me specifically but I can imagine that it might explain how someone can have a performance status that seems conflictive with a PET scan report.”</p>

<p>I’m wondering about that. I am not a doctor, and I’m sure your new oncologist is helping you make the best decision, but I want to put something out there just for what it’s worth.</p>

<p>The Miami oncologist wanted to get MR scans to confirm that the new areas of uptake are, indeed, cancer, right? As far as I know, the PET scan is not specific for cancer; regions of uptake reflect metabolic activity. The most likely explanation in your case is cancer, but I think it could also be infection or something else. You have abandoned the first-line chemo, assuming that although it wiped out the original cancer, the cells have become resistant and started new tumors in another area of your lung. I’m wondering whether it would make sense to confirm (by CT or MR or biopsy) that the new areas of uptake are cancer before switching to the second-line treatment. I know you are supposed to start on Monday, but if the new uptake areas are not cancer, would this make sense?</p>

[NYMomof2]

<p>Echoing what others have said, no radiologist would leave a significant finding out of a report out of concern that there would be too much bad news! They always report everything they see; if something is there but not reported, it means that the doctor missed it - which does happen, but rarely.</p>

[sax]

<p>LTS.Thinking of you with hope in my heart.</p>

[latetoschool]

<p>NYMomof2, not really, because six cycles of the same chemo is generally thought to be all anyone should have - additional cycles of the SAME chemo typically have no benefit. </p>

<p>Even if the other areas are NOT cancer (and I personally do not believe they are - small cell typically mets to the pancreas, kidneys, brain, bones, etc. and I do not have anything in any of these areas) there is still the matter of significant uptake to the lung, which is the site of the original cancer. Hence my instant decision to fire my oncologist - he had the report in front of him; he was reading from it; he actually said “great news! the original cancer in your lung is GONE!” - and, then, when I asked him to hand me the report, the language is very, very clear: it says exactly this: “There is abnormal uptake again noted corresponding to right hilar and right paratracheal mediastinal lymphadenopathy. There is abnormal uptake again noted corresponding to nodular parenchymal opacities within the right lung, particularly within the right lower lobe.” </p>

<p>So his decision to wait to order an MRI for the other areas - only two of which are “new” and not even measurable, they’re just noted as “uptake” and make some treatment decision later made not the slightest bit of sense to me. It is clear to me based on the report that the original cancer is still very much active, and as such, the second line or something else needed to be done rather quickly. The other areas become somewhat immaterial given the enormity of the original lung cancer. </p>

<p>I guess it’s entirely possible that I have suddenly developed a second primary cancer, which in this case would be breast cancer, but I think he’s dead wrong to prioritize that, and even if he isn’t, he certainly is dead wrong to declare a cancer to be gone that is clearly anything but gone, according to the radiologist’s report.</p>

[latetoschool]

<p>Epistrophy, thank you for posting that, it’s hilarious. I had breakfast with friends this morning and they repeated the offer, and this time with two federal law enforcement officers present. LOLOL what are friends for :)</p>

[Kelowna]

<p>But isn’t M suppose to hep with pain???
And you have no pain…Thank God…</p>

[mafool]

<p>I believe it helps with both nausea and loss of appetite. (Ever hear of the “munchies?”)</p>

[abc44]

<p>THC pills are available and help with nausea. No need to smoke it.</p>

[NYMomof2]

<p>I’m sorry, LTS, I misunderstood. I thought that the oncologist was correct when he said that the original cancer was gone, but ignoring the fact that there were new suspicious areas elsewhere in the lungs. I didn’t realize that there was uptake at the site of the original cancer. And I didn’t know that you’d already completed the first course. </p>

<p>I’ll be thinking of you on Monday, as you begin the second course.</p>