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AND HERE WE GO
I had a scan on Sunday and the report was just posted. From a personal perspective, I would have to say it is not good news. Rather aggressive growth over a two month period. So damn. I am not surprised. My body and I have a rather tacit understanding. And what Ihave been hearing
I’VE BEEN ON MUTE
I’ve been on mute. I have been a little quiet, a situation my sons called attention to. They’re good that way, my boys. The truth is, I’ve got a lot on my mind. Trying to figure some stuff out, with a whole heck of a lot going on. First and foremost is the hackathon, and I shall provide a detailed accounting of progress made thus far soon.SWEET SIXTEEN
SWEET SIXTEEN. And.I didn’t even notice. Passed me right by like just another day. Which it was. Except for one minor detail: it has now been SIXTEEN ASTOUNDING YEARS since I was diagnosed with lung cancer. That’s right. It’s been tough at times, but also–more importantly–beyond amazing; this extended life of mine. CLUES BEFORE A MISSED DIAGNOSIS Clues before a missed diagnosis. When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers PARTEE…. | LIFE AND BREATH: OUTLIVING LUNG CANCER Yeah. This extrovert is transitioning to introvert. Just in time for winter. Not such a bad thing, really. There is something inherently solid about going it alone. And I am, well, ready. After a stint in the studio this afternoon, I took Kumo to the beach. Little boy was in LORLATINIB | LIFE AND BREATH: OUTLIVING LUNG CANCER First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, ( G1202R, S1206F and G1269A) Alice feels my cancer is stillprimarily
DIANE LEGG | LIFE AND BREATH: OUTLIVING LUNG CANCER Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of mypersonal heroes.
EZRA CALDWELL
In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop beforeyou die.”
LIFE AND BREATH: OUTLIVING LUNG CANCER This is defined as ‘relating to or affecting the functional tissue of an organ.’. And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function. ‘ Anteriorly and inferiorly ‘–front and back, top and bottom. ABOUT | LIFE AND BREATH: OUTLIVING LUNG CANCER Wowza! Fast forward to 2020. Somehow, someway, I am still here. I got more than five years out of lorlatinib but had to combine it with chemo last fall (carboplatin and alimta). Not I am in my fourth phase I clinical trial for a novel therapeutic that is mutation agnostic, call DS-1062. It is aAND HERE WE GO
I had a scan on Sunday and the report was just posted. From a personal perspective, I would have to say it is not good news. Rather aggressive growth over a two month period. So damn. I am not surprised. My body and I have a rather tacit understanding. And what Ihave been hearing
I’VE BEEN ON MUTE
I’ve been on mute. I have been a little quiet, a situation my sons called attention to. They’re good that way, my boys. The truth is, I’ve got a lot on my mind. Trying to figure some stuff out, with a whole heck of a lot going on. First and foremost is the hackathon, and I shall provide a detailed accounting of progress made thus far soon.SWEET SIXTEEN
SWEET SIXTEEN. And.I didn’t even notice. Passed me right by like just another day. Which it was. Except for one minor detail: it has now been SIXTEEN ASTOUNDING YEARS since I was diagnosed with lung cancer. That’s right. It’s been tough at times, but also–more importantly–beyond amazing; this extended life of mine. CLUES BEFORE A MISSED DIAGNOSIS Clues before a missed diagnosis. When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers PARTEE…. | LIFE AND BREATH: OUTLIVING LUNG CANCER Yeah. This extrovert is transitioning to introvert. Just in time for winter. Not such a bad thing, really. There is something inherently solid about going it alone. And I am, well, ready. After a stint in the studio this afternoon, I took Kumo to the beach. Little boy was in LORLATINIB | LIFE AND BREATH: OUTLIVING LUNG CANCER First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, ( G1202R, S1206F and G1269A) Alice feels my cancer is stillprimarily
DIANE LEGG | LIFE AND BREATH: OUTLIVING LUNG CANCER Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of mypersonal heroes.
EZRA CALDWELL
In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop beforeyou die.”
JOHNNY UP AND BIOPSY IS A GO CT BIOPSY LUNG (LEFT) - Details TECHNIQUE: Diagnostic CT BIOPSY LUNG (LEFT) INDICATION: Metastatic lung cancer Consent: The nature of the procedure, including its risks, benefits and alternatives was explained to the patient who understood and gave consent. TECHNIQUE: The patient was placed prone on the CT table. Targeted preprocedure CT images demonstrated a dominant ABOUT | LIFE AND BREATH: OUTLIVING LUNG CANCER Wowza! Fast forward to 2020. Somehow, someway, I am still here. I got more than five years out of lorlatinib but had to combine it with chemo last fall (carboplatin and alimta). Not I am in my fourth phase I clinical trial for a novel therapeutic that is mutation agnostic, call DS-1062. It is a MAY | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER Mild nodularity along the right minor fissure measuring up to 5 mm on image 268 of series 4 is stable when compared to 1/5/2021 and likely represents a fissural lymph node. Other small nodules along the right major fissure are stable. There is a 3 mm nodule in the right upper lobe on image 148 of series 4, stable back to 1/5/2021. BALANCE | LIFE AND BREATH: OUTLIVING LUNG CANCER Fried clams at Woodman’s in Essex with Bill. A weekend in Maine with Annie. Aperol Spritz’, oysters, great wine and lemon linguine at Marc’s. Dinner, dog walks and blood draws (really) with Diane. And a visit from my friend Bradshaw–who drove eight hours to get here–along with his pooch Lulu. Balm for an extrovert’s soul.THE NUMBERS ARE IN
The numbers are in. What you are looking at are my before and after scans. Evidently I was mistaken about any previous scans after starting the trial–this is my first one. Out the door goes the fever theory (maybe–I kinda like the image of the cancer being incinerated). At any rate, as I am on my back while in the scanner,that is my left
DIANE LEGG AND THE PMC Our annual Pan Mass Challenge (PMC), an annual bike-a-thon across Massachusetts, benefiting lung cancer research at Dana Farber Cancer Institute (DFCI), is no different. Usually the first week of August, Dave & I join more than 6700 cyclists and 4000 volunteers to raise money for life-saving cancer research and treatment at Dana Farber. JUST IN CASE ANYONE THINKS Just in case anyone thinks. for even a minute that I’m not having a great time. That’s me, yukking it up with my friend Bill Burke. Photo by my pal Annie Steuernagel. Three inoculated artists on a Sunday. Looking at photos before moving on to oysters. Ain’t lifegetting grander.
THE WILD BLUE YONDER So it's official. Another one (therapy) bites the dust. I spoke to Jessica Lin this morning and I shall not be going back on binimetinib. Hopefully the ocular toxicity I have experienced is reversible. I'm thinking it is. However, were the retinopathy to progress--as it likely would should I continue on any dose of binimetinib--my GUT PUNCHED. BUT NOT DOWN AND NOT OUT. Gut punched. But not down and not out. Cancer, you’re an asshole. Another taken. Too young, so loved–a zillion friends, her husband, three children and an extended family left grieving. A punch in the heart to the entire community. Goddamn, it’s hard. So DIANE IS BACK IN TOWN! The photo is from an event Diane and I did a couple of years ago for Blueprint Medicines. Back in the day, when we could still do events. I moved to Amesbury, MA in December of 2019. I was escaping a bad housing situation (landlords, oh landlords) and also moving across thestreet from one
LIFE AND BREATH: OUTLIVING LUNG CANCER This is defined as ‘relating to or affecting the functional tissue of an organ.’. And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function. ‘ Anteriorly and inferiorly ‘–front and back, top and bottom.AND HERE WE GO
I had a scan on Sunday and the report was just posted. From a personal perspective, I would have to say it is not good news. Rather aggressive growth over a two month period. So damn. I am not surprised. My body and I have a rather tacit understanding. And what Ihave been hearing
MAY | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER Mild nodularity along the right minor fissure measuring up to 5 mm on image 268 of series 4 is stable when compared to 1/5/2021 and likely represents a fissural lymph node. Other small nodules along the right major fissure are stable. There is a 3 mm nodule in the right upper lobe on image 148 of series 4, stable back to 1/5/2021.I’VE BEEN ON MUTE
I’ve been on mute. I have been a little quiet, a situation my sons called attention to. They’re good that way, my boys. The truth is, I’ve got a lot on my mind. Trying to figure some stuff out, with a whole heck of a lot going on. First and foremost is the hackathon, and I shall provide a detailed accounting of progress made thus far soon. PARTEE…. | LIFE AND BREATH: OUTLIVING LUNG CANCER Yeah. This extrovert is transitioning to introvert. Just in time for winter. Not such a bad thing, really. There is something inherently solid about going it alone. And I am, well, ready. After a stint in the studio this afternoon, I took Kumo to the beach. Little boy was inSHP2 AND LORLATINIB
Posts about SHP2 and lorlatinib written by linnea11. “I came to live out loud.” Emile Zola. And so I did. But over the past week or so I have been living quietly. CLUES BEFORE A MISSED DIAGNOSIS Clues before a missed diagnosis. When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers LORLATINIB | LIFE AND BREATH: OUTLIVING LUNG CANCER First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, ( G1202R, S1206F and G1269A) Alice feels my cancer is stillprimarily
EZRA CALDWELL
In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop beforeyou die.”
GROUND GLASS OPACITIES The ground glass opacity in the inferior lingula has also increased.”. Lotta lotta ground glass being tossed around. However, the final impression is: “These findings may represent mild increase in minimally invasive adenocarcinoma in these regions”. Minimally invasive adenocarcinoma is the new term for BAC, or broncioaveolarcarcinoma.
LIFE AND BREATH: OUTLIVING LUNG CANCER This is defined as ‘relating to or affecting the functional tissue of an organ.’. And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function. ‘ Anteriorly and inferiorly ‘–front and back, top and bottom.AND HERE WE GO
I had a scan on Sunday and the report was just posted. From a personal perspective, I would have to say it is not good news. Rather aggressive growth over a two month period. So damn. I am not surprised. My body and I have a rather tacit understanding. And what Ihave been hearing
MAY | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER Mild nodularity along the right minor fissure measuring up to 5 mm on image 268 of series 4 is stable when compared to 1/5/2021 and likely represents a fissural lymph node. Other small nodules along the right major fissure are stable. There is a 3 mm nodule in the right upper lobe on image 148 of series 4, stable back to 1/5/2021.I’VE BEEN ON MUTE
I’ve been on mute. I have been a little quiet, a situation my sons called attention to. They’re good that way, my boys. The truth is, I’ve got a lot on my mind. Trying to figure some stuff out, with a whole heck of a lot going on. First and foremost is the hackathon, and I shall provide a detailed accounting of progress made thus far soon. PARTEE…. | LIFE AND BREATH: OUTLIVING LUNG CANCER Yeah. This extrovert is transitioning to introvert. Just in time for winter. Not such a bad thing, really. There is something inherently solid about going it alone. And I am, well, ready. After a stint in the studio this afternoon, I took Kumo to the beach. Little boy was inSHP2 AND LORLATINIB
Posts about SHP2 and lorlatinib written by linnea11. “I came to live out loud.” Emile Zola. And so I did. But over the past week or so I have been living quietly. CLUES BEFORE A MISSED DIAGNOSIS Clues before a missed diagnosis. When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers LORLATINIB | LIFE AND BREATH: OUTLIVING LUNG CANCER First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, ( G1202R, S1206F and G1269A) Alice feels my cancer is stillprimarily
EZRA CALDWELL
In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop beforeyou die.”
GROUND GLASS OPACITIES The ground glass opacity in the inferior lingula has also increased.”. Lotta lotta ground glass being tossed around. However, the final impression is: “These findings may represent mild increase in minimally invasive adenocarcinoma in these regions”. Minimally invasive adenocarcinoma is the new term for BAC, or broncioaveolarcarcinoma.
ABOUT | LIFE AND BREATH: OUTLIVING LUNG CANCER Wowza! Fast forward to 2020. Somehow, someway, I am still here. I got more than five years out of lorlatinib but had to combine it with chemo last fall (carboplatin and alimta). Not I am in my fourth phase I clinical trial for a novel therapeutic that is mutation agnostic, call DS-1062. It is a APRIL | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER Balance. Posted on April 18, 2021 | 7 comments. I cannot do cancer all the time. Given the fact that I never intended to spend a moment with the big C, this is not so remarkable. However, cancer has a way of screaming ME ME ME. Ignoring it is not an option. Seeing it lurking over in the corner but carrying on as if it is not in the room is. BALANCE | LIFE AND BREATH: OUTLIVING LUNG CANCER Fried clams at Woodman’s in Essex with Bill. A weekend in Maine with Annie. Aperol Spritz’, oysters, great wine and lemon linguine at Marc’s. Dinner, dog walks and blood draws (really) with Diane. And a visit from my friend Bradshaw–who drove eight hours to get here–along with his pooch Lulu. Balm for an extrovert’s soul.SWEET SIXTEEN
SWEET SIXTEEN. And.I didn’t even notice. Passed me right by like just another day. Which it was. Except for one minor detail: it has now been SIXTEEN ASTOUNDING YEARS since I was diagnosed with lung cancer. That’s right. It’s been tough at times, but also–more importantly–beyond amazing; this extended life of mine. MARCH | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER Posted on March 19, 2021 | 4 comments. It has been almost two years since I began working for Medidata as a paid consultant. It is a task that I find stimulating, gratifying and rewarding. Work that I am proud of. Alicia Staley, a cancer survivor herself, created the Patient Design Team in 2019 and brought me on board.THE NUMBERS ARE IN
The numbers are in. What you are looking at are my before and after scans. Evidently I was mistaken about any previous scans after starting the trial–this is my first one. Out the door goes the fever theory (maybe–I kinda like the image of the cancer being incinerated). At any rate, as I am on my back while in the scanner,that is my left
JUST IN CASE ANYONE THINKS Just in case anyone thinks. for even a minute that I’m not having a great time. That’s me, yukking it up with my friend Bill Burke. Photo by my pal Annie Steuernagel. Three inoculated artists on a Sunday. Looking at photos before moving on to oysters. Ain’t lifegetting grander.
THEY JUST KEEP COMING. They just keep coming. For months now, every few weeks, they arrive. A gorgeous bouquet of flowers. Attached, a simple note. This time; ‘Love to Linnea.’. I have queried the usual suspects and although several have responded by saying they would like to take credit, they cannot. It is a mystery, a wonder, a simple glory. THE WILD BLUE YONDER So it's official. Another one (therapy) bites the dust. I spoke to Jessica Lin this morning and I shall not be going back on binimetinib. Hopefully the ocular toxicity I have experienced is reversible. I'm thinking it is. However, were the retinopathy to progress--as it likely would should I continue on any dose of binimetinib--my DIANE IS BACK IN TOWN! The photo is from an event Diane and I did a couple of years ago for Blueprint Medicines. Back in the day, when we could still do events. I moved to Amesbury, MA in December of 2019. I was escaping a bad housing situation (landlords, oh landlords) and also moving across thestreet from one
LIFE AND BREATH: OUTLIVING LUNG CANCER This is defined as ‘relating to or affecting the functional tissue of an organ.’. And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function. ‘ Anteriorly and inferiorly ‘–front and back, top and bottom.SWEET SIXTEEN
SWEET SIXTEEN. And.I didn’t even notice. Passed me right by like just another day. Which it was. Except for one minor detail: it has now been SIXTEEN ASTOUNDING YEARS since I was diagnosed with lung cancer. That’s right. It’s been tough at times, but also–more importantly–beyond amazing; this extended life of mine. CLUES BEFORE A MISSED DIAGNOSIS Clues before a missed diagnosis. When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers OH GIRL | LIFE AND BREATH: OUTLIVING LUNG CANCER Alice said she was glad we’d decided to begin treatment. And then, up to the eighth floor and infusion, where I was immediately recognized by a phlebotomist. That’s what happens when you’re a lifer. Some saline, ten minutes of carboplatin, more saline and thenthirty minutes of
LORLATINIB | LIFE AND BREATH: OUTLIVING LUNG CANCERALK GENE IN LUNG CANCERALK LUNG CANCERGOD GIVES LIFE AND BREATHLIFE BREATH MEANINGLIFE BREATH SYSTEMALK LUNG CANCER DRUGS First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, ( G1202R, S1206F and G1269A) Alice feels my cancer is stillprimarily
PAUL KALANITHI
If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should.Once I picked it up I found it difficult to put down. Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately DIANE LEGG | LIFE AND BREATH: OUTLIVING LUNG CANCER Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of mypersonal heroes.
ROS1 MUTATIONS NSCLC A new mutation on the block: ROS1. There is a newly identified oncogenic mutation in NSCLC, ROS1. Although present in but a small percentage of patients, its discovery represents an additional breakthrough in understanding what ‘drives’ individual cancers. Better yet, crizotinib (Xalkori) would appear to be a potent inhibitorof ROS1.
EZRA CALDWELL
In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop beforeyou die.”
DR. ALICE SHAW NOVARTIS Posts about Dr. Alice Shaw Novartis written by linnea11. Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology. LIFE AND BREATH: OUTLIVING LUNG CANCER This is defined as ‘relating to or affecting the functional tissue of an organ.’. And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function. ‘ Anteriorly and inferiorly ‘–front and back, top and bottom.SWEET SIXTEEN
SWEET SIXTEEN. And.I didn’t even notice. Passed me right by like just another day. Which it was. Except for one minor detail: it has now been SIXTEEN ASTOUNDING YEARS since I was diagnosed with lung cancer. That’s right. It’s been tough at times, but also–more importantly–beyond amazing; this extended life of mine. CLUES BEFORE A MISSED DIAGNOSIS Clues before a missed diagnosis. When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers OH GIRL | LIFE AND BREATH: OUTLIVING LUNG CANCER Alice said she was glad we’d decided to begin treatment. And then, up to the eighth floor and infusion, where I was immediately recognized by a phlebotomist. That’s what happens when you’re a lifer. Some saline, ten minutes of carboplatin, more saline and thenthirty minutes of
LORLATINIB | LIFE AND BREATH: OUTLIVING LUNG CANCERALK GENE IN LUNG CANCERALK LUNG CANCERGOD GIVES LIFE AND BREATHLIFE BREATH MEANINGLIFE BREATH SYSTEMALK LUNG CANCER DRUGS First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, ( G1202R, S1206F and G1269A) Alice feels my cancer is stillprimarily
PAUL KALANITHI
If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should.Once I picked it up I found it difficult to put down. Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately DIANE LEGG | LIFE AND BREATH: OUTLIVING LUNG CANCER Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of mypersonal heroes.
ROS1 MUTATIONS NSCLC A new mutation on the block: ROS1. There is a newly identified oncogenic mutation in NSCLC, ROS1. Although present in but a small percentage of patients, its discovery represents an additional breakthrough in understanding what ‘drives’ individual cancers. Better yet, crizotinib (Xalkori) would appear to be a potent inhibitorof ROS1.
EZRA CALDWELL
In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop beforeyou die.”
DR. ALICE SHAW NOVARTIS Posts about Dr. Alice Shaw Novartis written by linnea11. Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology. MAY | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER Mild nodularity along the right minor fissure measuring up to 5 mm on image 268 of series 4 is stable when compared to 1/5/2021 and likely represents a fissural lymph node. Other small nodules along the right major fissure are stable. There is a 3 mm nodule in the right upper lobe on image 148 of series 4, stable back to 1/5/2021. 05 | JUNE | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER I posted this on Facebook yesterday: How to explain that you feel extraordinarily fortunate (6th phase I clinical trial) while also feeling incredibly fucked (6th phase I clinical trial).There are no words.. But I shall make an attempt. First, a description of NCT04292119 from My Cancer Genome.. Secondly, the transcript of an interview (conducted by ALK Positive, who also provided funding for TNO155 AND LORLATINIB I posted this on Facebook yesterday: How to explain that you feel extraordinarily fortunate (6th phase I clinical trial) while also feeling incredibly fucked (6th phase I clinical trial). There are no words. But I shall make an attempt. First, a description of NCT04292119 from My Cancer Genome. Secondly, the transcript of an interview (conducted SEPTEMBER | 2020 | LIFE AND BREATH: OUTLIVING LUNG CANCER Whatever particulate is in our immediate environment will be inhaled. Essentially, anyone who breathes is at risk for lung cancer. That is each and everyone of us. 2020 should be the year that we all stop taking the next breath as a given. BALANCE | LIFE AND BREATH: OUTLIVING LUNG CANCER Fried clams at Woodman’s in Essex with Bill. A weekend in Maine with Annie. Aperol Spritz’, oysters, great wine and lemon linguine at Marc’s. Dinner, dog walks and blood draws (really) with Diane. And a visit from my friend Bradshaw–who drove eight hours to get here–along with his pooch Lulu. Balm for an extrovert’s soul. MAY | 2020 | LIFE AND BREATH: OUTLIVING LUNG CANCER Worn and worn again. Posted on May 30, 2020 | 5 comments. When I was younger I hated losing anything. I feel this had something to do with my high level of anxiety—and a fear of the unknown. I actually preferred breaking an object to losing it—because the outcome was not an uncertainty. Life has dealt me a hefty dose of apprehensivescenarios.
JUST A LITTLE DOCUMENTARY I have now been in phase I clinical trials for two Pfizer drugs---crizotinib and lorlatinib (Xalkori and Lorbrena). A few weeks ago I travelled to La Jolla for a CNN produced documentary. Perks of this project included spending time with rock star researcherPAUL KALANITHI
If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should.Once I picked it up I found it difficult to put down. Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately WHEN YOU KNOW YOUR LIFE IS FUCKING SPECIAL When you know your life is fucking special. It’s a Friday night, and you are about to prepare your dinner, compliments of Hello Fresh and one of your oncologists. Next week’s box has been paid for by a scientist who helped discover the first molecule you were in clinicaltrial for.
DR. ALICE SHAW NOVARTIS Posts about Dr. Alice Shaw Novartis written by linnea11. Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology. LIFE AND BREATH: OUTLIVING LUNG CANCER This is defined as ‘relating to or affecting the functional tissue of an organ.’. And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function. ‘ Anteriorly and inferiorly ‘–front and back, top and bottom.SWEET SIXTEEN
SWEET SIXTEEN. And.I didn’t even notice. Passed me right by like just another day. Which it was. Except for one minor detail: it has now been SIXTEEN ASTOUNDING YEARS since I was diagnosed with lung cancer. That’s right. It’s been tough at times, but also–more importantly–beyond amazing; this extended life of mine. CLUES BEFORE A MISSED DIAGNOSIS Clues before a missed diagnosis. When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers OH GIRL | LIFE AND BREATH: OUTLIVING LUNG CANCER Alice said she was glad we’d decided to begin treatment. And then, up to the eighth floor and infusion, where I was immediately recognized by a phlebotomist. That’s what happens when you’re a lifer. Some saline, ten minutes of carboplatin, more saline and thenthirty minutes of
LORLATINIB | LIFE AND BREATH: OUTLIVING LUNG CANCERALK GENE IN LUNG CANCERALK LUNG CANCERGOD GIVES LIFE AND BREATHLIFE BREATH MEANINGLIFE BREATH SYSTEMALK LUNG CANCER DRUGS First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, ( G1202R, S1206F and G1269A) Alice feels my cancer is stillprimarily
PAUL KALANITHI
If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should.Once I picked it up I found it difficult to put down. Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately DIANE LEGG | LIFE AND BREATH: OUTLIVING LUNG CANCER Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of mypersonal heroes.
ROS1 MUTATIONS NSCLC A new mutation on the block: ROS1. There is a newly identified oncogenic mutation in NSCLC, ROS1. Although present in but a small percentage of patients, its discovery represents an additional breakthrough in understanding what ‘drives’ individual cancers. Better yet, crizotinib (Xalkori) would appear to be a potent inhibitorof ROS1.
EZRA CALDWELL
In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop beforeyou die.”
DR. ALICE SHAW NOVARTIS Posts about Dr. Alice Shaw Novartis written by linnea11. Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology. LIFE AND BREATH: OUTLIVING LUNG CANCER This is defined as ‘relating to or affecting the functional tissue of an organ.’. And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function. ‘ Anteriorly and inferiorly ‘–front and back, top and bottom.SWEET SIXTEEN
SWEET SIXTEEN. And.I didn’t even notice. Passed me right by like just another day. Which it was. Except for one minor detail: it has now been SIXTEEN ASTOUNDING YEARS since I was diagnosed with lung cancer. That’s right. It’s been tough at times, but also–more importantly–beyond amazing; this extended life of mine. CLUES BEFORE A MISSED DIAGNOSIS Clues before a missed diagnosis. When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers OH GIRL | LIFE AND BREATH: OUTLIVING LUNG CANCER Alice said she was glad we’d decided to begin treatment. And then, up to the eighth floor and infusion, where I was immediately recognized by a phlebotomist. That’s what happens when you’re a lifer. Some saline, ten minutes of carboplatin, more saline and thenthirty minutes of
LORLATINIB | LIFE AND BREATH: OUTLIVING LUNG CANCERALK GENE IN LUNG CANCERALK LUNG CANCERGOD GIVES LIFE AND BREATHLIFE BREATH MEANINGLIFE BREATH SYSTEMALK LUNG CANCER DRUGS First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, ( G1202R, S1206F and G1269A) Alice feels my cancer is stillprimarily
PAUL KALANITHI
If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should.Once I picked it up I found it difficult to put down. Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately DIANE LEGG | LIFE AND BREATH: OUTLIVING LUNG CANCER Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of mypersonal heroes.
ROS1 MUTATIONS NSCLC A new mutation on the block: ROS1. There is a newly identified oncogenic mutation in NSCLC, ROS1. Although present in but a small percentage of patients, its discovery represents an additional breakthrough in understanding what ‘drives’ individual cancers. Better yet, crizotinib (Xalkori) would appear to be a potent inhibitorof ROS1.
EZRA CALDWELL
In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop beforeyou die.”
DR. ALICE SHAW NOVARTIS Posts about Dr. Alice Shaw Novartis written by linnea11. Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology. MAY | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER Mild nodularity along the right minor fissure measuring up to 5 mm on image 268 of series 4 is stable when compared to 1/5/2021 and likely represents a fissural lymph node. Other small nodules along the right major fissure are stable. There is a 3 mm nodule in the right upper lobe on image 148 of series 4, stable back to 1/5/2021. 05 | JUNE | 2021 | LIFE AND BREATH: OUTLIVING LUNG CANCER I posted this on Facebook yesterday: How to explain that you feel extraordinarily fortunate (6th phase I clinical trial) while also feeling incredibly fucked (6th phase I clinical trial).There are no words.. But I shall make an attempt. First, a description of NCT04292119 from My Cancer Genome.. Secondly, the transcript of an interview (conducted by ALK Positive, who also provided funding for TNO155 AND LORLATINIB I posted this on Facebook yesterday: How to explain that you feel extraordinarily fortunate (6th phase I clinical trial) while also feeling incredibly fucked (6th phase I clinical trial). There are no words. But I shall make an attempt. First, a description of NCT04292119 from My Cancer Genome. Secondly, the transcript of an interview (conducted SEPTEMBER | 2020 | LIFE AND BREATH: OUTLIVING LUNG CANCER Whatever particulate is in our immediate environment will be inhaled. Essentially, anyone who breathes is at risk for lung cancer. That is each and everyone of us. 2020 should be the year that we all stop taking the next breath as a given. BALANCE | LIFE AND BREATH: OUTLIVING LUNG CANCER Fried clams at Woodman’s in Essex with Bill. A weekend in Maine with Annie. Aperol Spritz’, oysters, great wine and lemon linguine at Marc’s. Dinner, dog walks and blood draws (really) with Diane. And a visit from my friend Bradshaw–who drove eight hours to get here–along with his pooch Lulu. Balm for an extrovert’s soul. MAY | 2020 | LIFE AND BREATH: OUTLIVING LUNG CANCER Worn and worn again. Posted on May 30, 2020 | 5 comments. When I was younger I hated losing anything. I feel this had something to do with my high level of anxiety—and a fear of the unknown. I actually preferred breaking an object to losing it—because the outcome was not an uncertainty. Life has dealt me a hefty dose of apprehensivescenarios.
JUST A LITTLE DOCUMENTARY I have now been in phase I clinical trials for two Pfizer drugs---crizotinib and lorlatinib (Xalkori and Lorbrena). A few weeks ago I travelled to La Jolla for a CNN produced documentary. Perks of this project included spending time with rock star researcherPAUL KALANITHI
If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should.Once I picked it up I found it difficult to put down. Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately WHEN YOU KNOW YOUR LIFE IS FUCKING SPECIAL When you know your life is fucking special. It’s a Friday night, and you are about to prepare your dinner, compliments of Hello Fresh and one of your oncologists. Next week’s box has been paid for by a scientist who helped discover the first molecule you were in clinicaltrial for.
DR. ALICE SHAW NOVARTIS Posts about Dr. Alice Shaw Novartis written by linnea11. Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology. LIFE AND BREATH: OUTLIVING LUNG CANCER for the terminally optimisticSkip to content
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FEELING…
Posted on March 9, 2020| 8 comments
Vulnerable. And not liking it one bit. Kind of a perfect storm, this COVID-19 coming at the same time I’m getting infusions. Age 60, compromised lung and immune function, intreatment. Damn.
And I have been uncharacteristically depressed. Obviously some of it could be situational but I’ve been through many a storm and always managed to keep my head above water. I’m super fatigued and those mouth sores are flaring up again, but hey, my breathing continues to improve. That alone should be cause for good cheer. So what gives? I finally contacted Dr. Lin today to inquire if there was any possibility that mood dissonance could be a side effect of DS1062-a. Unlikely, as it is not known to impact cognition. However, she did have a thought. I have been pre-dosing with mega quantities of steroids. Maybe, just maybe, this black mood of mine is related to that roller coaster effect. Next go around we will see if we can skip the mid infusion dose and after that, maybe back off on the steroids just prior to infusion aswell.
I miss happy me. I _need_ happy me to get through this challengingtime.
Sadness, begone.
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Posted in Uncategorized Tagged cancer and depression, COVID-19
, DS-1062a
, mucositis
, stage IV lung cancer, steroids
and depression
TWO DOWN
Posted on March 6, 2020| 13 comments
Infusion number two of DS-1062a went off yesterday with only a minor hitch. Due to the profusion of side effects post one (my hair starting falling out a few days ago as well) it was determined that going down in dose was probably a good choice. In addition, I took 40 mg of dexamethasone the evening before and morning of and 20 mg more just prior to infusion, plus 1080 MG of fexofenadine HCL. Infusion was slowed down to three hours and half way through I was given an infusion of Benadryl–50 mg. My throat got a little bit sore but did not swell up and I had no rash. The only issue was the over the top restless leg/crawlies from the Benadryl–I thought it would drive me out of my mind. JesY Wittebort had sent me some nifty leg compressors to help with the restless leg, but they just moved the sensation up to my arms. Hopefully I will be able to forgo Benadryl entirely next time–I wonder if I am part of the population who experiences paradoxicalexcitation
.
Whatever it is, I don’t want to feel that way again. However, given the lack of an infusion reaction the day was ruled a success. Now I am at home resting, both out of necessity and also out of avoidance. I was thinking of going to the movies tonight but Alice and I spoke by phone and she feels it prudent that I keep myself out of harm’s way (crowds) as much as possible over the coming weeks. Introversion is not my nature but I really do not want to be exposed to COVID-19, a potential devastation for someone with compromised lung and immune function. I have a tall stack of unread books and my sons are getting me hooked up with Netflix so that I have diversion. And Diane continues to reach out to make certain I don’t need anything–from the store or otherwise. So I am in good hands. Spring, clearer breather, making of art—these are the things I am focusing on now. I did get to the studio the day prior to infusion and I made myself walk the five flights up rather than taking the freight elevator. Up, it’s only up from here.xo
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Posted in UncategorizedTagged Benadryl ,
COVID-19 ,
dexamethasone ,
DS-1062a , fexofenadine, paradoxical
excitation
JUST A LITTLE DOCUMENTARY Posted on March 3, 2020| 15 comments
I have now been in phase I clinical trials for two Pfizer drugs—crizotinib and lorlatinib (Xalkori and Lorbrena). A few weeks ago I travelled to La Jolla for a CNN produced documentary. Perks of this project included spending time with rock star researcher TedJohnson
as well as a tour of the Pfizer Labs. And of course anytime I get to see the sun setting over the Pacific ocean, that’s a plus as well. As for the documentary, it speaks for itself. Give it a little gander. Pfizer, thanks for letting me represent. And for keeping me at thisparty.
xo
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Posted in UncategorizedTagged crizotinb ,
Lorbrena , lorlatinib, Pfizer
, Ted Johnson
, Xalkori
TAKING A BREATHER FROM BEING BRAVE Posted on March 2, 2020| 12 comments
The last few days have been tough. I’ve now got ulcers all throughout my mouth and down my esophagus. My sinuses and ear canals hurt as well and it is my guess that anywhere I have a mucous membranehas been affected.
This has impacted both my appetite and my ability to eat. Basically I am getting down whatever I am able to and a case of powdered ensure arrived on my doorstep yesterday. I had been told that hair loss was a possibility and three days ago it started coming out in handfuls. I’m rocking the plucked chicken look now and my follicles are all hyper sensitive. This afternoon Diane is taking me to a friend of hers for a buzz cut—somehow more dignified than heading to Super Cuts. My usual joie de vivre and can do spirit has taken a (temporary) hit as well. I’ve spent a lot of time on the couch doing nothing, just literally riding this wave until it’s over; the wave beingdepression.
Even warriors have their down days–this shit gets old. On Thursday I will have my second infusion and have to hope that by pre-dosing with steroids and Benadryl we are able to avoid an infusion reaction. My team will be on high alert with epipens at the ready. In the meantime I am trying both to be gentle with myself but also to push forward. Nobody said this would be easy. I just didn’t think itwould be this hard.
But…(because I do like to end on a positive note) my breathing really is better. That is a wonderful thing and (if I believe my own pep talks) worth wading through. I can do this.I can. And I will.
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Posted in UncategorizedTagged DS-1062a ,
mucositis , phase I
clinical trial side effects,
phase I clinical trials, side
effects of cancer treatment,
stage IV lung cancer WHAT CAN BE LIVED WITH AND WHAT CANNOT Posted on February 25, 2020| 13 comments
I’m not gonna lie. Mucositis might be the most unpleasant side effect I have dealt with yet. Currently I have an ulcer on the side of my tongue, on both inner cheeks, and covering the back of my throat and trailing down my esophagus. Excess mucous that causes me to gag and choke is part of this not so pretty picture. Sucks and certainly has a negative impact on quality of life. However, and this is a big however, my breathing has improved. Markedly. I can’t live if I can’t breathe. These side effects blow but there aren’t going to kill me. So there you go. The things we do to stay alive. And I have already noted that I am willing to do just about anything to stay at thisparty.
Even the stuff that’s hard to swallow. Pun intended.xo
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Posted in UncategorizedTagged DS-1062a ,
mucositis , side
effects of cancer treatment,
side effects of DS-1062a, stage
IV lung cancer
GAINS AND LOSSES
Posted on February 22, 2020| 11
comments
I am currently dealing with a whole new set of treatment side effects. Fatigue, persistent nausea, mucositis,
and weight loss.
Weight gain is a side effect of lorlatinib, and over the past few months my degree of activity had slowed down significantly. As a result, I was heavier than I ever have been aside from when I was pregnant. That extra heft around my belly is proving to be a good thing, as I dropped five pounds the first week of treatment with DS-1062a. Nice to know I have a little buffer. Washing out of lorlatinib may be part of the reason I am so fatigued. However, there have been some good changes as well. The cadence of my speech has sped up noticeably–even Alice commented that I am talking faster now (adios John Wayne). I had been on lorlatinib since May of 2014—likely longer than almost anyone else. Two years ago I began to experience what I referred to as long term side effects. Small blemishes would quickly become gaping holes which simply would not heal. Crusting is a known side effect of lorlatinib and that was the primary issue, as those crusts seemed to burrow into my epidermis. My oldest son, who I visited over Christmas, later shared with me that my skin looked like that of a drug addict–that it appeared I was rubbing my flesh away. My nails were also an issue, particularly on my feet. Nine out of ten toenails became ingrown and even surgery would not make themstraighten out.
Anyway, a week after my last dose of lorlatinib both my skin and my nails began to heal. I shall be left with some scars but my self esteem is improving as well–it’s no fun walking around with open wounds on your face. Best of all is the impact on my cognition. Suddenly my thoughts are more dense. The best analogy would be thread count–I have gone from 200 to 500 in two weeks. So life goes on, one set of side effects traded for another. However I am reveling in the joy of clear thinking, clear skin and the potential of an extended horizon.xo
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Posted in UncategorizedTagged mucositis ,
side effects DS-1062a, side
effects lorlatinib
, stage
IV lung cancer
, washing
out of cancer therapy BILLING: RESEARCH VERSUS STAND OF CARE Posted on February 20, 2020| 2 comments
I was billed for my recent biopsy but evidently that was in error and charges will be reversed. On Tuesday I sat down with my research coordinator and we went through the procedures one by one to break down what was billed to insurance, and what was covered by thesponsor.
So here goes. Considered standard of care (and therefore billable) arethese items:
PHYSICALS
SKIN EXAM
BLOOD WORK THAT IS CBC (COMPLETE BLOOD COUNT) WITH DIFF ORDIFFERENTIAL
BLOOD WORK THAT IS COMPREHENSIVE METABOLIC CT SCANS THAT FALL WITHIN SOC SCHEDULE (EVERY TWELVE WEEKS) And these are the procedures that are considered research only and which are expenses picked up by the sponsor of the trial:EYE EXAMS
ECHOCARDIOGRAM
EKG
PHARMACOKINETICS OR PKS (ALL OTHER LABWORK)URINALYSIS
CT SCANS DONE MORE FREQUENTLY THAN EVERY TWELVE WEEKSRECIST MEASUREMENTS
TUMOR BIOPSY
DRUG
And so it is not as bad as I imagined per expenses expected to be covered by me, the participant. However, the language in the consent form is exceedingly vague (Standard of care versus research) and I would urge anyone participating in a clinical trial to have it spelledout ahead of time.
I would also point out that my travel, lodging (back to back late evenings with early morning appointments the next day sometimes make this necessary), meals and parking are still picked up by me. This is no small potatoes in a trial that had me at the hospital four out of seven days last week. In addition, should I suffer a side effect related to trial, any subsequent treatment shall be billed to insurance: ‘_The treating hospital will offer you the care needed to treat injuries directly resulting from taking part in this research. These treatments will be billed to your insurance company. You will be responsible for deductibles and co-payments. There are no plans to pay you or give you compensation for your injury_.’ It is good to know that the biopsy was not correctly billed to me which would have been insult to injury. However I am still angry that I am required to effectively donate tissue from an exceedingly invasive procedure (not once, but twice–and they had asked for a voluntary third biopsy). Evidently a small core sample was obtained for MGH and it was sent to pathology confirming cancer cells were present (duh). However, there is not enough tissue to, say, make mouse models. Or to run genetic sequencing with tissue to spare should it be needed later. Both of those things would be helpful in a complicated case like mine–three known secondary acquired mutations conferring resistance. The sponsor got the bulk of the tissue–any effort to acquire more would have been considered risky to me. In the consent form I signed it is acknowledged that performing a biopsy comes with associated risks including this little nugget_ “There is risk of regional spread of cancer cells when the needle is removed from your tumor. Although very rare, there is a risk of serious complications (such as pneumothorax)…and death.”_ Yeah, death does sound serious. But so does regional spread of cancer cells. Essentially the sponsor is paying for a piece of me, not an optional piece, but a required piece. I am glad that there is not associated financial burden but the physical burden is still huge. And if someone is going to be harvesting my tissue, well then by all means they should share that bounty with me, so that I too can benefit frommy sacrifice.
Bottom line, ask questions, lots of questions. Of course it is difficult to ask what you don’t know, and even though this is my fourth trial, I am still learning. I would also suggest that consent forms could be much better at spelling things out–as they stand now, there are just too many vagaries. Ultimately, I want some of my tissue. And a net zero balance per my expenses related to participation. I do not feel this is too much to ask. In an ideal world I would also be compensated for my time. Just as astronauts are.xo
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Posted in UncategorizedTagged Biospies ,
expenses associated with participation in clinical trials,
risks associated with participation in clinical trials,
stage IV lung cancer, stand of
care versus research GETTING IT RIGHT ABOUT RESEARCH Posted on February 17, 2020| 8 comments
Medical Research (capital M, capital R) is often the star when cancer patients talk about their continuing survival. I’ve sung the praises of research again and again. Without it, I’dbe dead.
However, the part of the story that often gets glossed over is that medical research requires human subjects. And that particularly in phase I trials (designed to assess safety not efficacy), these human subjects are taking on quite a lot. MTD, or maximum tolerable dose, is determined in phase I trials. You know how? Someone experiences side effects that are not tolerable. Tolerable is a word with a lot of latitude. As I begin my fourth phase I clinical trial, I can tell you that it takes both courage and an ability to navigate uncertainty and discomfort that frankly, manydon’t possess.
Clinical trial participants are the unpaid labor force that moves experimental therapeutics to market. We take on enormous risk as well as additional expense. Our skin in the game is the real deal, from blood draws (thirty teaspoons at cycle one this time) and biopsies, we provide the necessary specimens. We agree to take drugs that no humans have taken before. In exchange, if we are lucky, our lives might be extended—maybe even long enough to enter yet another trial. Because frankly, if trials are not a one and done, then they become a literal way of life. I have now spent a decade, or one sixth of my life, as a clinical trial participant. That’s a lot of heavy dutycommunity service.
However, it wasn’t altruism but rather a desire to stay alive that led me to my participation. That in no way lessens the contribution though. Veterans of combat are honored for their service, not theirmotivations.
If we want to have clinical trial participants recognized as partners rather than merely participants, we need to change the way we talk about trials. Don’t just thank medical research, acknowledge as well the contribution of those individuals who ‘volunteer’ their time, tissue and finances. Recognize that medical research simply could not happen without these sacrifices. Next time you express your gratitude to medical research, try saying this instead: “I would like to thank medical research and all those brave individuals who participated in the clinical trials that brought this drug to market.” It’s a mouthful. But frankly, it’s the least we can all do. Remind the world that without trial participants, research isn’t going any further than the lab. And I’m not just talking tissue, this is all about teamwork.Honor that.
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Posted in Uncategorized Tagged clinical trial participation,
medical research
, Phase 1
clinical trial risks,
phase I clinical trialsPIECE OF ME
Posted on February 15, 2020| 8
comments
You’d think after all these years of clinical trial participation I would have this thing completely figured out. But no. When I spoke to Alice yesterday I asked her if we would get some results from the lung biopsy on Monday. Post procedure it was explained to me that enough tissue had been successfully removed for the trial requirements, but that they weren’t able to get any extra. At the time (still groggy from the sedative) I wasn’t even sure whatthis meant.
If you recall, I had a biopsy on lorlatinib where there was an attempt to get extra tissue so that Alice could determine my mechanisms of resistance. Our sample came up empty and she asked the sponsor of the trial if they would be willing to share some of their (my) tissue with us. It cracked me up at the time (and infuriated me) that we had to even ask for my tissue. MY TISSUE. But I also didn’t understand howendemic this was.
Anyway, the answer to my question was that we were unlikely to get any results back from my biopsy (the first of two that are required). And this is when I finally understood that there is a big difference between a biopsy that is for research purposes and one that is for the clinical benefit of the patient. What is the same is this. It is my tissue, my time, my insurance that is billed for the procedure. My risk, considered high with an intrathoracic procedure. In other words, this (a biopsy) is something I am doing just for the good of science. Willingly, as I signed the protocol. However, it would not be difficult to argue that I feel coerced by both my imminent demise and the lack of potential treatment options. For those of you who wonder how I can be grateful for the opportunity to participate in trials (beats the alternative) but also angry, well,here you have it.
Tell me what is fair about requiring me to undergo an invasive procedure, pay for it (billed to insurance), undertake extra risk and potential expense–I have often had a pneumothorax following a biospy, which meant a night in the big house), and to do so simply in a spirit of altruism. Fucking A. If biopsies are required, then there should be some quid pro quo here. Results should be shared with me and better yet, there should be an emphasis on finding clinically relevant information. If this is not the height of bullshittery in clinical trials, I don’tknow what is.
And as it turns out, ASCO agrees with me. Somewhat tepidly, but for their viewpoint on research biopsies, click here.
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Posted in Uncategorized Tagged burden of clinical trial participation,
research biopsies
SCOOP
Posted on February 14, 2020| 3 comments
I had a chance to speak to Alice today about my reaction on Tuesday and one of my questions was how common IR’s or infusions reactions, are. Not rare, but in the single digits as far as percentage. So far I’m not doing a very good job of being unremarkable. The good news is that we have the go ahead to try again. Plan of action is to stick with the pre-dosing of Allegra and steroids, but to also dose again just as we are beginning infusion. And to infuse at 1/2 the rate with Bendadryl administered intravenously simultaneously. I’m going to be coming and going and am definitely not looking forward to a repeat of the Benadryl crawlies. My friend Gina sent me a weighted blanket and I will bring that with me on the day of infusion to see if it makes a positive difference. In the meantime I’m feeling OK. Profoundly tired yesterday but I have to wonder if some of that was just coming off all the steroids. My fatigue is more low key today. Onward. I hope this shit works. Particularly as this is mutation agnostic, and therefore potentially a viable treatment option for a large number of people. I shall keep you postedxo
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Posted in UncategorizedTagged DS-1062a ,
infusion reaction
, stage IV
lung cancer
, TROP2
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