A Tribute to Linnea
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
Evalynn Linnea Olson 11/26/1959 – 11/15/2021 As many already know, it is with heavy heart that we share news of Linnea’s passing.  She was able to pass away at home, her adult children and family members were with her, and her clinicians and hospice team provided the full care and support she needed. It was very important to Linnea to be able to make an anatomical donation to the Mass General Cancer Center lung cancer research lab instrumental in her care. Together, her family and friends were able to help achieve all of her final wishes. On Friday, December 3rd, Linnea’s family and frien ..read more
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I am here.
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
At times, it’s been more that a little touch and go. Although I couldn’t possible relay the whole sordid tale, I shall attempt to hist some high and low spots. TPX0131 and I had a brief and tempestuous relationship. Six days in I would have said no sigh effects. And then the shit hit the fan big time. Initially I was admitted to the ER for a lingering pneumonia (fevers–serious ones–of unknown origin.) They did what they could for me (IV antibiotics) and then I was released. Briefly (and if any of my handlers/editors notice any errors–please let me know. I am not entirely sure this visit was po ..read more
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The necessity for compassionate use/expanded access
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
My participation in this, my sixth phase I clinical trial, would not be possible without the concept of compassionate use/expanded access. That is because I did not qualify–was precluded–from the actual trial. The reason? Because I’ve had too many previous therapies–specifically ALK inhibitors. Three to date. Well, until yesterday Now four. Fortunately, there was a back door. And I had a crew of people knocking on it for me. Colin Barton, who works so much magic behind the scenes at ALKPositive as chair of the Medical Committee. I talk a lot about goddesses; this man is a god of good. An ALK ..read more
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TPX-0131
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
Heather, Linnea, Jess A fourth generation ALK inhibitor provided to me by Turning Point Therapeutics through compassionate use. At 1:30 pm today I took the first dose. Before handing me the tiny tablet (it is one mg), Dr. Lin and my nurse Heather performed a little ritual—a blessing of sorts. And then, down the hatch. By Dr. Lin’s estimate I am the third person in the world to take this drug (it is in clinical trial in Australia) and therefore it is impossible tp predict side effects. Truthfully, I am far more interested in efficacy. And the thing is, if this experimental therapeutic is goi ..read more
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Drained
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
What a busy seven days it has been. Melinda and Sally, Jemesii, Peter and his girlfriend Caroline and my brother Bink and sister John have all visited over the past week. It has been great fun, much has been accomplished and I am exhausted. However, I also have had more baseline energy. A function of restarting TNO155? Perhaps. This morning I was scheduled for installation of a PleurX-cath–financial assistance approved. My breathing has also been some improved and I went to the appointment hopeful that I should be turned away again–but this time for lack of necessity. And indeed a Pleur-x was ..read more
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Waiting.
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
And (allow me some dark humor please) the suspense is killing me. Unfortunately hurry up and wait can play an overarching role in the management of cancer. There are even rooms for this–Waiting Rooms. And I have spent far too much of my precious time in such. At the moment my waiting is of a different sort. The expectation was that I should be starting on TPX-0131 this week. However, at my appointment last Thursday, I learned that lead in dose has been pushed back by another week. FDA and the IRB have both signed off but this holdup is in manufacturing and labelling. Whatever that means. At th ..read more
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Maligned
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
After a pleural effusion, a cytology test is performed. The results of my first two were reassuring. No cancerous cells found. However, there was a note of caution: the left pleural fluid cellblock contained ‘rare groups of highly atypical epithelial cells, consistent with metastatic adenocarcinoma.’ My third cytology exam, following last week’s procedure, was unequivocal: malignant. Acccording to Medscape, ‘Development of a malignant pleural effusion is associated with a very poor prognosis, with median survival of 4 months and mean survival of less than 1 year.‘ Any treatment is considered p ..read more
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Death benefits
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
This one’s staying. Dying is a permission. Even might be dying but damned well hope not. Yes, I’ve been taking care of the necessaries. Just exchanged some texts with a dear friend who is an attorney and who is drafting a document that shall specify where I’d like my body to go. Her last text asked about who is to receive my cremains. It is all that casual. That’s the heavy stuff. On a lighter note I am buying the better bottle of wine. Lying out in the sun, because Vitamin D is good for you and fuck wrinkles–not my problem. Time to–as someone once said–get the good china out. Death is about l ..read more
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But the show must go on
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
I was to get a PleurX catheter installed on Tuesday. However, I thought my appointment was in the afternoon whereas it had been in the morning. It was rescheduled for the next day and I spent Tuesday sleeping–exhausted as the day before the rest of the contents of my studio had been moved by (I kid you not) the two slowest movers on the planet. They did a good job though so all’s well that ends well. My appointment on Wednesday was of the bright and early variety but this time I was where I was supposed to be when I was supposed to be. Johnnied up, on the table, being prepped. And then the sur ..read more
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And a few more salient details
Life And Breath | Outliving Lung Cancer
by linnea11
2y ago
I am exhausted. Spent, if you will. Therefore today’s blog is a cut and paste–taken from a message I sent out to my siblings and some close friends. Another update. Not the kind I like to give. I hadad scans and saw both of my oncologists today. In short, it is still a shitshow in my left lung. Pleural effusion, partial collapse, possible pneumonia and a super aggressive cancer (Alice compared scans that were eight days apart and it had grown). And, unfortunately, my fever returned today–still low grade but not a good sign.   Next week I shall have a drain installed in my left lung a ..read more
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