Thanks for your continued interest and support for Linnea Olson.
Linnea was unable to join us for our weekly update meeting today (#17). We know from her latest blog post (copy below), that she is hoping to start on the Turning Point drug in a week. She was scheduled to see her medical team yesterday, and they were going to discuss a procedure (a pleurodesis) to contain the fluid accumulating around her lung.
In our abbreviated conversation on our call today we learned that:
Kimary Kulig received a copy of the HIPAA authorization form back from Massachusetts General Hospital that she had sent to Linnea several weeks ago. I added that I had spoken to Joanna Morales of Triage Cancer, who offers patient-friendly forms on a variety of topics. (Thanks to Sophia Cornew of Ciitizen for the connection to Joanna.)
Kimary reported on her outreach to Calithera, a young drug company working on one of Linnea’s unique mutations, which had no agents ready to help Linnea.
Jeff Waldron, Will LaValley, Peggy Zuckerman, and Kimary talked about the ideal design for patients to provide access to their medical records to friends and family they designate. I mentioned that we have solved this through Ciitizen’s hosting of patient data for the hackathons.
Please send love and energy to Linnea during this trying time.
Here is a copy of Linnea’s latest blog post (July 27):
Mis-Maligned Posted on July 27, 2021 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 palliative. Grim and grimmer. However, my first response was take that twelve months and double it. Unrealistic? Sure, hell, why not. However, little about my last sixteen years has been realistic. Surreal is certainly a better adjective. On Thursday I will see both Jess Lin and Alice Shaw and we shall discuss a pleurodesis. And, a week later, I will hopefully be taking my lead in dose of TPX-0131. In my wildest dreams, I shall respond and begin to feel better. In the meantime, I am still adjusting to, well, limitations. Because of fatigue, I had pushed last Sunday’s date night to this evening. However, after showering in preparation, I immediately felt nauseous and vomited. This is likely a side effect of the pleural effusion. I called my (very understanding) date, who was already enroute, and told him I would need to cancel. Again. And that, in all honesty, I was fooling both of us in thinking that I was well enough to socialize. As an enthusiast, I sometimes operate under the assumption that I can just power through. However, my body is making it increasingly clear that it is time to rest. So I shall. Pace myself. But, with not just the hope, rather the expectation, that I shall rise (and date!) again. xo
There is no video this week.