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lymphadenectomy

UPDATE: Michelle is home from surgery, sore but otherwise well. And the procedure was successful in obtaining enough tumor cells for both the pathology and the functional profiling. Here's a picture of Michelle and Dr. Rodriguez unpacking the return kit for SEngine, which I dropped off at FedEx for overnight delivery!

-- Bruce



Monday at 2:30 I go under the knife, again, for a little surgery called a lymphadenectomy. This is a biopsy, not meant to be curative, but simply to get tumor cells from my right pelvic lymph node for additional pathology, genetic testing and an exciting new process called functional profiling. (More on that below). My Gyn Onc surgeon, Dr. Anne Rodriguez will perform the 2 hour outpatient procedure. I will spend 3 hour in recovery and should be home by 9pm Monday. Bruce will update THIS blog post on Monday night. I'm not too worried about surgery, if I can handle 54 staples, I can do anything.


This past week was full of Dr's appointments, imaging, tests and increasingly feeling unwell. It is scary how quickly things can go downhill. My heart is racing, my left hip is aching from a metastasis, and I have increasing pain from behind my sternum radiating around my lower left ribs. Probably caused by the largest tumor, which is near my pancreas. I am dreading the next 3-4 weeks before I can start a trail. Today, right now, I don't see how I can make it.


But back to something hopeful. My internet wanderings lead me to SEngine, a biotech based in Seattle that performs functional profiling. My living tumor cell will be shipped overnight, the lab will grow the cells for a week into a little "organelle" and then KILL them by performing "PARIS test." Functional profiling is a trail run of chemo agents, in standard and novel combinations, specifically designed for my mutations. By testing dozens of pairing and novel drugs still in trials, we can make the most informed choice for my best treatment. One trial, related to a folate receptor, shows longer progression free responses in some patients. And to be wildly hopeful, I read about a few metastatic/terminal patients who were cured after never considered combinations were discovered with this process. We can hope.


Another recent discovery that I want to share is Cancer Commons, a free service to metastatic patients that matches them with the most hopeful clinical trials. My counselor is Emma Shtivelman PhD. She jumped into action, reviewed my pathology, suggesting new tests and compiled a 4 page summary of clinical trial options to review with my Oncologist. As someone who understand the science enough to want the details and a plan I found this reassuring. I love their goal of bridging the gap between the N of 1 successes and speeding improvements in standard of care.



That is all the news for now. I will have a care plan when testing is back in 3 weeks.

Off to get a required Covid test before surgery.

mk

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Maria C
Jan 18, 2021

Thinking of you today, my dear. All that you report sounds fantastic except for the downhill part. Fingers crossed they find a good trial for you to join. You are the epitome of taking your care into your own hands, with all your internet research! Good for you. Here's to informed best treatment options. I tried to get a job at the company that issues those reports, to spiff them up--they took a different path. But I found what they were doing really interesting and good, and I'm glad it's helping you. Also, did I tell you about ACIR? https://acir.org/about. It was started by a former boss of mine. It's geared toward researchers and you certainly fit that definiti…


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Eritrea Brhane
Eritrea Brhane
Jan 17, 2021

You are in our thoughts dear.

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gafox1
Jan 17, 2021

This functional profiling sounds like an utterly sensible approach. Glad they're doing it! We'll be thinking of you.

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Temmo Korisheli
Temmo Korisheli
Jan 17, 2021

Hang in there, Michelle! These are some interesting new possibilities -- hoping that one of them works out for you! All best wishes to you.

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robincbrady
robincbrady
Jan 17, 2021

You’re in our thoughts Michelle. ❤️

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