Thanks for your continued interest and support for Linnea Olson.
In our weekly update meeting today (#16), we learned from Linnea that her oncologist Jess Lin has cut the time to get Linnea access to her best next treatment (the Turning Point 4th generation ALK inhibitor TPX-0131) from the previous estimate of four to five weeks to two weeks. Linnea will continue on her drug regimen (a SHP2 inhibitor plus lorlatinib) until then.
That’s the good news.
The bad news was Linnea’s experience on Wednesday of going in for surgery to have a catheter put in her lung, and having the surgeon come in at the last minute to say that they couldn’t do the procedure because insurance would pay for the procedure, but not the supplies.
For more details, please see below, the meeting recording (20 minutes), Linnea’s recent blog post (copied below), and my meeting notes.
Best,
Brad
Here is a copy of Linnea’s latest blog post (July 23):
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 surgeon comes in and tells me that they won’t be installing the PleurX because my insurance covered the procedure but not the supplies ($1000 a month to maintain). I was stunned. ‘Why could you have not told me this before I was on the table?’ I asked. No response. The surgeon then went on to explain my options–another thoracentesis or a talc procedure, which would require admission to the hospital. He also allowed that after two thoracentesis’ the risk becomes greater than the value. Fabulous. I asked them to call my oncologist (they texted her). Explained that time was of the essence here–that I would be starting back on the same drug (TNO155) that almost certainly initiated my rapid onset plueral effusion. That the PleurX catheter was being installed so that if my lung started to fill with fluid again, it could be managed. In the end, I had my third thoracentesis in a two week span. It hurt like hell. This time they were able to extact 250mm of very viscous fluid. The x-ray following the procedure reported ‘residual loculated left pleural effusion.’ So, in short, my left lung is a project. Yesterday I met with Jess. The good news is that I may be able to start on TPX-0131 in two weeks. Having a horizon line is helpful in these circumstances and now my eyes are set on that. And my blood work looked great. As for the aborted catheter, perhaps it shall be a non issue. I took my dose of TNO155 on Wednesday, but the way the trial cycle works, this week is my week ‘off’—no TNO155, just lorlatinib. So that alleviates my worries per another massive pleural effusion in the coming days. As it looks now, I may have to go back on TNO155 for only one week. There may be need for yet another thoracentesis, but a catheter may have been of limited usefulness anyway. I remain exhausted and short of breath (but less so after I get my lung drained). However, this body of mine still wants to live. I plan on honoring that. Much time has been devoted to getting my affairs in order–a great comfort. But now I need to get back to the good stuff. To that end, dinner out with Diane and her husband Dave last night, a meal with another friend on Saturday and a date on Sunday. I’m alive I’m alive I’m alive. xo
Here are my notes from our meeting today (July 23) covering points Linnea made beyond what she noted above, and our roundtable discussion following Linnea’s update on her situation:
Linnea: I pushed Jess Lin to surgically remove my left lung. I would love to just get rid of it, and work on the cancer in my right lung.
Brad: The only possible positive side of your latest insult from the health system is that it gives you more fodder for your blog.
Linnea: They may as well have said to me, “You’re low income. We’re not going to give you this particular option.” I didn’t think they could do that. The whole situation was handled very poorly. It left me feeling very vulnerable. I asked Jess to speak to the pulmonology team. I don’t want this happening to someone else.
Brad: We all commiserate because we’re all warriors for patients.
Jeff Waldron: This is great news that in a week or two you will be getting the Turning Point therapy. It’s a very positive development. It could be transformative. With regards to surgery, it might be a good idea not to put your body through that stress. I’m the least qualified person on this call to have an opinion. This therapy will let you decide longer term about surgery.
Linnea: I have to commend Jess. She has been working very hard behind the scenes with them to get me access to the drug sooner.
Rick Stanton: Was there any consideration of immunotherapies to combine? If it was me, and it is me with prostate cancer, I’m waiting for the cavalry to come over the hill.
Linnea: Not at this point. This TPX drug has some potential side effects. So we’ll see. The consensus in much of the lung cancer community is that immunotherapy is very promising, but we’re just not there at this time with lung cancer, and particularly ALK positive lung cancer.
Brad: There is a trial that is on the list for TIL (tumor infiltrating lymphocytes) that is next up on Linnea’s list and is available in the fall. That’s Plan B, after Plan A (Turning Point).
Rene Roach: I’m aware that they have a TIL trial [Tumor-infiltrating lymphocytes (TILs) are an experimental cell therapy being developed for treating solid tumors. Lymphocytes, or white blood cells, are an important part of the immune system that helps the body fight off infections or eliminate diseased cells. Lymphocytes, made up of T cells and B cells, are constantly patrolling the body to identify cells that shouldn’t be present, including cancer. As cancers grow, lymphocytes recognize these cells as abnormal and penetrate into the tumor. These are the tumor-infiltrating lymphocytes, or TILs.] with CRISPR [Cas9 enzymes together with CRISPR sequences form the basis of a technology known as CRISPR-Cas9 that can be used to edit genes within organisms.] at the University of Minnesota, and they like big lung (and liver) tumors. You have to be on another treatment for several months while they grow your TILs. It might be worth it to reach out to them to see if you would be a possible candidate. You could do it while you’re on your EAP.
Brad: It would give you something to do with that left lung you want removed.
Linnea: I have a big ass tumor in there, and they can have all of it. I’ve been feeling rather nihilistic, in part because I got so sick with the pneumonia and to feel myself failing that way, and these other challenges too. I don’t know if this old body can keep going. I feel my will to live re-emerging. Jess said yesterday that there are still options. It’s always good when you hear your oncologist say “options”, and not just “option”.
Brad: Is there anything we can do to help?
Linnea: Not at this juncture. But, again, I want to reiterate that certain things have been so helpful. First of all, the love and support and knowing that people care. Having my records accessible on Ciitizen is a boon. The additional genetic testing we got is going to be very helpful. I’ve gained a lot.