I’m heading down shortly to meet the team at Stanford about the trial. I’m both excited and anxious. I have a list of questions (below) I feel like I need answered to make a more informed decision here. I’m getting tired of the analysis piece and excited to move onto a decision already. I’m close. The more I pull on this thread the more interesting/scary this whole thing gets. For example I was talking about cytokine storm (basically your immune system releases cytokines ) yesterday with my friend Geoff. He reminded me that the great influenza pandemic (1918) also inflicted cytokine storm but disproportionately impacted the otherwise young and strong. Great point. Where might my age possibly work against me in all this?
There are two domains I’m considering here. The first is around making the soundest medical decision possible. That’s the main focus. The second one is navigating the labyrinthine world of medical insurance. On that piece the key issue is verifying what Kaiser will/will not pay and refer for around the various potential scenarios. Since Stanford is a partner I’m hoping they may be able to shed light from the other side.
So the next steps here are to hear out Stanford and get a feel for my levels of comfort, ask: would I go to war with these people? Michelle and Lua will be there to help! From there if I still have questions or feel like there’s bias at play I’ll follow up with UCSF, Dana-Farber to finalize my decision.
While this whole situation is obviously emotional and hard for me, I’ve been thinking a lot lately about the idea of medical access. I’m deliberating questions that are really hard. And there may or may not be a great answer. But I need to explore it fully, if only to ensure I’m not stepping into potholes (trusting one doctor is probably not the best way to do that)! But I have access to great institutions to seek out the top opinions. I have the Chutzpah to stand up to doctors and enough curiosity to find answers. I have very smart friends that can help me think it through. Most people in our country don’t have this. And it’s so easy to misstep. So I’m trying to put my situation into perspective, reminding myself that both options are pretty good given my situation. I’m lucky to even be making an informed decision here.
Here’s my working list of questions.
- can you switch arms from car-t to SOC without ‘penalty’ if not successful? Is it really a simple swapping of events?
- are the odds for auto transplant really 60%? Can that be segmented by age?
- What other trials are around the corner for CAR-T? (e.g., targeting cd22+cd19?) what if it comes back? Would it be harder to enter into other (CAR-T) trials?
- How close are checkpoint inhibitors in addressing NHL? Lots of excitement and from the looks of at least one (phase 1b) trial there are virtually no side effects. Interesting
- longer term issues with T-cells? How long do the chimeric versions last in body?
- What if CAR-T is only partially successful? Assuming outcome is binary else move
to SOC (standard of care)
- suppose I do SOC and it’s successful! Then cancer comes back several years down the line. I’d assume CAR-T tech is further along. Am I in a better place then? Conversely would I have limited my options because of doing this trial?
- What’s the penalty for waiting 3 months w/r/t treatment?
- How much tumor burden can CAR-T handle? Better off trying to reduce it with SOC first (meaning better chance of CAR-T working?)? Is that a benefit of doing it 3rd line?
- Cytokine storm – does it hit young/strong harder than old? Remember the influenza pandemic of 1918 (I think young were disproportionately affected); any data on this re: CAR-T?
- review odds of various arms
- have kaiser patients gone through this? Has kaiser paid for 3rd line treatment assuming I get SOC and it doesn’t work?
- run through scenario if cancer progresses on SOC, on CAR-T? What would then happen?
- Meet the lymphoma doc if possible
- what does the autologous transplant process look like?
- Opinion on which chemo regimen for SOC
- Review benefits of timing on both arms. Getting to a yes/no happens faster with CAR-T (by 50 days we will know). That suggests that within say a 6 month timeline the cancer could get hit with 2 separate approaches vs. just one. How to think about that…
More to come after the meeting…