All posts by ariakerstein

The Stanford opinion

I’m sorry, you don’t qualify for the CAR-T study. Sorry you had to come all the way down here to hear that news…’

That was the the ‘Fellow’ I met with. He continued, ‘…our pathology report says this is ‘follicular lymphoma, grade 3a’, which means there is no CAR-T option available at this point’. I was stunned. This was not the conversation I was planning to have.

So the pathology report conflicted with Kaiser’s. For some reason on the call Friday the nurse told me I qualified for the CAR-T study and that’s why I should come in Tuesday. Based on my read of the clinical trial I took that to mean I had a DLBCL, or at least existence of 3b cells. Then the study coordinator called me and we discussed the trial details under that assumption. There’s a saying I am finding increasingly helpful: do not attribute to malice that which can be explained by incompetence.

Then I met with the primary doctor. VERY sharp guy. He opened up the fire hose, speed talking immunology like we (Michelle and Lua were there) were PhD’s in it. I didn’t follow every mechanistic detail but I got most of it. And I appreciated that as I took it to mean he was leveling with us. This stands in stark contrast to what can often feel like party-line medical answers from other doctors.

The issue, in part, is that the programmed cell suicide pathway is disrupted on these B-cells; when a signal is sent that it’s time for a cell to die (called apoptosis), they don’t listen. As a result these cells will accumulate in the body. At what rate they accumulate remains unknown. In contrast DLBCL/3b cells actually divide more rapidly. Aggressive Follicular it seems is kind of a grey zone – scarier than follicular 1 or 2, but less of a Russian roulette treatment path than DLBCL.

Tracing this back to the original diagnosis, the current thinking/most plausible explanation for the current diagnosis is that the original tumor (before any chemo) was a mix of 3a follicular and DLBCL. Stanford actually re-classified the original Kaiser pathology report as 3a + DLBCL (it was originally 3b+DLBCL). Regardless my treatment was the correct one though we’ve been saying it ‘wasn’t successful’. That might be a bit unfair given what we’re seeing now. What we think the latest biopsy shows is the first-line treatment was successful in killing the nasty DLBCL, but left the slower growing 3a follicular cells which aren’t responsive to that treatment. Apparently this is not an uncommon situation.

Your eyes may be glazing over at this terminology but it’s a clinically important distinction to understand. To remind you, ‘follicular’ lymphoma is the slower growing, somewhat less aggressive version as compared to DLBCL (see the sketch). The ‘3’ means it’s more aggressive than 1 or 2, so it’s on the high end of the indolent/slow growing type. And Follicular lymphoma is not curable – not now.

Quick sketch of aggressiveness: dlbcl vs. follicular lymphoma. The original diagnosis from Kaiser showed a mix of 3a+3b cells (circled here). Stanford in contrast says there’s no 3b present.

His recommendation, incredibly, is to watch and wait. He doesn’t think I should undergo treatment this very minute. He said I should do a scan in 3 months (that’s 3 months from the last scan date) – which is a few weeks from now. In his view the risk/benefit of undergoing increasingly toxic chemotherapy and stem cell transplantation doesn’t make sense given this report. He then went on to describe the side effects and long-term issues with those treatments. As just one example, when I asked about CAR-T cytokine storm disproportionately impacting young more than old – turns out that’s true. Scary. He said “you’re 41 years old. You have a beautiful daughter. I want to hold off putting you through this if we can.

Or, translated to YiddishkeitMazeltov! You have an incurable form of cancer. 

How am I holding up emotionally?

I’ve got whiplash. I entered that meeting considering poison A vs. poison B. Instead I got an entirely different recommendation to sit tight a few weeks, to wait for that next PET/CT to tell us what the disease is doing. So, again, I have conflicting data points. If I allowed my mood to reflect the circumstances I would be a disaster. I love the idea of awareness as reflecting the space one has created between stimulus and response. I’ve been trying to pry that space wide open lately and not get perturbed by information: good or bad. Here’s an exercise I do sometimes: I imagine these bits of information as an object, like a storm cloud or a blob floating in the air above my head. And it’s charged – it has energy.

A boy contemplates information: am I going towards or away from this?

Energy itself is neither good nor bad on its own, it’s what it gets used for. I look up, like a boy to a balloon and consider how that energy is affecting me. I try to keep it simple: am I going towards that energy, or away from it? Then I peel it back another level, why? And then another, why? Until I feel like I’m at the root of what’s causing that feeling. What’s in it? It’s not perfect but I find it a helpful practice to get perspective. Left unchecked, thoughts can be pernicious things, can de-rail a mind. In particular I find that non-helpful narratives spring like weeds. I need to be a vigilant gardener, lest they take over. For example, as a father, it’s hard not to envision what life might look like for my kids if I weren’t around, if this thing got me. It’s horrifying to consider and it’s so easy to get enamored with those kind of ideas, to let them take you down. I try to root that stuff out without mercy. The trick is to be aware of them in the first place which is not so easy.

Swinging on branches

After the appointment we met a friend for lunch. As we sat outside on the quad at the nearby Google campus on a beautiful day I was overcome with the idea that I was at that moment living on a highly improbable branch of possible futures. If for a moment we assume Stanford is right then here’s the most likely alternative reality that I’d be living had I not sought all these other opinions…I’d right now be undergoing 6-8 weeks standard of care second-line treatment focused on targeting the wrong cells (DLBCL). That would probably not work because, as I understand it, follicular 3a type aren’t responsive to that treatment. Then I would do a PET/CT to see if it was successful in curing my (incurable) cancer. Another week of waiting. Then, when the results returned negative my hopes on moving to the autogenic transplant would be dashed – no passing through the second gate toward curing this. Cue feelings despair, devastation, hopelessness. If the disease showed progression I might need to get another biopsy to see if there was any mutation – it’s not uncommon for follicular lymphoma to mutate into DLBCL (that’s likely what happened at the outset). Now suppose for a moment that a few weeks/months/years down the line that happens again. What then? Well, then I’d be in a position whereby I’ve exhausted two of 3 (currently) available bullets to treat this (First line – done; standard of care – done; CAR-T – still available). All because of the wrong diagnosis. I’d be in a position of yet more stress inflicted on me and my family, reduced optionality, and with elevated toxicity inflicted on my body.

Next Steps

Who do I believe? What’s my next move? There are, broadly, two pieces to consider. The first is aligning on the diagnosis, then, what to do about it. These seemingly minor differences in diagnosis suggest wildly different approaches and it’s frightening how different the recommendations are given that it feels like we’re splitting hairs on terminology.

I need to know that Kaiser is aligned with Stanford. And I need to cross check all this with UCSF and Dana-Farber for additional confidence. The original recommendation to press ahead with second-line standard of care still lingers. Taking news at face value hasn’t been my approach so far no matter who is delivering it – good or bad. So even if the Stanford pathology report is to be believed (and I want to), there’s still a very real possibility that I travel down the standard of care path in the immediate future. It might still be the right move. Here are the most obvious scenarios by which I could see this happening:

  1. Stanford reverses their recommendation. Stanford hadn’t yet received my PET/CT results from Kaiser. They need to review that information and follow up with me. 
  2. Second opinion disagreement. I’ll validate this second pathology report with my ‘panel’ of expert doctors. There could of course be sufficient doubt about this diagnosis and a recommendation to bias towards supreme vigilance. I’m considering getting a third pathology report if there’s sufficient tissue to do so to bump my confidence in the Stanford report. Or perhaps a 3rd pathology report would agree with the original? I can’t help but still feel uncomfortable that this may be a sampling issue whereby they sampled a part of the tumor, and then are staining a sample of that sample. This may be overkill but seems a reasonable step to take at this point. 
  3. Next PET/CT scan shows progression. If I do wait and watch this thing, my next scan could show disease progression. Might that suggest the pathology is wrong and that aggressive cells are still present? Not sure yet how to think about that piece, without doing another biopsy (ugh!). Either way the assumption this is 3a/slow growing would seem debunked at that point and would I think suggest the standard of care route. 
  4. Transformation. As noted above it’s not uncommon for follicular lymphoma to transform into DLBCL. This could be happening now, could start weeks/months/years, or might never occur. From a quick read of the literature that likelihood increases 2-3% per year, not sure if it’s age or grade dependent.

So, immediate next steps:

  • Ensure Stanford views the PET scans from Kaiser and sticks with this recommendation. That seems critical to rounding out the picture.
  • Ensure Kaiser aligns with Stanford on this diagnosis and treatment path. The doctors hadn’t spoken last I checked but both agreed to connect and discuss.
  • Align with UCSF, Dana-Farber on second pathology report and treatment options/risks to various strategies. The conversations I had previously assumed a different diagnosis.
  • Run a 3rd pathology report? Schedule next PET/CT in a few weeks?
  • Finalize answers to open questions, concerns and decide on the path forward.
Lua is skeptical. She tries to log into EPIC to review the pathology report for herself!
The best drawn plans tend to be done on mini etch-a-sketches at the kitchen table. I’m going to need a bigger etch-a-sketch!

 

 

 

 

Stanford meeting this morning

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.

Access

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…

I qualify for the CAR-T trial at Stanford

I got a call yesterday from the Stanford new patient coordinator. The second pathology report is in and I do qualify for the study. She set me up for a meeting Tuesday. This must mean they think this is DLBCL, not follicular lymphoma. 

The pessimist (realist?) in me considers the following totally hypothetical & unsubstantiated scenario: What if Stanford ‘finagled’ the pathology report such that I’ll qualify for their study…the diagnosis was nebulous anyway and this is a fairly rare diagnosis especially in my age bracket (see below). So recruitment for this study is likely hard; I know they’ve only successfully recruited 10 patients in over a year. I also I know that Stanford and my Kaiser doctor discussed my case other day. In their discussion perhaps they disagreed on the diagnosis, second pathology report findings. That might be seen as reflecting poorly on Kaiser, if only given how questionable the first pathology report was. If you’re Kaiser then perhaps better to say nothing, hence the cagey answers to my questions the other day. Not trying to hatch any conspiracies but am I nuts for thinking about such a possibility? I’m sure stranger things have happened.

That got me thinking about the size of my age-bracket cohort for this disease so I dug up some stats. From my napkin math based on Cancer.gov and rates I’ve heard elsewhere, I’m estimating that I’m one of fewer than 300:

New cases, U.S., 2018: 74,680
Cases 35-44 yrs old: 3,958 (5.3%)
% DLBCL: 1,187 (30%, assuming it’s equally distributed across all ages)
% DLBCL that fail 1st line treatment: 297 (~25% fail rate)

Then at about 6pm I got a call from the study coordinator. She asked me what questions I had about the study. We discussed what happens in the scenario when CAR-T fails as 2nd line (assuming I got that arm, it’s 50/50 and not blinded). Turns out I would in fact switch back to the standard treatment and do the second round chemo with a goal of getting to the stem cell transplant if CAR-T failed! That was the key piece of information that had been missing. It’s not clear how passing through CAR-T before the chemo treatment would change the odds, if at all. That will be a follow up for the doctor. I also asked about the CAR-T odds vs. standard treatment – here’s what the document they sent me says, verbatim:

The Stanford Cancer Cellular Therapy Program is offering a clinical trial for patients who are affected by Diffuse Large B Cell Lymphoma (DLBCL) that is relapsed or refractory to first line chemotherapy. The sponsor of this study, Kite Pharma, Inc, conducted ZUMA1, a Phase 1/2 clinical trial using the same CAR-T cells, now called axicabtagene ciloleucel (Axi-cel). ZUMA 1 investigated the safety and efficacy of Axi-cel in subjects with refractory aggressive NHL, and axicabtagene ciloleucel significantly improved ORR (P < 0.0001). The ORR was 82% with a complete response (CR) rate of 54%. At the primary analysis, 44% of subjects had ongoing responses (39% in CR) and 42% were disease free more than one year following Axi-cel therapy. Axi-cel received FDA approval to treat relapsed/refractory DLBCL after two or more lines of systemic therapy in October 2017 and is marketed as Yescarta. Axi-cel may have an improved efficacy and tolerability in patients with less chemo-refractory disease and lower disease burden treated earlier in their DLBCL disease course.  In this randomized control trial, axicabtagene ciloleucel will be compared to standard of care (SOC) therapy.

I’m just getting up to speed on the trial outcomes lingo: ORR (objective response rate) vs. CR (complete response) etc. I’m going to need to ensure I understand the various measures for BOTH the traditional vs. the CAR-T arms of the trial. My schematic the other day didn’t look at these nuances, it was simple yes/no outcomes that track to CR (which is defined as no detectable evidence of tumor).     

This study is 50/50 randomization which means that there’s a 50% chance I’d get CAR-T therapy and 50% chance I get standard chemo; same as if I did it at Kaiser except that infusions are done on a 3-day inpatient basis. Also I’d be the youngest participant by about 10 years (at least at the Stanford site, there are others around the country). Most participants are in their 60’s, 70’s which probably makes sense given the disease rates. This is the specific study for those interested. I left the conversation feeling much more comfortable with the situation despite my wild speculations noted above. 

I’ll head down to Palo Alto and meet with them Tuesday to get more information…

 

 

A follow up meeting with Kaiser

Last night I met with my Kaiser oncologist. He seemed encouraged by the genetics studies coming back negative for everything saying that’s predictive of a better prognosis. I asked what ‘better’ looks like to him. He said he thought second line treatment would be in the 70-80% range. I mentioned that others I’d spoken to put that number quite a bit lower, closer to 50%. “Right, those are global averages they’ve been giving you, and you’re young and strong“. Fine, I like higher.

Then I told him that we were looking at an incomplete picture, that we should be looking at this situation “end to end” and taking the second line odds along with stem cell success rates. “Yes, that’s right” he said. I told him that if I do this it looks fairly pessimistic, more like 35% overall. He said he thought my chances going through this were higher than 50%. None of this whole conversation about odds really changes much but what’s frustrating is how much digging and prodding I feel like I need to do in order to get a clear picture of what’s going on. These are VERY important decisions and I would expect my doctor to level with me about not only the immediate step ahead (what I currently get) but looking a step or 2 further out and presenting a clear picture of what success looks like, not just an intermediate step. Not sure if the motivation is to not get ahead of ourselves, or to not freak me out or something else? I also inquired about CAR-T therapy as second line treatment. He thought it didn’t make sense to go that route given the odds are still decent for standard lines of treatment. That aligns with the UCSF conversation. I’ll have a better idea after the Stanford meeting.

Turns out that in terms of referring for CAR-T treatment should second line fail, Kaiser only refers to clinical trials. This was yet another somewhat frustrating part of the conversation. This was all framed as being in the patient’s best interest because the drugs are 2nd or 3rd generation versions whereas the commercial products are, say, first generation. To which I offered that clinical trials are by definition not FDA approved and hence risky. So then we got to the real issue which is that Kaiser doesn’t want to pay for it. If it’s cost then fine – that’s a legitimate consideration. That’s different than framing it as something in the patient’s best interest. But again, I keep feeling like I need to peel back the onion 2, 3, sometimes 4 layers to get a satisfactory answer to basic questions. My head is swirling with a LOT of information and high emotion and I don’t want to be on guard to discern what a doctor is really saying to me.

And I didn’t get a straight answer to the pathology opinion either. I asked, “So did you get more eyes on the pathology report internally”? “Yes we did but I don’t think they wrote it up“. I said, “so why not”? He then bypassed the conversation saying that the Stanford pathology report is what matters here and that piece is happening. “Maybe I’m mistaken but I thought the diagnosis matters, if only for setting ourselves up for 3rd line treatment“. He then said he thought I was going too deep on a pessimistic scenario – that there was no need to go there yet. I agree to a certain point but in the end these are VERY real and somewhat imminent possibilities. All I’m looking for is satisfactory answers about next steps. That doesn’t seem unreasonable. I walked away shaking my head and thinking that my levels of comfort with Kaiser are sinking.

In attempts to simplify a complex situation below is a decision tree illustrating the various scenarios and rough odds to the degree I think I understand them (in some cases not at all). This is evolving and there are quite a few unknowns w/r/t various paths but I don’t think I need a complete picture of every possibility here, just the main ones. For example it’s unclear to me if there’s some sort of a ‘penalty’ associated with failing second line treatment then moving onto CAR-T therapy; are those CAR-T odds reduced in such a case? Also, what happens if CAR-T therapy is not successful, what then (e.g., in the case of doing this as second line treatment it seems there’s not much to fallback to)? Finally, these percentages are best guesses and could in several cases be wrong; for example I have no idea the CAR-T odds for my situation so I’m going with 60% (I’ve heard ranges from 35% to 85%). Anyway if it’s not better than that it wouldn’t be worth discussing now. I’ve marked in orange the most likely path I see myself going down for second line – that one seems about right.

Orange path is the likeliest one at this point

decisions – getting closer and UCSF second opinion

How much uncertainty is tolerable when making a life and death decision? And what are the forcing-functions on that decision? I really like what Jeff Bezos says in one of his annual letters about one-way versus two way doors: 2-way doors ought to be made with a bias towards speed over perfection (you can always go back or iterate the decision). One-way doors in contrast are non-reversible and ought to be made with great care and deliberation. This second-line decision is clearly a one-way door…and I’m getting kicked through it from behind!

Schematic of decisioning second line treatment (pardon my quick scrawling). Y-axis is relevant decision info vs. time. There is no perfect information and much that will never be known. The majority of the relevant information must be gathered within 2 weeks (big shaded area), with incremental utility coming after that (small shaded area). Not shown: there is risk to dragging a decision out further than week 2 as risk of cancer progression.

As with any decision there is a key distinction to be made between the decision itself and the outcome: sound decisions can turn out badly, poor decisions sometimes result in success. But lucky outcomes over time tend to favor the better decisioning process, while any single decision may not. So the mental framework I’ve adopted here is to saturate my information gathering space such that I’m in the best possible place to make an informed decision under a hard constraint of time (see schematic). In this case that’s roughly 3 weeks from the biopsy (affording for context-specifics like exploring any clinical trial options).

Thus an important question I’m asking myself is which option minimizes regret in the case of a poor outcome. For example, if I did a trial for CAR-T and it failed (though on paper the odds might look better) I would likely have regret for not having tried a standard of care treatment with a reasonably decent chance of success first (see table below). That’s a strong argument against CAR-T as a 2nd line option. I’m about 85%+ convinced that going the standard 2nd line treatment is the way to go. I could see reversing this viewpoint if either I get new information from my conversation with Stanford specific to 2nd line outcomes, AND/OR if there’s some ‘gotcha’ about 3rd line CAR-T options that changes the landscape (say unavailability of the drug which I’ve heard can happen, payment issues, outcome changes given that 2nd line failed, etc). Before I start treatment I want to ensure I fully understand how exactly CAR-T would be an option (see questions below, e.g., where would it happen, which manufacturer, etc.) for me, should I need to move onto 3rd line treatment.

For all the talk about valuing independent thinking in our society – and especially in silicon valley – it’s a challenge, and perhaps of questionable merit when it comes to making complex medical decisions. Going against standard treatment options or recommendations is a form of mild heresy. But as situations become increasingly desperate and odds of success dwindle there is probably some threshold whereby it becomes sensible to start thinking more laterally, more independently. I’m not saying this applies to me at this point but it is something I think about as a person that likes to reason for himself. It’s worth asking questions and ruling them out for ones-self versus not considering them in the first place. For example, I’ve been pushing to start treatment IMMEDIATELY. But if I think more holistically I can ask the question: what if I sit on my hands and do nothing for 3-6 months here? Part of the motivation might be to see if yet more treatments come online as there’s much in the current FDA pipeline. No medical professional would recommend it. It’s like the bioinformatics joke my friend Mike tells about protein folding problems… Protein folding problems are hard under any circumstance. The PhD students in his group would sometimes ask whether they would solve the problem more quickly by hitting their head against the wall NOW, versus putting the problem aside, playing hookie for 6 months, then coming back to it then. Counter to intuition, and assuming Moore’s law holds (computational power improves markedly over that period), the latter approach might sometimes yield a faster result. It’s not meant to be laugh out loud funny but it illustrates the point well.

You might be this very moment thinking that the chemo has compromised my ability to think straight for even going there. But there are documented cases – at least one – of spontaneous regression/remission in aggressive B-cell NHL; life is certainly weird. And a quick skim of the literature suggests these rates (>=10%, at least in the more indolent types) warrants further investigation. Which means we don’t know enough about it to make any kind of substantive claims one way or another…which means it’s not a topic of conversation and hence, for practical purposes doesn’t exist in the possibility space of options. Don’t worry – that’s not what I’m going to do. While it may take a bit longer my bias is to consider it and explicitly rule it out versus not thinking at all about it all. I really take this seriously and want to consider every reasonable possibility, if only for peace of mind.

I’ll do my best to summarize where things stand after taking in a LOT of information. You’ll have to bear with me if this is dense as I’m trying to synthesize a ton of information and not sugar coat anything. To paraphrase (French mathematician) Blaise Pascale “I’d have written you a shorter letter if I had more time”.

UCSF second opinion:

Tuesday I met with a UCSF oncologist. I wasn’t expecting to get much from this apart from validation about what (I think) I understand. I’m paying out of pocket for all these other opinions. And it’s money well spent. The goal here is to maximize the useful information I get toward making a decision within a very contracted timeframe. This was supposed to be a one hour conversation, which seemed like more than long enough. We ended up meeting for nearly 2.5 hours. We didn’t start until around 4:45pm and ended at 7:15. I first met with one of the fellows. “I’ve read a lot about your case” she said. “I can’t believe you exercised through R-CHOP. I haven’t seen anybody do that!“. She then inventoried the questions I had for the doctor before bringing him in. I rattled off some of the questions I’ve been pondering. “So how did you get so medically literate?” she asked. “I probably just take more of an interest than most patients“.

First off we went through my information on EPIC. Because I took the time to read through the pathology report, have been studying this quite a lot lately, and have been having many conversations with knowledgeable folks, we were able to go VERY deep on various issues. Not only was I incredibly impressed with the level of answers (at one point we were sketching outcomes on paper), but his willingness to go there WAY beyond anything I’ve seen thus far; I expected him to kick me out after an hour but we kept on going until he was sure I was satisfied. Extremely impressive. I walked away feeling like I took a step-function jump in my understanding and comfort level in terms of proceeding with standard line therapy. I’ve now got nearly sufficient information to press ahead. After the meeting the fellow actually came in and thanked me, “Thank you for going so deep and probing so hard, I learned a TON in this conversation”. I thanked her but said that of course I was the one now better informed. UCSF must understand the placebo effect and must be banking on those non-trivial effects by boosting patient egos:). I’ll take it! Here’s a summary of the discussion and where things currently stand.

Diagnostics:

Kaiser told me the genetic study wouldn’t come back until Monday (per my last post, when you’ll recall I lost my cool). Turns out the FISH study was in the system after all! So I got my results from UCSF before I got it from Kaiser. That’s the second time in as many weeks. Ugh Kaiser! Anyway the news is good there that I don’t have any genetic mutations, all negative, which is great. That information could really only have complicated an already complex situation but I’ll take the small win where I can get it!

For Non-Hodgkin’s lymphoma, at least my type, there’s a continuum from follicular to large b-cell lymphoma (DLBCL), with the former being slower growing/less aggressive and the latter being more aggressive. Follicular is manageable whereas DLBCL is curable. I’m somewhere in the middle. For that reason I always thought that, given a choice, DLBCL is better assuming you catch it. But turns out the odds of curing it if first line fails are not so high and therefore options get limited with each subsequent treatment – basically Russian roulette. The doctor basically rebutted the argument saying effectively: would you prefer to live a normal life managing cancer (if follicular), or roll the dice on curing it and possibly not succeeding (DLBCL)? This was a VERY hard conversation. 

Standard treatment

There is still some disagreement about which protocol to use (see table below). Specifically, the recommendation from Kaiser is to use R-GDP as the chemo protocol. UCSF explicitly recommended not doing that one, opting instead for D-HAP or R-ICE due to my ‘ABC’ subtype. Note these are 3-day inpatient treatments, not outpatient which reflects that they are ratcheting up the toxicity. The second line chemo has a 50% response rate.

Triangulating various professional opinions on second-line chemo regimen. I’m considering 2 dimensions: trust vs. strength of recommendation. R-ICE scores highest across 3 opinions, though I’m still waiting on Stanford recommendations.

It’s important to understand that this is only part 1 of a 2-part success story. If it’s successful I then move to high-dose chemo and autologous transplant. The success rate of that (combined) procedure is 60%, meaning there is no recurrence (I think this is measured on a 5 year timeframe but not totally clear on that piece). Anyway, taken together this gives a 30-35% overall success rate for second-line chemo + high dose chemo and transplant. That’s really the number that I think matters. I ensure everyone is clear in their descriptions because numbers are thrown around without definitions, which is maddening. There’s a bunch of fuzzy parts to those rates (age, attitude, strength, my specific mix of cells; 3b, 3a, not sure about gender, etc), that I’ve not been able to segment out. But triangulating all these opinions the overall rate is likely somewhere in the 30-40% range, maybe 50% if I put on rose-colored goggles. Turns out that a mere 3 years ago second line treatment was the last standard care option and if you fail that (at least with a DLBCL diagnosis) the outcomes are poor. Only recently has Car-t therapy started to offer a (very expensive, $500K) third-line option. I’ve been told that should be encouraging news and take some of the pressure off. Easier to say than to actually feel.

I want to get to a place where the autogenic stem cell transplant is an option as that provides a curative outcome with long term data (30+ years). Again, it’s not the transplant that’s curative but rather the high dose chemo that precedes it (think: rebooting your computer hard drive). The transplant is a means to repopulate my stem cells after they’ve been destroyed by chemo. By the way the reason they don’t jump right into the high-dose chemo (I asked) is that it’s not likely to succeed if the second line didn’t show response. Also, they wouldn’t use radiation to zap the tumor here either (I asked), as that would be a local solution to what’s a systemic issue. Makes sense.  In case you’re curious this will be assessed with CT/PET imaging and then a system called Deauville score.

Car-T & side effects:

It seems there is not much data on follicular grade ‘3b’ for CAR-T therapy, the current somewhat questionable diagnosis based on first pathology report. The response rates for DLBCL 3rd line are about 35% (I’m hearing different numbers here so I’ll verify with Stanford). Also it turns out there are 3 drug makers of CAR-T  treatment that all differ in terms of how they are engineered and the side effect profiles. A Gilead/Kite version, called Yescarta is used by Stanford and apparently hits the cancer hard and fast, with a high initial toxicity profile. On the other hand the Novartis and Juno versions are used by UCSF and are slower acting, over 6 months I think, with lower initial toxicity (there’s something called cytokine storm which doesn’t sound pleasant that seems the main issue, along with some neural toxicity). Essentially the t-cells get infused and stick around longer. I gather both are equally effective and all hit the same target (CD19).

Side effects of chemo:

Me: So what other long term effects might I expect from the high-dose chemo and stem cell transplant, assuming I get there?

UCSF Doctor: “Are you done having kids”?

Turns out there’s a high risk of sterility from the high dose chemo. I haven’t thought deeply about this piece but something to consider. If there’s anything I’m thankful for on a daily basis it’s that I’ve already had 3 beautiful kids. While we do talk about a 4th – at least we have before this (we want 6 more Lua’s!) – I’m happy. This would be even more agonizing if I didn’t feel satisfied with that part and was contemplating treatments that result in effective castration. Of course the normal stuff you would expect is also going to be an issue: weakness, possible nausea, neutropenia, etc., but more severe than first line chemo. Sounds fun.

Nutrition/Integrative medicine:

I asked about this topic. There’s really not that the medical establishment will say about it. No strong opinions on any of it. He told me to see folks at Osher center for more detailed stuff.

Next Steps/summary:

  • I spoke with Stanford coordinator and finally things are moving w/r/t getting that tissue from kaiser and processing the pathology report. I’ll hear from them end of this week or early next week to setup an appointment to come in and review with the doctor.
  • I finally got that referral and am now getting updates from Kaiser after my mini tirade on the phone the other day. For all my complaints they do seem responsive to (very strong) patient feedback. Let’s see if it lasts…
  • As discussed above I’m close to convinced that standard second line chemo is my best next move. I think the only remaining piece is if I get some new information from Stanford regarding the possibility of a CAR-T option. Hoping this happens my early next week.
  • Validate pathology report w/stanford/Kaiser — align on diagnosis specifics and assess if that changes anything.
  • Finalize CAR-T options for 3rd line treatment. Before proceeding I want to know what this looks like in the pessimistic scenario that second line fails. I need to understand several key pieces (outlined below).
  • Decide on which specific 2nd line chemo treatment to go with.
  • Once I speak with stanford I may circle back with UCSF/Dana-Farber to validate everything, assuming any open questions.
  • Align with my oncologist at Kaiser about open questions and fill him in on the
    information from various other opinions. This will happen this evening.

Here’s a list of open questions I’ve been mulling meantime:

–diagnosis validation–
a) second pathology report @kaiser & what’s the status? Is it 3b vs. 3a?
b) Second pathology report @stanford: (1) what’s it say? (2) does anything change w/r/t 2nd line? 3rd line?
c) FISH results are negative – does that change anything regarding odds?

–Referrals & financials–
a) Is referral to UCSF an option for CAR-T (different drug specs: Novartis vs. Gilead/Kite) should we need to go that path?
b) Does Kaiser pay for CAR-T as 3rd line as standard of care or is it only supported in the context of studies ($0.5M)? Reason for asking is based on conversation with UCSF where they suggested Kaiser only would support in research context.

–2nd Line: standard treatment–
a) Is referral to UCSF an option for the autologous transplant? All else equal (are they?) this would be logistically easier.
b) Is referral to UCSF an option for CAR-T, or just Stanford?
c) which chemo? D-HAP vs. R-ICE vs. R-GDP? UCSF says R-GDP is not good for ‘ABC’ subtype as second line…
d) odds of sterility post high-dose chemo? How long to recover if it does?
e) Risks/other things to think about here?

–2nd Line option: CAR-T–
a) odds analysis
b) Scenarios:
– are outcomes worse if chemo fails THEN Car-T? What’s the benefit of CAR-T? pros/cons. Seems it’s mostly about the quality of life during treatment itself (and long term effects, e.g., sterility) more than about the outcomes?
– If go straight to CAR-T are we simply missing a ‘shot on goal’ with chemo? Supposing CAR-T failed would chemo be an option at all or is that option simply bypassed?
c) Is there any concern about actually GETTING CAR-T if 2nd line fails/as 3rd line (waiting list etc)?
d) Are there other trials that I should consider or is the one at Stanford the most relevant (follow up LLS on this piece)?
e) What do we know about my specific pathology (follicular 3b) and CAR-T?

–3rd Line Treatment–
CAR-T:
a) where I would get this? Is a trial necessary?
b) would Kaiser refer/pay for this?
c) is there a waitlist or other ‘gotcha!’ to be aware of?,
d) which specific product would I get (kite vs. novartis),
e) validate my eligibility given the specifics of the pathology report.

–Other thoughts/peripheral questions–
a) China studies? I’ve heard they may actually be farther along than US for this?
b) Thinking about last resorts and allogeneic transplant if 3rd line fails…do siblings need to see if they’re a match? Should I start checking databases/if so when to do that?
c) What if I adopt a wait-and-see approach and sit on my hands for 3-6 months? Let’s talk about specific issues with this:
*Is it that the tumor grows quickly and the tumor burden is higher when I do treat?
*That it spreads (will this type spread too?) and does nasty things?
*might the cancer morph, say from less favorable to more favorable type?
*something else?

Still waiting on next steps…

I WILL get through this.

But I’d be lying if I didn’t confess to the fact that I’ve been having some serious anxiety the past week. I’d have thought that with time things would smooth out and I’d get more comfortable with this situation. But the truth is that as I’ve been recovering my energy and strength (slowly but steadily) I’ve been feeling more anxious. I’m not stressed because I’m feeling bad; I’m stressed because I’m feeling good. Not that I’d want this but paradoxically I think my situation might be easier if I felt worse physically. The differential between how I feel and what I intellectually know about my condition is widening (feeling good, but complicated cancer).

The other piece is that the conversations I have seem to present an ever increasingly bleak outlook – or my mind is spinning it that way. For example yesterday I called the lymphoma & leukemia society (LLS). I spoke to them briefly before starting first line chemo but didn’t get much out of it. Now that I’m further down the treatment rabbit hole I figured I’d give it another try. I can tell there are knowledgeable folks to help guide decisions and talk through situations. I spoke with a very knowledgeable person for 15 minutes to explain my status and talk things through. I’d have thought the path I’m going down is somewhat well understood – one would think that first line treatment has to fail fairly often… and it’s not like NHL is a rare disease (though it is highly variable with something like 60 subtypes). But I was thinking there are more options than may actually be the case, e.g.,

Me: so pre car-t therapy (which was only FDA approved for third line treatment of my disease in Q4 2018) what was the standard course of treatment if second line failed?

LLS: various clinical trials

Me: Really? That’s it? There was no real third line treatment?

LLS: Well that’s why everyone is so excited about car-t therapy. Of course we have no long term data. And there are extremely long wait lists to get the treatment so doing this as second line treatment might be worth looking into if that’s an option…

As a next step LLS is going to support me by connecting me with a clinical trial coordinator. My understanding is they help navigate this world, which includes looking through which ones might be relevant to my specific circumstances. One more arrow in the quiver. The fact that I’m even here writing about this, considering trials is frightening, one of my worst fears. Like in the past when I would think about horrible scenarios this is definitely up there, along with various wartime situations not worth discussing. Frankly keeping this blog has been a lifesaver for me to vent this stuff in a hopefully productive path rather than spinning my brain like some tether-ball around a pole of fear.

Then yesterday I lost my cool on the phone with Kaiser. Turns out I won’t get genetic tests until next Monday, the 21st. That’s over 3 weeks post surgery! While it takes 2 weeks to run this (FISH) study I do not understand why it would take a week to send – or at least start processing – this. I could certainly understand if there was there some backlog due to holidays or some other reasonable explanation, but I have yet to hear it despite my inquiries. I feel like I’m in the dark about what they may (or may not) be working on. It’s incredibly frustrating as a patient trying to quickly sort out treatment options.

Meantime I’m focused on keeping calm amidst this 2 front war: body on one side, medical systems/decisions on the other. For the past week or so I’ve been feeling quite strong (now that I can move mostly without pain in my mid-section from surgery) so I’ve been starting to exercise again. That’s always been my standby solution to challenging times. So I workout and visualize cancer as the enemy. I’ve been doing hard intervals on the bike and some strength training. Sometimes I’ll close my eyes and grind out a hard interval while I visualize defeating the cancer. It’s odd, I’ll admit but it definitely helps address the anxiety. And it’s a great mechanism to help me to assert a feeling of control over this situation; fine, I’m not into judging myself much these days. Of greater importance I’ve noticed that over the course of chemo I gradually drew down my strength reserves. I’m doing what I can to build up those reserves before jumping back in.

An interesting development…

First off I was finally able to get another opinion at UCSF setup for early next week (thanks for greasing the wheels, Mel!).

Then yesterday I got a call from the Stanford doctor that my Dana-farber connection had recommended I connect with (the one she emailed). If yesterday’s post hurt your head you would not have enjoyed this call. But I did. After about 20 minutes of listening to his perspective he’s strongly recommending I go for a clinical trial specific to CAR-T therapy as second-line treatment. Not sure how to think about bias here – are our incentives aligned? As next steps he will connect with my oncologist (who he already knows) and they’ll see if Kaiser would make the referral. Stanford would still need to run an independent pathology report and validate some of the cellular targets (CD19, CD22) and that I’m actually a candidate.

He called into question the stats I’d been given, citing less than 50% odds of second line working when taken along with the autologous transplant. Also it seems the outcome of second line isn’t always as clear as yes/no, often it’s percent response. So it’s somewhat more complicated than has been presented thus far. I must say that despite some sobering information I liked this guy instantly if only because he strikes me as a straight shooter that’s willing to go into details. 

I might have been a bit dismissive based on just the information that he’s recruiting for a study. But something interesting here is that he and I seem to be on a collision course via 3 possible futures: (1) if second-line treatment through Kaiser succeeds, I would see him for the autologous stem cell transplant as that’s also his area, (2) if second-line treatment through Kaiser fails then I would likely move onto CAR-T, which is FDA approved as third-line therapy (and my understanding is it would also go through him), or (3) I do this clinical trial mentioned above as the second-line treatment. 

What to think? At this point I’m triangulating opinions and taking whatever any single person tells me with giant doses of skepticism. What’s especially challenging from a patient perspective is thinking independently about these decisions, they often hinge on asking just the right question of the right person; the issue of unknown unknowns looms large. Therefore trusting one’s doctor is important. But it’s also important to not trust them too much as they have their own biases & blind spots.

The nuts and bolts here are that if I were to go down this road (and I’m not signing up for anything yet), there’s a 50/50 chance I’d get standard treatment vs. the CAR-T therapy. By standard treatment I mean I would get identical treatment as what I’d get through Kaiser – including that I could still choose the specific cocktail. All this would happen at Stanford.

I’m still trying to understand the pros/cons of the various approaches. From what I gather thus far the potential benefits to CAR-T include that the success rate seems quite a lot higher (more than double, according to him), is faster, has equal complication rates (different issues, but equal rates), avoids chemo and all the side effects, and no need for the stem cell transplant if it’s successful. While on paper it’s intuitively appealing to bypass chemo entirely and have my innate immunity kill the cancer, there are so many pieces I still need to understand before bring in any position to decide on a path. 

My head is spinning and the whole thing is emotionally taxing. At this point I’m seeing this as little more than one more (possible) option to weight against standard of care second line chemo. More to come as things progress…

 

 

Biopsy results, part 2

Last night I had a call with my primary oncologist to review the results. Not much has changed regarding the treatment path he outlined earlier. I’ll apologize in advance as there’s a bunch of jargon below that may not be easy to parse. This post is as much to clarify my own thinking as anything:). With that said here’s the current status:

Next steps:

  1. We’re still waiting on a FISH study to verify genetics (specifically expression, translocations etc for myc, bcl2, bcl6). Not sure if there’s anything else they look at. Report should come back later this week/early next. This could change treatment path if it’s different from original ‘double express’ designation. Note, it could only thicken the plot but no point speculating until we get the report. Generally it looks like the same tumor with some minor anatomical differences.
  2. Kaiser will re-review pathology report internally (was nudging hard). He thinks it’s more like follicular 3b, not 3a per the anatomic histological characterization (the staining), but it’s a subjective call and likely somewhere in the middle. I’m still a bit unclear how to think about this terminology as it’s always been ‘follicular’ 3b and called DLBCL. Apparently grades 1,2 follicular are managed paths (not curable), whereas 3+ is still curable, and I definitely am a ‘3’. From his standpoint it seems the designation wouldn’t change 2nd line therapy. He mentioned that CAR-T (where they engineer one’s own immunity) is only an option if 2nd line fails, so that’s another open question.
  3. If 2nd line fails then I would likely move to CAR-T therapy at Stanford. That would still be a curative path. When I asked about cd19 not being on the report (that’s the main CAR-T target) he said it’s not part of normal panel and there are complicated questions of sensitivity etc. that he didn’t think worth getting into. I guess they’d test for it down the line? Again, not sure how the 3b vs 3a designation bears on the situation. But Stanford would run their own pathology report in that eventuality.
  4. We will plan to start chemo within next 2 weeks. He doesn’t want to wait 3 weeks.
  5. R-gdp is his preference on second line chemo protocol. R-ice is the other one, favored at Dana-farber. He suggested choosing the one with lowest side-effects (apparently there’s no test to predict responsiveness). We’ll need to discuss this in greater detail before starting. Likely we’ll do it once the FISH results come back.
Other notes/open questions:
  • It’s good that the cd20 receptor is highly present as Rituxin theoretically should work. He put 2nd line odds at 70% success. Proliferation rate is moderately high, not as high as before – also a promising sign.
  • If this goes CAR-T and it works there is no autologous stem cell transplant needed.
  • I asked about supplementing with bcl2 inhibitors (since that protein is also present on the report as a potential target) and some friends suggested it. He said he wasn’t convinced about clinical efficacy, relevance to this particular situation.
  • All tissue was paraffin embedded vs. fresh frozen. Hopefully this wouldn’t be a blocker on getting any key information that might be needed for say a second pathology report.
  • Is CAR-T avail as second line treatment if 3b or only if second line fails? Worth pursuing?
  • Other paths/options to consider e.g., in-vitro tests etc. before jumping into treatment?

Next up I’m trying to get UCSF and more importantly Stanford opinions scheduled. Wouldn’t it be great to setup a conference call with the various docs so I’m not the one in the middle – is that even an option? Is there some service to coordinate conference calls with busy doctors so patients can make more informed choices?

I’m also thinking about integrative medicine options going into this second line treatment. I haven’t really done much on this front thus far. I’m particularly interested in diet/fasting if only because it’s controllable. The key here seems to be mitigating potential negative impact vs. possible upside since the data isn’t especially convincing when it comes to these areas. No doubt this is a separate post but I currently have 3 areas of interest here:
  1. How’s the insulin response, sugar/glycogen metabolism impact cancer progression? I’ve eliminated any processed carbs, and generally eat low-glycemic carbs but haven’t gone extreme, e.g., ketogenic diets. My understanding is the basic theory is that cancer cells preferentially metabolize glucose (seems that’s at least partially true as that’s the mechanism via which the radioisotope is selectively up-taken by cancer cells in PET/CT scans), whereas healthy cells can use ketones which are basically broken down fatty acids as fuel.
  2. What’s the Impact of animal proteins, especially on lymphomas? I’m no longer eating meat or dairy anyway (I’ll make exceptions if my body craves it). I do eat fish – especially sardines and salmon. Should I eliminate eggs too? Some data I’ve seen suggests meat consumption is correlated with cancer in genera and in particular with lymphomas. Easy to go crazy here. There’s certainly a venn diagram with small overlap between ethical eating
  3. What’s the deal with (intermittent) fasting? I’ve reduced my eating window to about 10 hours per day or 14 hours fasting per day. All that means is that I stop eating early in the evening and start around lunch most days. Seems a good 80/20 solution to this from what I’ve read. I haven’t gone beyond 24 hour water fasting but there’s apparently lots of interesting info around this that I’m not up to speed on. I’m doing that while not trying to lose weight but I’ve lost 3-4 precious pounds in the past two weeks. Surgery involving moving my intestines around probably didn’t help there. Also this has been easier than usual because my appetite is complete crap, so I may need to rethink this. Again the key in all of this is remaining pragmatic and not over complicating it. All the above are fairly simple to implement, relatively non-controversial, and with little downside (Keto is the only one that fails this criteria but still seems interesting). Anyway I may find a specialist that focuses on this.

The oncologist wanted me to leave the call still feeling encouraged at the chances and that there are many options still available. So of course, one decision at a time. Meantime I’m doubling down on efforts to stabilize my perspective with meditation. Things are getting harder and I can tell my anxiety levels are increasing (at least I’m aware of it!). It can sometimes feel like each new piece of information is pulling reality out from under me. The key it seems is to achieve a much higher degree of comfort with uncertainty (or impermanence, if you prefer), which is especially hard with a family.

Finally, amidst all this I’m going to try damned hard to enjoy the next week+ to whatever degree possible before I jump back into treatment. Seems the best case is I’m on the other side of this just as the kids’ school year is ending. That said I’ll know around March if second line has been successful; that’s my Q1 objective. I’ll try to stay encouraged that the treatments are all curative and that two opinions mostly align in terms of second line next steps.

Biopsy results, part 1

Friday morning I got a call from a 617 number. My phone was across the apartment and I nearly missed it. Out of breath I pick up the phone. HelloHi Ari it’s Caron… It was the Dr. from Dana Farber for my second opinion. She got the results through the automated ‘EPIC’ system. Wow I haven’t even connected with my own doctor about it yet. We talked for 30 minutes. Here’s the current situation:

First off she had some questions about the pathology report as there were some conflicting pieces or at least open questions. She recommended getting a second pathology report at Stanford (she reached out to a colleague there so we’ll see). Also they classified the resistant cells as ‘3a’ (called follicular) vs. the original ‘3b’. Essentially these are slower growing cells with a different profile, don’t ask me specifically how they differ as I’m not there yet. I’m still wrapping my head around what it means, exactly how many populations exist, etc. This likely won’t have implications for second line treatment but it would impact next steps if second line fails.

She mentioned that whenever first line treatment fails she gets concerned. I asked what percent of the time it fails, she said somewhere around 20-35%. But she also left the call emphasizing that I should feel like there is still hope and that I should remain optimistic. Even if it is follicular there have been lots of innovations in the past 3 years on this front. Specifically there is a new treatment called CAR-T which basically removes a patient’s T-cells and engineers them (by adding new genes that code for specific proteins) to recognize and attack the cancer. Of course this depends on what targets are available and whether the T-cells can be engineered against those, but I’m getting WAY ahead of things here. Anyway if this is follicular it seems there is no CAR-T option (at least not yet). So confirming the pathology report seems important assuming there is sufficient tissue to do that, another question.

The ‘good part’ about where things stand based on this opinion is that second line treatment is mostly standard and aligns with what I mentioned in a previous post: 2 rounds of another type of chemo; assuming that works it’s followed by high dose chemo (wiping out the stem cells) and finally an autologous stem cell transplant to repopulate the stem cells. This is still a ‘curative’ path with a decent chance of success. What’s decent? The second line treatment success rates seem to be somewhere in the neighborhood of 50%, maybe better (I’ve heard 50% to 80%) based on what the docs have told me thus far. By the way that means 20% to 50% failure rate. For folks aware of prospect theory (see the chart p.279) the latter framing is WAY more scary because we are loss averse creatures. Doctors are smart in focusing on the treatment success rates.

But regardless my anxiety level spiked after the call despite that it reinforced the likely path forward…or maybe because it confirmed it?….or maybe it’s reality sinking in that I’m signed up for at least 6 more months of treatment…or maybe it’s that having more details brings more mental overhead and uncertainty? Or perhaps the real issue stems from the overall trend that when I dig in on these conversations it not only confirms my own ignorance (that would be fine!), but our collective ignorance in treating this disease. We’re smart but still groping in the dark. For all the stats that get thrown around when it comes to making decisions we don’t get to average results over multiple treatments. We each have only one body.

I’ll discuss these results with my oncologist this evening. More to come…

 

Waiting for biopsy results (been here before)

I’ll get results as soon as tomorrow or early next week.

Meantime I’ve been getting second opinions setup. It’s time consuming. So far I’ve got a meeting setup with Dana-Farber in Boston. After some back-and-forth we agreed to do this by phone (it was originally supposed to be in-person). This will happen once the results are in. I’m also working on Stanford but this requires a referral from Kaiser that is not likely to happen (even if I’m paying out of pocket!). I’ve got low odds on this one happening in any reasonable timeframe as appointments are booked a month out. I’m hoping to be well into second-line treatment by then. Finally I’m also setting up an appointment with UCSF. Yesterday I had to drop off cd’s of my PET/CT results at the UCSF hematology center (yes, like by hand – it still works that way). I was struck by the contrast of gorgeous SF bay area views from the Parnassus campus against the cold reality that most folks in the waiting room were getting bone marrow transplants (masks required just to enter the waiting room). I appreciate these views – don’t get me wrong – they are stunning. But it almost feels like this sort of activity should all be happening somewhere else. Somewhere subterranean. That would better reflect my levels of comfort with the whole thing. It’s like view magnificence is inversely related to the gravity of the situation, to how mentally trying it is. It feels like a balm or numbing agent, much as I appreciate it. There’s a fighter’s mentality that can easily get lost in too much beauty, certainty and comfort. That mentality is required in situations like this.

Imagine something that stressed you out: those envelopes for college admissions that came in the mail (fat or skinny), waiting for exam results, 360 performance reviews, or getting on the scale each morning if you’re trying to lose weight. Or choose your favorite form of suffering. Then raise that feeling literally to the level of life and death; like poor test results equals “you live” or “you die”. It requires some adjusting. I could never get comfortable with fate coming to me in an envelope or a phone call. Usually one has an indicator of how they did, or at least how well they prepared for that exam. Here though, preparation is not related (or at best is least loosely connected) to outcome.

But our fate isn’t sealed! It rarely is. I find it helpful to think that the plinko chips of circumstance sometimes get nudged (sometimes hard) in a certain direction. How one deals with the circumstance is of equal or greater importance than the circumstance itself. We play the hand we’re dealt. I’m bracing my mind for bad news (good news takes care of itself!). No point in wishful thinking here. I’m nervous. But it’s not as bad as I might have thought. I’ve had some time to acclimate to this new normal. I’ve already absorbed some hard blows so I know what it feels like. That doesn’t make it easy. But maybe it’ll sting less.