Sorry, I left you all in a cliff hanger! My primary oncologist replied that I should sit tight and wait on the scans and not expedite things, that I would get all the radiation exposure without meaningful information if we did this earlier. So I’m waiting. The symptoms have basically stayed the same: still feeling consistent back pain but at least it’s not worsening. And I’m still sleeping too much, 9-11 hours/night. I’ve been unable to wake up before 7am which is very out of character. I’ve heard the effects of chemo can stick around for 6 months, so some lingering poison might be part of it. Also I’ve had mild underlying sickness from the kids. So I’m going to lay low and trust in the 4 aligned opinions for now. I’m picking my battles and laying low for now.
Additionally, about 4 days ago I got an ingrown toenail on my big toe. It’s been pretty painful but not a big deal. I emailed my oncologist, asking what I should do. I finally got a reply today. Though I’m not neutropenic I still need to deal with this. The main issue is that lymphoma is a problem with the immune system. As such infections need to be taken seriously, even if I’m not currently neutropenic (which I’m not). So today I’m headed into urgent care to see what they can do.
And I got the upcoming scan setup. I was able to finagle a bit and it’s scheduled for 3/5, right when I get back. It’s like something out of a bad movie. I can see it cinematically: lush Hawaiian landscape fades out as the camera pans across the shimmering ocean, gently waving palms at dusk. Cut to clinical scene with harsh fluorescent lights glaring on me, as I’m dressed in an ugly medical gown.
Over the weekend the kids had friends over and they watched ‘Ninjago’ (it’s awful on so many levels – I don’t have the patience to discuss here). I can’t believe I’m a parent that allows this stuff in my house. I cozied up with them, eating my homemade popcorn if only to snuggle a bit. One of the subplots revolves around a tense father and his son relationship, akin to the one in Star Wars. When it was over the other kids went to the room but Lev stayed back, lying on the sofa. He was obviously holding back tears, his tiny body has no room to hide large feelings. I sat with him for a few minutes rubbing his back. He put his arms around me, squeezing hard, his smooth cheeks on my neck. Then he started wailing. We probably stayed for 10 minutes like that. He didn’t tell me what it was about, but I know it pertains to my health; these feelings and concerns have to come out somewhere.
After that episode it occurred to me there hasn’t been much crying or discussion around my condition lately. We’ve focused on nuts and bolts (e.g., daddy goes to the hospital today, daddy will be tired for the next few days) after the initial conversation. I’ve tried to keep things smooth around the house to whatever degree possible and to avoid putting unnecessary anxiety on them. Now I wonder if that was the right move, or if it’s just percolating inside them. Maybe we should talk about it more? The last thing I’d want is some unhealthy long term response because we smoothed things over in the short-term. Monitoring this vigilantly.
And to be clear, sadness is a very appropriate response to life. Even if things are great. That doesn’t mean one should mope! But in my opinion reflecting on it helps bring gratitude for what is, and a sense of urgency make things happen. We should strive to be well-calibrated to reality. I appreciated Lev’s openness with his feelings as he struggles to understand them. It seemed really healthy.
And it’s been nice to continue getting some feedback on the blog (it’s emotional rocket fuel for me to keep it going). Seems to be causing some nice ripple effects and I’m pleased that this crazy journey can in some way be helpful to others. Here’s my favorite piece of recent feedback. Randi – thank you for sharing this and thinking of you as you get deeper into treatment (and hope this gives you a small boost for whenever you catch up!).
I was connected to your blog through my massage therapist in Rhode Island who is friends with your sis, Ilana. *Thank you* for your blog and for your intimate thoughts and feelings. It has been so comforting and validating for me. Must admit that I haven’t gotten too far in the reading. I am at September, 2018… Oftentimes I will read, reread and read again because the words resonate so much with me. So because I am not at February, 2019, I am not sure where you are in your journey, and I don’t want to “cheat” and read ahead. I hope you are doing OK. You are helping fellow cancer patients, like myself, to *push* ourselves on a spiritual, emotional and physical level. On days when I just don’t feel like pushing, I think of you.
Meantime I’ve joined a few Lymphoma Facebook pages to both get some questions answered, as well as to support others going through this. All the info I’ve been learning seems to be coming in handy to that end. Knowledge should never go to waste.
Visiting colleagues & getting back to physical health
I biked to SOMA the other day for the second time since diagnosis. It felt great to do my work commute, if only to convince myself for a few minutes that things are back to normal. Also it was good to see I could still do it!
I visited with my very impressive colleagues at Tophatter (think eBay, but much faster). It was invigorating to spend a little time catching up on all the projects I’ve been missing. Many of us congregated in the communal kitchen area for several hours – I definitely dragged worker productivity down a good 50%! But it was worth it. I was reminded of the a privilege it is to work in one of the epicenters of technological innovation on the planet. More fuel!
In other news I’ve had my mom in town for a few days which has been great for the kids. They love their ‘damas‘. As a quick aside she is the one that actually kicked off the whole conversation that I should get that mystery mass checked out last year which, very foolishly, I ignored for weeks. She also secured my Dana-Farber connection. Recall it was this connection that recommended the second pathology report. So in a real way I wouldn’t be in the favorable position I’m in right now without her help. Love you mom, I know it doesn’t always come through but you’ve been essential to the good fight I’ve been waging. And all this has enabled my to try and spend more healthy time with the kids.
Anyway, I bought a 7 day package at a yoga studio the other day at Michelle’s suggestion to see if that helps with my back issues. Since my mom is here, she watched the kids while Michelle and I did a yoga class together. We hadn’t done something like that since before kids and it was physically helpful, emotionally invigorating and a great way to connect with each other. My back felt ever so slightly better this morning. I’ll be taking advantage of this and getting my yoga in as I prep for Hawaii next week.
It’s just what the doctor didn’t order, though I wish he did.
I used to reserve the word nightmare for something terrifying that lasted a while. The line between nightmare and non-nightmare was obvious. But I don’t know where to draw that line anymore, it’s so blurred.
For example, take last night. In it there was a scene in which I was flagged by those around me as Jewish (‘vermin’, to be executed) by the Nazi-like society in which I somehow lived. To cut a very long and winding story short I watched the executions happen to others, not me – yet. But they were catching on to me and closing in. Instead of gas chambers (so 20th century) the destructions were personalized. Folks were put into scuba-like apparatus and would inhale the vapors while staring directly, unblinkingly at me. I remember the staring directly at me part since it was so vivid and peculiar. Folks would count the breaths and they would lose consciousness after 8 breaths, plus/minus two, while scientists stood by with clipboards. I remember deciding that I’d prefer to swim to my death if it came to that. Better to have the illusion of freedom than certain confinement if the outcome was to be the same.
In another dream (or scene, hard to say if they were connected) I was actually swimming in the expansive ocean. Then suddenly the surface breaks and it caves in a giant waterfall with the destructive power of a hydrogen bomb. I’m instantly sucked into the great ocean depths, falling for seconds (another peculiarity, remembering that). But it didn’t kill me. The deafening roar of massive waters rushing past fills my head. But I was still, miraculously, in the world of air. I was inexplicably living in this hostile and environment thousands of feet beneath the ocean. How else to describe this but that I was in a state of complete surrender. And I was just waiting – at any moment the tides could shift and consume me – was it a matter of seconds? Enough to hatch an escape plan? Or should I just savor my last moments?
These kinds of nightmares used to affect me deeply. But now I look on as an observer, mostly amazed at the stuff my subconscious comes up with in attempts to make meaning. The underlying content is of course a reflection of my current position and is so thinly veiled as to barely require interpretation. No, what’s frightening to me is the lack of impact such stark dreams elicit; I don’t think I’m numb but sometimes I do wonder.
These upcoming scans are clearly causing some anxiety. That extra energy seeks manifestation. I suspect dreams are the lowest energy solution for such expression to occur given that (it seems to me) the ego shuts down in that state. That anxiety can bypass whatever defenses my ego has devised – cortical Maginot lines. The fear of cancer progression is real. Still processing.
I’m slated to get these scans done early march. That is, unless I ‘feel symptoms’. Simple, right?
There were three symptoms specifically that I noted just before my diagnosis last year: blockage (constipation, due to the tumor’s location in bowel area), a specific kind of dull back pain due to the tumor pressing on nerves (not unlike pregnancy I suppose), and fatigue. Put me down for 2 of 3 in the past couple weeks. I’ve been on edge as I monitor. For example in the past week I’ve slept 12 hours at least three times – unheard of for me except if I’m sick. The most troubling piece is that every time I stand up I feel this dull pain in my lower back/pelvis area. The only time I’ve felt this type of pain was last year just before my diagnosis. And I’m constantly feeling my abdomen for evidence of tumor. The other day I realized that this might be for naught. It occurred to me that since the tumor is now placed somewhat differently that perhaps it could be growing in different locations – perhaps more towards the back than the front.
These are not encouraging developments. But they’re also not quite enough to get me over the edge to expedite the upcoming scans. There are rational explanations. Lua (2 years old) has been having sleep regressions since moving her in with the boys (yes we did that a few weeks ago and it’s been mostly amazing, dumb luck I think). Anyway that might have something to do with the sleep/fatigue. For example last night I was up for two long stretches from 2am to 3:30. Also I’ve caught whatever has been going around recently from the kids – mild, but still. I’ve been exercising more to build up my strength and I want to believe that’s the cause of the back issues but I really don’t think so. I’m going to try doing more active stretching and light walking etc. to verify it’s not just a muscular thing.
Regardless of these explanations there’s also trepidation (I don’t want to say fear since that doesn’t quite resonate as I’m not deluding myself). I can tell that monitoring this is definitely eating up some mental cycles. I want to enjoy a few weeks of relative normalcy and minimal stress before very possibly jumping into more intense chemo/treatment. The thought of doing another biopsy in case of a poor scan is not palatable right now. Also, and it sounds trite to say, but we’ve had tickets to Hawaii since last year (I booked them just after getting my diagnosis) coming up end of April on Saul’s school break. We haven’t had a family vacation together in quite some time and it feels necessary. Recall our December family holiday was interrupted by my surgery.
I’ve emailed my doctor about this to see how he would think about it, the obvious question is what’s the downside to just doing it now? I haven’t heard back yet but to answer my own question: 3 months is not a long time as far as these things go, hence expediting would increase the likelihood of a false negative result (meaning that the scan doesn’t show meaningful progression because we didn’t wait long enough). That would not be good.
I’m trying to be honest about what I’m feeling, if only to convince myself not to be willfully blind about this. Obviously if this is aggressive then I’ll deal with it immediately. My trigger event at this point is that if these ‘symptoms’ persist or worsen for another week I’ll likely press the issue and move to expedite the scans.
The fear and anxiety come in waves. Most of the time I’ll feel fine. Them BAM!, that cold rush of reality overcomes me… I have cancer! And I can tell my mind wants to go in that direction, to charge with that energy. It’s like a strong-willed child pulling a feeble adult towards the shiny thing. A moment later it’s like I have a backpack filled with rocks reminding me about gravity. Then, the complexity of all that I MUST do, should have done, should be doing NOW rushes in. I’m nearly overwhelmed.
But I know how to meet this feeling. We’re well acquainted. I meet it with a deep inhalation; a circuit-breaker. What else can I do? I’m getting a lot of practice at making that space, creating a pause. And I’m grateful for the practice since it helps push these unhelpful feelings away. This is definitely not an innate ability. No, this is forged from experience. And I’m getting lots of reps.
Sometimes I feel like a bubble floating through the great ocean, inevitably upward to the surface (sketch). Perhaps we’re all bubbles. And once we reach the surface we deposit our contents (soul? consciousness? nothing?) into the great unknown atmosphere. When I’m feeling overwhelmed I try to remind myself that being a bubble is rare and special. And that it’s a privilege to feel anything at all, even if it’s hard. It’s better than popping.
I’ve now got 4 doctors aligned on the ‘watchful waiting‘ strategy. I’m considering that a mini triumph given that 3 doctors were in agreement to jump immediately into intense chemo just a few weeks ago before the second biopsy results came in. I should right now be in the midst of treatment.
So that leaves me in an interesting place. I’m feeling good and regaining my strength. But storm clouds loom on the horizon. There’s a feeling among the doctors that this more aggressive form of follicular lymphoma will progress, it’s just unclear when. One of the keynote talks at the lymphoma society conference last weekend was about stress and cancer. There’s a name for it, it’s called the fear of (cancer) recurrence (or fear of progression, basically it’s the same thing the difference being if one is in remission or not) – that’s a good name. The speaker talked about how much anxiety these kinds of scans can elicit and how that can impact immunity, caregivers, quality of life and etc.The stuff we all know already but worth a periodic reminder. Reading through some literature on the topic it’s not clear that stress can cause cancer; the relationship seems clearer in terms of managing cancer once you have it. For example the National Cancer Institute (NCI) says explicitly,
Evidence from experimental studies does suggest that psychological stress can affect a tumor’s ability to grow and spread.
Imagine how stressed you might have gotten over something like a job interview, big exam or the SATs. You might have even gotten sick around that time (exam time always seemed to bring that on in school). The immune system is complicated (understatement) and anyone pretending to understand the relationship between one’s mentality and immunity is probably lying, except to say that positive beats negative. My friend Geoff sent me over Stephen Jay Gould’s excellent essay, the median isn’t the message on just this topic. The essay is Here’s a particularly germane excerpt:
Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.
I’m feeling optimistic despite all this ambiguity. I’m making it a priority to maintain this attitude as best I can. This optimism is less about blind hope, that an impending hurricane will magically shift course. No, instead it’s rooted in confidence about the house I’ve built being able to withstand the storm. I’ve been challenged with hard things in the past (I don’t have time to go into them – maybe another time). And I’ve survived. In fact I can honestly say that after just about each major challenge things in my life have improved materially. That belief is now hardwired in me. Were any of those challenges this hard? No. Not even close. But at the time some of them did feel cataclysmic (despite being mere blips on the cosmic radar).
I consider those warmups, or simulations, preparing my mind to handle all this. In this respect I’m grateful for all the challenges I’ve experienced until now. It seems to me there’s a compounding effect to handling hard situations appropriately such that each experience carries over to inform the next one. Over time this sums to strong judgment, perhaps wisdom (not that I’m there yet). But these hard experiences are serving me well. I shudder to think what getting this kind of diagnosis might have looked like for me 20 years ago.
In fact these experiences are so important that I’ve started making it a practice to explicitly run through them again to remind me that I’ve experienced hardship before. I need constant reminding that I can do this. Data points.
The other night I looked at my kids as I put them to bed. I really saw them. It was one of those moments, all too rare, where the din of thought quiets just enough for truth to present. As if cleaning a dirty window. I looked on Lua, tucked into her “cornucopia” (wrapped in a large blanket, tapered to a triangle at her feet, the opening a bouquet with all her stuffies arranged around her head). We are small but critical parts of an infinite chain. Our actions ripple into the future.
How much did Michelle and I have to do with this girl’s creation? Everything – after all we are her parents. But also nothing. It feels hard to take credit. I did not design the alveoli to support oxygenation; nor did I invent the action potential that enables neural functions like thought and movement; I did not decide that 5 fingers is optimal for a hand design; and never-mind the immune system, too hard. No, I’m merely the executor of instructions.
Not only did I not invent the parts, but even if I did, to claim true ownership would be misguided. Universe is not static. Yet our minds long for unbending certainty. Ownership suggests permanence. But that’s not how things are; the linguistic sloppiness reflects a cultural fiction. No, we are stewards, maybe guardians, but not owners. This may sound like mere semantics but it’s not. Why does it matter? Because the relationship we have with things matters. This small re-frame matters. It makes the prospect of loss easier to process as it (whatever it is) was never ours to own. And appreciation becomes more accessible in that we’re serving something larger than ourselves.
The point? That rational understanding (strict materialism, all is the sum of the parts) without a sense of awe is severely limited. It’s easy to get swept in the rushing waters of reality. Sometimes it’s worth stepping to the side and watching it from the riverbank. To get perspective. It’s humbling to consider myself the steward of these creations. It helps to come to terms with the fact that I do not control the full picture, outcome. That said it’s inspiring to know the degree to which things are controllable. It’s not all a hot chaotic soup of bits and atoms and no rules. Outcomes can be measured, rationally designed, predicted. Think of the complexity involved in a surgical procedure. Or in an endeavor like the Manhattan project. It clearly is possible to understand, to predict and to ship things that work well. Control is possible. But let’s not forget we are all taking the materials we’re handed: whether genes, molecules, atoms, words. We do not create entirely new parts; we remix.
Upside down is also true
Looking upside down at the world, like in a downward dog or headstand, is a pastime that I don’t get to do enough of. Cars pass by, impossibly attached to the road. People walk on the ceiling like bobbing creatures (try it, you’ll notice). It’s thrilling to have one’s notions of gravity disrupted at each moment. In doing this (admittedly) odd practice one gains an appreciation for the simple truth that we are upside down as much as we are right side up. Coming to grips with that fact is not something we’re in the habit of cultivating. On occasion I’ll do the same thing in the gym where I’ll monitor people’s posture and lifting technique, though upside down. It’s amazing how obvious the issues become if you do this – there’s no end of stooping, knee buckling and forward neck lean to be witnessed.
That perspective helps see where things are flawed. This is not a new trick. The old master painters used to do something similar – they would look at the painting in a mirror, to render it backwards, and the mirror would point out exactly where the rendering is broken. This is especially helpful with portraits where a nostril or eyelid being off just a millimeter is the difference between a smiling Mona lisa and a disfigured syphilitic.
Seeing things with fresh perspective has been helpful as I deal with this ambiguity.
Here’s a video from earlier last year doing rocket experiments with the kids. This was really fun teaching the kids about scientific methods (I’m at the table recording our proportions of various ingredients to see what produces the greatest lift – of course they lost interest in that part quickly). Our actions ripple into the future. We do the best we can with what’s in our control. Then we let it go. Rockets!
Over the weekend I attended a conference hosted by the Lymphoma & Leukemia Society. Turns out my UCSF doctor was one of the speakers. So not only was I only able to learn a fair deal about Follicular Lymphoma but I was able to accost find him afterwards and speak about the updated diagnosis.
His perspective seems level-headed. He agrees with the watchful waiting strategy in the immediate term; 3 months from the last scan is reasonable. He would call the strategy aggressive watch and wait. In his view this disease is not obviously the VERY aggressive DLBCL, but it’s also likely not a Follicular grade 1 or 2, where you have the luxury of treating it as more a chronic condition. He also doesn’t quite buy into the dual-population theory that Stanford offered, instead suggesting to forget the grading for now and call it ‘Follicular X’ which he still thinks of as a high risk follicular. The high risk is of transforming to the aggressive type. In his estimation running a third biopsy won’t help clarify the picture. We’ll know more with the next PET/CT – that’ll be a more definitive data point. That scan will present one of the following 3 pictures:
it doesn’t progress – which would strengthen the 3a grading and further support confidence in the strategy to ‘watch and wait’
it progresses in a predictable fashion – which (I think) means we treat as follicular with some chemo but I don’t understand enough about this.
it progresses in a new pattern, e.g., new disease. This would require another biopsy to understand the cellular composition. From there we would discuss options – likely a similar set of decisions to what I’ve been contemplating regarding standard of care vs. some form of clinical trial. We’re not there yet.
The other piece of ambiguity (as if there wasn’t enough) is that ‘3a’ follicular tends not to get included in most studies as it’s somewhere in the middle: not clearly aggressive like ‘3b’/DLBCL, nor is it clearly indolent like Follicular grades 1 or 2. So the treatment paths aren’t clearly defined.
I still have a few pieces that need shoring up – specifically follow on conversations with other doctors. Assuming no major new information comes to light I’m bought onto the strategy to wait a few weeks for a scan and not jump into treatment right away. Part of the reason I think this is I’m for the moment asymptomatic, I think. I’m trying to be as attuned to my physiology as possible so that I get the earliest possible scan should something feel different. I remember what it felt like (fatigue, back pain) before my original diagnosis. What’s unnerving over the past couple of weeks is I’ve been feeling some of that same back pain and fatigue. How much of this is psycho-somatic or remnants of the surgery I couldn’t say. I’ll remain vigilant on that piece.
The other part is that I’m bullish on the medical/drug innovations on the horizon. I think of it something like the sketch (left). Specific to CAR-T innovations I suspect toxicities will come under better control; targeting effects will improve by getting more specific and yet more varied (think e.g., targeting 2 cellular domains instead of just one); and the longer-term effects will be better described. In terms of the drivers toward innovation there are at least 3 drug companies engineering CAR-T cells somewhat differently and vying for a foothold on a massive oncology market. That, combined with fierce competition and the desperate patient need will drive this forward.
I also learned in this conference Follicular lymphoma is starting to get worked on, though is still in very early days. The reason it hasn’t been the initial focus is that it can be managed with other strategies whereas DLBCL options are much more limited. Fair enough.
So based on the conversations I’ve had thus far with my ‘panel’ my likeliest strategy for now is to sit tight a few weeks to find out more from the next scan, to let the disease tell us what it’s doing. I feel like I’ve taken ONE small step away from the ledge. And very soon I’ll step back up to it. As you can imagine this is all quite stressful (an understatement). But for whatever issues may be lingering in my genome, I can be grateful that a tendency toward despair isn’t one of them.
‘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.
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 toYiddishkeit: Mazeltov! 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.
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.
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:
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.
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.
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.
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.
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…
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…