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.