Turns out the pathology results from the core needle biopsy last week didn’t make it to The Angeles Clinic by late Friday, so they pushed back the start of the trial to Wednesday or Thursday. I should definitely start this week, though.
I’ve had chemo infusions that took 5-6 hours but this will be a new record for time in the infusion chair. The actual treatment itself is 30-60 minutes, but I’ll be at The Angeles Clinic for at least 8 hours for each of the first two treatments (which are two weeks apart). There are more checks up front (more blood work, etc.) than in chemo, and after the infusion they check the level of the drugs in my system every two hours. I asked what I should bring (besides my laptop and lap desk because duh, 8 hours) and the trial coordinator said at least one meal, snacks, water and a blanket. So it’ll feel like packing for some kind of bizarre drug-themed picnic.
This really is going into the great unknown.
Side effects for immunotherapy are always all over the map. Some patients respond almost immediately, some take up to several months to respond, and many don’t respond at all. Some patients have significant pain at the cancer locations because their boosted immune system attacks the cancer aggressively–and in a few cases, the cancer’s dissolved so quickly people actually notice swollen nodes melting away. Side effects are generally milder than with chemo, but they’re also unpredictable because you may have a reaction to the drug OR your immune system may go into overdrive and begin attacking your own body. Also unpredictable: when these reactions might occur. Unlike chemo, where you can expect the worst side effects over the 2-4 days after infusion and the effects to be cumulatively worse over subsequent treatments, with immunotherapy the side effects can come at any time–even after months of treatment with no side effects at all.
To make things even more interesting, I’m joining the trial at Phase 2, which means they know the combo of drugs meets a marginal baseline standard for both effectiveness and safety… but beyond that, all bets are off. Immunotherapy combinations tend to ramp up both the effectiveness AND the side effects. Since this is a new combo, it’s anyone guess what the balance of effectiveness and side effects will be for each patient.
One of the most dangerous side effects in immunotherapy and especially combo immunotherapy is life-threatening, sudden onset pneumonitis. Dr. Ani and I are both aware of that possibility. I think I only made it into the trial because my breathing issues after the lung radiation were never severe enough to require oxygen support. It’s something I’ll be watching really closely. If I start having breathing issues that mimic severe pneumonia, the key is to instruct EMTs or hospital crew that I need high dose steroids via IV, not antibiotics.
Despite all of this, I can honestly say I have zero hesitation and zero fear. I named my first cancer blog post back in 2012 The Next Great Adventure. Sitting here today, I have nothing but eagerness to start the trial, curiosity over what will happen, and thankfulness for all of the people in my life who’ve helped me and who make this journey easier in a million ways.
So thank you, all of you. Let’s get started on the next “next great adventure.”