It’s 5 days since my first infusion of MK-3475, Merck’s anti-PD1 immunotherapy drug, in clinical trials for non-small cell lung cancer and melanoma. It’s been fast-tracked by the FDA for melanoma, so if the data is smashing, it could be approved very quickly (for melanoma). While I think it’s a good thing that three large pharma companies are racing to be first to market with their anti-PD1 or PDL-1 drug, I hope safety and thoroughness aren’t being sacrificed. We all know that many long-term side effects can’t be discovered until way down the road, but I wonder if there aren’t markers early on to point to possible problems.
I’m vigilant as regards pneumonitis. I’m already short of breath, and it has not improved, which worries me. Of course I have a couple of pulmonary embolisms… I really just wish I could know sooner rather than later if this is going to work. No such luck, I’m told. One just can’t know if it’s working or not, at least not right away.
I’m exhausted. Seriously, like run over by a Mack truck and beat with a baseball bat. I can sleep standing up, it’s that bad. The night after infusion I had severe chills and my already off-the-scale pain escalated into the stratosphere. Today is the first day I’ve had any relief – I’ve increased my morphine dose by half and am now taking percocet simultaneously (there is no such thing as breakthrough pain – I’m already there, all the time). Worse pain? Apparently things could get worse before they improve – inflammatory response and all that. I’ve heard others are also experiencing increased pain… and itching. Yeah, more itching all over. So I can’t get comfortable, as sleeping on any part of my body for over 4 hours produces excruciating pain in that area – heating pad, pain patches, cushions, etc. notwithstanding. I haven’t had an unbroken night’s sleep yet. I sound like a mental case.
Thankfully, cannabinoids are allowed. Hurray, cannabis isn’t illicit! I just have to muster the energy to make something. Am working on that tonight. Topical application of cannabis-infused olive oil works fairly well, but is very temporary and I don’t have much of it. I’ll have to source it in larger quantities to be able to use it as a massage oil. Also helps the itching. So that’s immunotherapy so far.
Meanwhile, the Christmas season, like sand, is sifting through my fingers. Time just laughs at me. Energy laughs harder. They conspire to keep my eyes from being open long enough to accomplish anything as seasonal as sending cards or shopping for gifts or even making food. Resistance is futile, I should just give in.
So, edibles recipes. I’m thinking shortbread.
This isn’t new, and it could be improved a great deal, but it gets to the not-very-exciting point. Needs a more colorful makeover maybe?
I feel like crap. I’m quite nervous about this wash-out period before the trial. I think I had a similar period prior to the last trial, but I wasn’t having complications… or was I? I wasn’t that far from intervening therapy though, only a couple of months. I had an oncologist who was paying attention.
Maybe the blood thinner is what’s causing the headaches, and the stomach aches. The pain is really escalating. Tuesday just can’t come soon enough, and I have to drive myself to and from treatment! Well, that’s because I’m staying the night at a friend’s house, otherwise I could probably have someone take me.
I had very little motivation today. Did some chores, watched a lot of Christmas movies. Just felt yukky, tired, in pain, short of breath. I’m seriously tired of feeling ill and not being able to get a full night’s sleep.
I hope and pray anti-PD1 treatment works. So many people have died this month on my online cancer forum, it’s hard to be perky. I find it ironic that all the nurses at the hospital marveled at how cheerful I am. You’d never know it by what I write here. Strange, isn’t it?
This may become a rambling, stream of consciousness, meandering post. I’m writing on my phone as I descend into the mists and hollows of painkillerville, from a hospital bed in a room with a view which i now can see only because my roomie checked out. I’m on the far side of the room, with a lovely view of the hallway. This is my first hospitalization ever. I’ve landed here due to – surprise – pulmonary embolism, aka blood clots in my lungs. No surprise actually, it’s somewhat inevitable, but I’m still disappointed. Lung cancer patients have something like a 70% greater risk of getting them than other high-risk folks, including cardiac patients with leaky heart valves, though maybe not post-orthopedic surgery patients. Cancers secrete many pro-inflammatory substances, among them pro-coagulants, hence the high risk for blood clots.
Staying active and hydrated, taking aspirin, wearing compression socks when traveling, etc all contribute to preventing clotting events. However, at some point it seems bound to happen, especially to those with advanced disease and, I suspect, who are heavily pre-treated.
I’d been feeling lackluster, experiencing more shortness of breath (SOB) than usual, but recovery was quick and I chalked it up to progression. Being winded by the routine airport traverse of parking lot-ticket counter-security – boarding gate was a surprise/disappointment but the general conclusion was that I probably wasn’t quite healthy enough to go Nashville. I went anyway and it was alright, except for the two arctic storms which rolled in back to back the last day there. Anyway, lack of stamina and low energy levels exacerbated by an ill-suited travel companion amplified my awareness that I was heading downhill fast and maybe should’ve stayed home in favor of completing clinical trial screening procedures in order to begin treatment a week sooner. Brilliant, Captain Hindsight!
I went to ucla for a battery of tests on the 9th. A looong day without pain meds, capped by a 3-hour drive home. I popped pills, went to bed, disregarded phone calls that came in at 9pm. Turned out to be the UCLA doc, calling about the blood clots. Thankfully he emailed. Per Murphy’s Law my printer was on the blink and Hub, having now caught the flu from being run down, drank NyQuil and crashed while I was almost in tears trying to print the scan report and figure out who could go to the ER with me. It was almost midnight on a Monday night. He angrily got dressed, slugged down a shot of espresso and brought me. Thanks to technology I was able to email the report to the ER doc. A resident came and did her assessment, wrote it up and her supervising doc seems to have approved it. I got in at 12:15 and by 4am I was barely moved to a hospital bed. Once settled in I sent Hubs home – he looked miserable and felt worse, I’m sure. The orders were released around 5 and I finally received my first shot of Lovenox, a warfarin-free “blood thinner”, along with some morphine and all the usual pills I take. I badly wanted to sleep but it was not to be. Between breakfast and what seemed like an endless parade of people taking vitals, then blood, asking questions, checking my skin, etc. I was convinced there was a conspiracy to keep me from sleeping. I will say, however, that the nursing care was cheerful and efficient, and the food not bad. Eventually I just passed out until another resident came in… who was the antithesis of the ER resident (who only wanted to follow the UCLA onc’s orders) and was obsessed with defying the orders. I was so annoyed but had confidence that my local oncologist would do the right thing. And he did.
I’m home now (got home Wednesday night). I now have to shoot up Lovenox twice a day until the pharmacy gets in a supply of Xarelto, an oral, non-warfarin blood thinner. I have friends who inject themselves with insulin every day, so I won’t complain. I have bruise dots at all my injection sites, but mostly I have to remember that I’ll bruise and bleed easier, and will take longer to clot, and must be very careful of injuries. I’m just glad I have this option, which is a much costlier one than Coumadin, but superior for lung cancer. The other choices are Arixtra and Eliquis. I’ve not done the research to know the difference, but I’ve always been clear on the fact that Coumadin is not a good choice for lung cancer, that Lovenox or similar is always indicated. I’m grateful for not having to argue with the internal medicine resident – I just couldn’t understand her resistance to alternatives and her obsession with using warfarin. And I’ve just heard that it takes months – MONTHS! – for pulmonary embolisms to resolve!! So I’m still in danger?!! I feel much better today, having more energy than I’ve had in a month, it seems. Maybe a product of getting enough sleep, or of needing to care for a sick Hubby. Hmmm.
I’m now off Tarceva (TK inhibitor/chemo pill), being in the (scary) wash-out period prior to treatment. I start the trial on Tuesday, 12/17 at UCLA in Santa Monica. Hubs won’t be with me, so it’s daunting. The infusion is 30 minutes, after which I hope to stay the night at a friend’s house since I have to return for bloodwork late the following day. I imagine I’ll have to stay the second night too, as I’ll once again be in rush hour traffic. I hear side effects don’t happen right away, which isn’t heartening, as he may still be away when they kick in. I may have to lean on people, which is rough, it being the holidays and all.
Speaking of holidays… all the days between Thanksgiving and Christmas seem to sifting away like sand. I was hoping for a different holiday season than the past few years, but it doesn’t appear to be so. Looks like another non-decorated Christmas, mostly because of all the activity and the lack of manpower to put and take down decorations. Oh well…
I’ve blown it by not posting the past three days but I feel adjudicated by reading The Cuckoo’s Calling by Robert Galbraith (JK Rowling’s alias). I’m not finished but it’s an enjoyable read. Lots of explanatory stuff, very little action. I’ve not felt great, which I’m trying to get over by Thanksgiving. Good and bad days are unpredictable, in spite of the painkillers, heated blankets, sunny days. Acupuncture helps a bit, but the current set-up makes it difficult to receive the amount of treatment needed to establish pain control. With me it’s an evolving and complicated game of whack-a-mole for which consistency is critical. Alas, I’ll deal with what I have and hope for better days soon. I’ve got 5 acupuncture seeds in each ear and 3 on my right hand fingers to help with my breathing and skin toxicity. I need about 20 more for bone pain…
The biopsy results are in… my tumor tissue (from the collapsed left lung, no less) is PDL1 positive! Whether this is a result of chemo or Merck’s different assay (as opposed to Genentech’s), I hope it’s predictive for my response. A few more screening tests and with any luck at all I can start the trial.
The biopsy was a feat of efficiency, done at Ronald Reagan UCLA Hospital in Westwood (LA). From the valet to the cafeteria, I was impressed by the precision of the hospital’s well-oiled machinery. My nurse from Yorkshire (Leeds, specifically), England chatted cheerfully about her travels, set me up on the CT scanner bed, and injected a cocktail of morphine and Versed (midalozam) into my IV. I don’t know if the amount was insufficient or the lidocaine applied topically to my chest hadn’t taken effect, but I definitely felt the stab through my lung when it came. Yep, I surely did. The resident who performed the procedure (a handsome young guy named Dr. McGraw) told me to take a breath, hold it, then plunged the giant needle in my chest (through the front, Pulp Fiction style). Once the thing was in he left it there, intermittently dropping tubes for samples. (Hubs says it’s much like drilling for core samples, though with more primitive implements) He clipped away as if he were pruning roses. I wanted him to start whistling but he didn’t. Then it was over. I was alert and ravenous, eating ancient flight pretzels from the bottom of my backpack, orange slice candy, whatever I could get my hands on. The doc came in to check on me, shoved a heated blanket roll under my back to keep me on my side and said an x-ray wouldn’t be done since, well, the lung was already collapsed. We chatted a bit about the difference between PD1 and PDL-1 inhibitors, what was edible at the cafeteria, then he wished me luck and for all I know went back to his office for Playstation.
Now that I’ve cleared that hurdle I’m faced with a bit of dilemma. A slot in the (Clovis) CO-1686 trial – the one I’ve been waiting over a year for – may open up in the next two weeks. It’s still in Phase 1 dose escalation, but it’s so close that I’d rather risk getting on now rather than continue waiting till it reaches Phase II. As I’ve mentioned before, I believe my chances of response to that drug are much greater than to the Merck Anti-PD1 agent – which is the clinical trial I’m about to embark upon. I’m in a quandary, because starting the Merck trial would prevent me from the Clovis trial for now, and possibility of response is only 24%. BUT, response could be durable, lasting over a year. There are also scary side effects, whereas the Clovis drug has mild to none. The duration of response to CO-1686 is in the range of 6-10 months but it’s a blissful, if short period, I hear. I’m torn.
Hubs has a business trip to Nashville and I may join him. If I don’t make it to the end of the year at least I can say I went on one trip in 2013. For now I’ll focus on giving thanks for a good run, and remember my Dad, who passed away exactly 6 months ago on the 28th. I’ll light a candle for the fallen, say a prayer for the lost, and rally the universe for grace to blanket each one of us. May we transcend the darkness, each in our own way.
Love to all.
The garden chimes announced the wind after which the clouds burst open and let fall their payload. I look forward to my hill being clad in its green winter garment, studded with boulders, bejeweled by stars and the full moon. Fresh air is so rare here – this is the season to breathe. Of course it’s also the time for hot chocolate, movies, a good book, kitties to warm one’s toes.
The house is silent save the patter of raindrops. I had a strange dream last night – Anthony Bourdain was in it (perhaps symbolizing the search for good food or anticipation of Thanksgiving)! I skateboarded a ramp briefly and made a deep connection to a kind, talented, loving potter (ceramic artist). It was strangely wonderful and as I bask in its afterglow, I realize the joy of the dream allowed me to transcend my body’s physical pain. The power of compassion and happiness in the dream force me to reconsider meditation as a way to overcome physical barriers. I saw how crucial the exhilaration of physical sport and the peace imparted by artistic creativity is to my well-being and continued survival. It is astonishing how inner joy affects us. The dream had mundane and nonsensical components as well, which I recall, but no matter – the lingering power of loving kindness lifts my heart.
In a dream, I was given a box of rain.