Postcards from the clinical trial trail

Gorgeous autumn day. Too bad I can’t go for a walk. I’ve a PET scan tomorrow – out in Indian Wells, a desert community about 1.5 hours away (past Palm Springs and Palm Desert). Why Timbuktu instead of the local Kaiser? I saw the “new” onc in Palm Desert again last week, and he placed the authorization – I’m guessing it automatically stays within the local service area if he doesn’t manually enter another facility. I went ahead and scheduled it in the interest of expediency, and it’s kind of a nice drive in the winter. It’s a waste of gas, but better to get it over with. He also made orders to receive cisplatin-vinorelbine (Navelbine), which I discovered requires a central line or port to be placed as infusion is weekly and…takes 7 hours. That’s right, 7 hours. Maybe it’s the cisplatin – it requires hydration before and after. But having a central line means a catheter hanging out of my chest, which I have to flush twice a day. A pain in the ass and yet another risk of infection. Who needs that? Apparently Navelbine burns the skin so a catheter is preferred. The UCLA doc says they infuse it without a central line, but for a weekly infusion it’s understandable. I scheduled placement of the catheter for Thursday and chemo for Friday… and just now canceled the whole kit and caboodle.

These days, everything is in the interest of time, regardless of some other difficulty or inconvenience. Saw Dr. Goldman at UCLAfor the 2nd time on Monday (4th). My brain was a bit scrambled from Carlsbad Girls’ Weekend, but again, I grabbed the soonest appointment available. My opinion of him hasn’t changed from the first. We don’t click, but I’ll give him a chance.  Having never met Dr. Garon but hearing him online and having the Matsunobus’ recommendation, he seems a better fit. For the immediate future, it might be fine to stay the course, since Dr. Camidge referred me to Goldman, and his current plan is okay.

The current plan: Enroll in the Merck Anti-PD1 trial ( agent nameMK-3475/Lambrolizumab) at UCLA, even though it’s available at A. “Merck pays for everything, you don’t even need a Kaiser referral. They will pay for the biopsy; it’ll be done here (at UCLA)”. Adequate tissue will be collected to enable testing of PDL-1 for trial eligibility.  If it returns negative, the remaining tissue can be used for the Clovis trial (CO-1686). My slot in that trial is not with the group that starts the end of November, it’s with the group after that, so mid-December. I assume the biopsy will make the enrollment timeline.

I mentioned the bump in my arm to Dr. Jang and he thought it was the ideal possible biopsy site. Dr. Goldman palpated it and said it’s very rare to have metastasis beyond the elbows and knees. If it lights up on the PET scan, they’ll do an ultrasound-guided biopsy, but he was skeptical. Otherwise he thinks it might be easy enough to biopsy the collapsed left lung. I call that “stabbing in the dark”, but what do I know? I pointed out that I had a small met on the right adrenal which appeared in the January PET scan, but it hasn’t been mentioned in any scans since.

If the tissue returns PDL-1 positive, I could start the trial, but it’s 9 weeks before the first confirmatory scan. Participants are randomized to infusion every 2 or  3 weeks.  I know 2 people who discontinued and 2 who’ve died – it didn’t work quickly enough or they developed severe complications? If I start the trial and am consequently offered the CO-1686 and skip out, I would later be disqualified from trying other Anti-PD1 trials (which makes staying long enough to see if it works kind of mandatory, but may result in losing my place on the CO-1686 trial).  If anti-PD1 works, I could blow off CO-1686 altogether and hope the AZD9291 trial is available at that time.  Ideally CO-1686 will become available before I start, or after I’ve determined MK-3475 isn’t working.

How they compare: Response rate: better with CO-1686 – 70%, only 25% with MK-3475. Duration of response: If MK-3475 works,  response could be durable to a year; only 6-10 months before resistance with CO-1686, although it’s possible the addition of MK-2206 (an AKT inhibitor I tried at UC Davis in 2011) overcomes resistance and prolongs duration. Side effects: CO-1686 wins with no side effects (some muscle ache, I’ve heard); MK-3475 has pneumonitis, colitis (hence diarrhea, etc), rash, pruritis, itching, fatigue…scary stuff, really.

Ideally, the path should go like this: CO-1686 ===>Anti-PDL-1/PD-1 inhibitor ===> AZD9291 ===> addition of 2nd targeted therapy to overcome resistance ===> 3rd generation inhibitor or back to chemo/inhibitor combo (Alimta+Tarceva).

We discussed how I’m doing and I admitted to excruciating pain while still being able to walk 4 miles. I’m really not coughing, but my chest feels tight and not quite clear (my O2 was 100% though). When I bring up how far out I am from chemo (6 months next week), he said, “Stop thinking about that.” He seemed irritated but in classic guy fashion, didn’t clarify – perhaps it should be obvious. Some people need confirmation, however. He might’ve said, Look at it this way: 4 cycles of chemo and continued Tarceva has held you this long – the longer the better – instead of worrying about how long it’s been, rejoice and hope for longer control. Tarceva is probably still effective to some degree and things look stable. So why am I in so much pain? It’s the bones. My point is: our technology isn’t good enough to detect small movements, but our bodies are quick to recognize when things are going south. The scans may say stable but the pain says otherwise.

This week: PET scan, Zometa infusion, wait for rebiopsy appointment at UCLA, they will request my 2011 tissue and have it tested by Merck (will probably be negative for PDL-1), wait for test results from rebiopsy, proceed to a decision. Goldman thinks I ‘ll be okay for the month it’ll take to arrive at the next course of action.  Hubs points out that there are a hundred others rolling in on wheelchairs and oxygen tanks and compared to them, I’m just being dramatic.  He agrees with Goldman that I over-analyze.

As a sidenote, I’ve now tested cannabutter blondies for a week. The conclusion: PROS: great for pain control, appetite enhancement, awesome for sleep, decent for nausea control, average for creativity. CONS: not great for driving, energetic activities, or actions that require cognitive alertness and memory; coming down necessitates a nap, can kill motivation.  Overall, I prefer to use it over narcotic painkillers, but here’s the question: will edibles disqualify me from clinical trials? An exclusion criteria is “Continued use of illicit substances.” The blood test may isolate THC – not sure it’s medically established yet as not “illicit”.  On the other hand, there’s Marinol and Sativex by prescription, so maybe it is.

That’s the glazed-eyewitness news for now!


2 thoughts on “Postcards from the clinical trial trail

  1. You are amazing! You sound like you know as much as any oncologist. Not many people would have the intellectual skills and intestinal fortitude to learn this much about your condition.

    • “Intestinal fortitude” is the operating term here, methinks. I’m mostly writing as a way to sort it out in my own mind and of course, as a distancing mechanism. When I’m in pain I wonder if I’ll make it to the end of the year. When I feel okay, I’m planning trips! I just can’t seem to strike a balance anymore.

      I’m still trying to get to Hawaii!

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