Do I feel better or are the steroids speaking?

Cycle 1 Day 8 infusion of Gemzar and Zometa, preceded by two Decadron tabs.  It was a good day – I got in right away, got a nurse with good IV technique and vein selection (1 poke), the oncology pharmacist prescribed Endocet (10mg oxycodone+325mg acetaminophen), the Tarceva Rx was entered, spoke with a couple of social workers who invited me to the support groups and said they’d put the clinical research nurse in touch with me, caught a glimpse of Dr. Jang, who was highly recommended by the regional director of clinical trial programs up north… The downside so far has been the pharmacy experience.  Endocet isn’t covered by my NorCal plan, they were out of Tarceva… wasted 2 hours there.  Lots to learn, still a decent day.

Had lunch with Tara at the Mongolian BBQ down the street.  Popped an MS contin, cranked up the heater, took a long, delicious nap!  This lovely snooze was disappointingly interrupted by violent coughing.  I awoke with the sad realization I would miss the annual Chinese New Year dinner thrown by Judge Gee in Alameda 😦

Today’s pain has been moderate, comparatively.  I noted feeling alright after infusion.  Hopefully the Zometa will lessen the bone pain.  The painkillers combined with Tarceva are beating my tummy up a bit.  To summarize, pain still not figured out but getting closer; violent, intermittent cough has returned after a two-week hiatus; wheezing and crackling at night; shortness of breath still prevalent; headaches… not sure if caused by knots in trapezoid, sleeping position, or… brain mets?  I don’t know how I feel about getting more platinum.  It’s a whammy.  If stability is all I’m getting and not shrinkage, it’s not worth the loss of quality of life.

At midnight I was visited by a mysterious burst of energy.  Dexamethasone (Decadron)?  Probably.  Or maybe I haven’t used up my 9 lives.  I’m determined to find some form of exercise I can do here that will generate/activate “natural killer cells” – an immune response which I think may have to do with my long survival.  Those activities were easy/readily accessible up north, but I’ve not found substitutes since we moved to SoCal, except the pool.  So I’ll have to work on that for the physical aspect.  For the psychological, – gone is the pretty drive up the 24, the flowering dogwoods and California oak to soothe me on chemo days.  No ocean nearby, or much of anything, except an exposed steep hill of boulders.  There are a few parks around 10 miles away for daily jaunts.  It’s a drag to have to drive that far for beauty but it’s proving critical to my survival. And, I am buoyed by seeing my stuff.  It’s a small distraction from where I am.  My friend Julie says she always thinks she’s in the Bay Area the minute she steps into my kitchen.  I’m not sure why she feels that way, but I’m cheered by the thought.  If I could plant a hundred of the trees that would create that effect, it would be a miracle.  However they couldn’t survive here (and the nursery I could get them from is in its final days of business).

Am keeping my focus on that CO-1686 trial… and aspire to straighten all the medical BS once and for all.  If that happens, I may die another day.


The day after (chemo)

So far no nausea.  I feel a bit hungover.  I suspect it’s the horrible combination of dexamethasone (a pre-medication steroid one gets to inhibit reactions to the chemotherapy drugs) and painkillers (short and long-acting).  Dare I say I’m now on morphine?  Yep, can’t take ibuprofen while on chemo (chemo lowers blood counts, and ibuprofen acts like a blood thinner, messing with the already low platelets), and oxycodone  makes me horribly dizzy and nauseous.  Continuous-release morphine is fine, if wimpy, but the fast-acting variety makes me flushed and knocks me out.  Or maybe that’s the chemo drugs speaking?  I don’t know.  I want to be productive but just can’t seem to get the energy.  I should just give in and guard my post on the couch.

My sister is visiting for the long weekend.  I’m hoping she and my Mom will cook and freeze some meals for me.  We closed out her storage unit (she’s had since 2001) in exchange for getting her then-new 1998 washer to replace our beloved Bosch, which now only spins when it feels like it.  It would cost over $300 to fix, minimum, so we’d rather buy new, but now’s not the time.  So it’s back to a water guzzling top-loader.  The question is, do we keep her 1998 dryer that’s only had 2.5 years of use, or the 2005 dryer that’s had 7 years of use (by the previous owners of this home)?  Both Kenmores, roughly the same size.  The only feature difference is the 2005 model has Moisture-sensor auto dry, whereas the 1999 model is just a temperature-monitored auto dry.  The moisture sensor supposedly saves your clothes and energy, but is the matter of 5 more years of use an issue that trumps the moisture sensor feature?  Will I live long enough to care?  Probably  not, so I’d rather have the moisture sensor!  On the other hand, if the dryer dies in the next year or so, I may regret that statement.  We plan on donating whichever dryer we don’t plan to use… Such mundane issues, I know.


I discussed the jump from trial to chemo somewhat casually, so I’ll elaborate a bit more, if only to log it.  Chemo-brain is kicking in pretty quickly.  I awoke this morning and suddenly failed to recall all sorts of small details – silly things, but maddening nonetheless.

So the CT scan from Dec 10th showed mild progression in the target lymph node (+1mm crosswise, +3mm lengthwise) and in a couple of the GGO’s (ground glass opacities) that were being monitored.  Trial protocol allows 20% total progression, so I was considered “stable” and allowed to get an early cetuximab infusion in order to enjoy Xmas in New York.

My back and rib pain had been gradually escalating, but as always, I blamed it on our wretched bed situation.  We’d been vowing to rectify this since summer but have not, for some insane and unknown reason.  Hotel beds usually provide relief, but this time it didn’t, and since Hubs also complained, I popped a Motrin or Vicodin and moved on.

At my Jan. 9th appointment I brought up the pain issue and was prescribed Oxycodone (fast-acting).  We decided a PET scan was needed to sort out the bone pain issue, as bone mets don’t image very well on CT scans.  They don’t show metabolic activity or increase in size, and for detail, nothing matches an MRI (which might’ve been ordered if the PET didn’t give the answers needed).

I posted about the Jan. 23rd appointment, and then there was the scary Las Vegas Lights-PET scan review with my Kaiser oncologist (the POLST form incident) Jan 30th.  I interviewed with the Denver Post prior to the PET scan so I wasn’t positive I’d be off the trial at the next visit, and agreed to a photo shoot.

By the Feb. 6 visit to Denver, I knew that was the end of the line for the trial and felt I had confirmation of my imminent demise.  The photographer, a woman named Helen, showed up late to my appointment.  The reporter decided to attend an Atlantic magazine health fair and missed his last chance for an interview… and this photographer was not suited or prepared to pick up the slack.  She had poor detail retention and didn’t seem adept at picking up on nuances in interaction.  Which is strange, but who am I to judge?  Dr. Camidge and I posed a bit, then said Thank you, but you have to leave now.  It was admittedly abrupt, but we confirmed I wouldn’t receive treatment that day. I hope she got a long lunch.  Now the reporter wants to talk further and I’m not the sharpest knife in the drawer at the moment.

Anyway.  Dr. Camidge was much calmer about my PET scan.  He said most of my progression is in the bones, and while it causes extreme pain and adds the possible complication of spinal compression and disc herniation, his remark was, “No one’s ever died of a broken bone.”  Well, not technically… but usually from complications of bone issues.  “What we’re more concerned with are the soft, squishy parts – the organs.  You have a new metastasis on the adrenal gland, which presents a biopsy site for trials.  You don’t need the adrenal gland anyway, they can cut it out and you’d be just fine.”  I may be paraphrasing at this point, but that was the essence of his assessment.  He was concerned with the left lung, which showed activity and uptake, but since it can’t be imaged properly due to its collapsed condition, no one can even speculate about what’s going on in there.  It hurts like a mutha, I’ll say that.

He agreed that chemo should be started to stabilize and hold things in place while I wait for the CO-1686 to reach MTD.  That stands for Maximum Tolerated Dose, which is what they determine to be safe for humans with tolerable side effects, a dose strong enough to achieve results while not killing most people.  Phase 1 trials begin in dose-escalation, where groups of 3 people are enrolled at a minimum determined dose.  They are closely monitored for safety, efficacy, plasma concentration, side effects, etc.  If the endpoint (goal) isn’t achieved, another group of 3 is enrolled, same drill, and so on, until the emergence of DLT – Dose Limiting Toxicity.  MTD is generally the dose just below the one that causes DLT.  Once this is achieved and the data is collected, an expansion cohort is opened to enroll more participants who all start at this highest dose.  This is usually a new phase, and depending on efficacy and side effects, dosing can be reduced but never increased.  It’s important to enroll when MTD is reached because it’s a bit like receiving placebo when proper dosing hasn’t been discovered.  It’s also a safety issue.  If I was stronger and more stable, I’d consider enrolling in a dose escalation phase, but at this point in my condition, I need something which has some proven efficacy.  The trial is close to achieving MTD – I just hope it’s in the next 3 months!  And there’s a waiting list, even for the dose-escalation phase!  (I’m #9 but not reserved until I go in for a consultation with the doc.)

Dr. Camidge suggested the combination of carboplatin, gemcitabine (Gemzar), and erlotinib (Tarceva).  Tarceva is an oral biological agent that was supremely effective for me for a number of years.  Unfortunately I’ve developed acquired resistance to it due to developing a secondary mutation which blocks the action of the drug against the cancer cells.  The hope is that the cytotoxic agents (Carbo+Gemzar) will kill the cancer cells the old school way (wipe out everything fast-growing), Tarceva will continue to suppress what it can, and the combination will stabilize my disease long enough to wait out the “washout period”.  That’s a 30-day treatment break required by most trials to ensure the previous agents have cleared the body and any high grade side effects have largely resolved (usually rash, GI disturbances, infections, etc.).  In a person experiencing rapid and aggressive progression (disease growth) – me – that 30 day waiting period may not be  appropriate or even possible.  Hence, chemo.  I’ll also be receiving bisphophonate again, to keep from losing bone due to cancer lesions chewing holes into my spine, ribs, legs…

I had Carbo+Gemzar as part of my first-line treatment with Avastin (bevacizumab) in 2006. I had no side effects except for lowered blood counts, which necessitated the use of Procrit at the time.  Since then, I think it’s been discovered that the use of such blood boosters leads to lower overall survival.  This regimen calls for infusion on Day 1 of a cycle and Day 8, then a week off, for a 21-day cycle.  The new onc doesn’t favor starting Tarceva until after I’ve survived the first round of chemo.  She thinks the toxicity is alot to deal with.  I’m unsure what to think of this, as Dr. Camidge clearly stated to de-escalate to Gemzar + Tarceva if toxicity was a problem.  I’m willing to give Tarceva a 3-week break though, to resolve some of the skin issues.  After that, I’m all for ditching Carboplatin if it proves intolerable.

So far the main issues I’m having is with pain.  Two weeks ago it was under control.  I never thought I’d miss Ibuprofen so much.  The opioids just don’t compare when it comes to bone pain.  It’s one thing to be knocked out and pain free, but another to be knocked out and be in pain.  Not fun, chasing pain all day and night.  Not to mention the cork effect…

My appetite is somewhat holding, although my ability to consume is greatly reduced.  I can still taste, which is awesome, but I can’t eat as much as I’d like, and I’m losing weight.  Fruit flavors appeal the most to me.  I have no desire for sweets though.

We did an IKEA run for display bookcases the other day.  It’s been memory lane, unwrapping things and putting them up.  I can enjoy them for a bit, anyway.  Quite a few items belonged to my brother.  I think of all the wonderful things he’s lost over the years, in unpaid storage units, apartments hastily vacated, etc.  Oh well, it’s just stuff I guess.

I’m fading again.  The whole family is coming for surf and turf dinner in two hours.  My dad and I can’t do restaurants so it’s just as well.  I had my last hurrah salad the night before chemo.  Tons of bleu cheese 🙂  No final sushi dinner though.  Something to look forward to in March.

Have a terrific Presidents’ Day weekend!


Back in the saddle again


Happy Valentine’s Day from my chemo chair. Cycle 1 Day 1 of carboplatin-gemcitabine (Gemzar). It took three tries to get an IV in, but at least I’m getting new painkillers to replace ibuprofen, which is disallowed during chemo. Aside from being a pin cushion, it’s a helluva way to spend a beautiful day. I’m wearing my lucky toe socks, knitted by Naomi. I am honored that her folks are coming to visit next weekend, on their way to Hawaii.

Lots of company this month. Tiring but joyful. Denver is over, and with any luck at all, chemo will keep the cows in the barn long enough for me to get on the next trial.

I’ll post more later. The Decadron is making me feel weird…

Under threat of death

“It’s time to discuss end-of-life issues”, the oncologist said. The PET scan of 1/28/13 looked like Las Vegas. I’m supposed to get a port in and start chemo within two weeks. So of course, now I get a minute to try to “enjoy” my stuff, which the Hubs would prefer to throw away. Or as he puts it, “I’m willing to let you have what you need, as opposed to what I prefer.” Of course, it’s a bit late to enjoy my stuff now, but god forbid that hang on his conscience :-/