Health Update #29: Third Line Therapy with Pemetrexed

Needlepoint by Cornelia. Quote from The Sopranos

It's been two months since my last post. Everything is pretty much humming along as best as can be expected.  After I was sent packing by the University of Michigan in February, we returned to Chicago to meet with Dr. G. at Northwestern on March 8th for a consultation. Instead of Gemcitibine, which Dr. Q had recommended at UofM, Dr. G. recommended Pemetrexed, a class of medications called antifolate antineoplastic agents. It works by blocking the action of a certain substance in the body that may help cancer cells multiply. The side effects are supposed to be milder than the other chemotherapies I've been on (First Line treatment with Carboplatin and Paclotaxel; Second Line treatment with Docetaxel and Ramucirumab). I'm hoping for a somewhat improved quality of life with this regimen. To help with the side effects that I do expect, they've prescribed a steroid (dexamethasone), folic acid, and B12. 

There's a pretty stark contrast between the Lurie Cancer Center at Northwestern in Downtown Chicago and the Rogel Cancer Center at the University of Michigan. Northwestern, though a bit more expensive in terms of out of pocket costs, is much more patient focused and less clinical, with a host of resources. The waiting room is pleasant and calming. The staff all speak to you in gentle tones. The doctors and nurses are all attentive and compassionate. It's such a big difference, even if they do follow similar treatment standards.

We've run a few scans that have all come back fairly positive (no more brain mets, no further disease progression or additional metastases). So far, I've had two rounds of chemo with Pemetrexed, taken along with folic acid and steroids. As far as I can tell, there's no change in prognosis for good or ill. The side effects from chemo have been mostly tolerable, not significantly different from the previous round of treatment though significantly improved over last summer. 

I've figured out that with each 21 day cycle (2 cycles so far), I have 3 initial days where I have plenty of energy and exhilaration from the steroids. I'm up and about and ready to party. Those are the days to get things done--to go places, to eat out, to have a cool cocktail in a dark bar, to visit with friends. Then the general fatigue and shortness of breath kick in and I crash hard, crawling into bed and pretty much sleeping for the next 3 days. A hard sleep with crazy dreams. I'd say that on those days I'm out of bed maybe a couple hours a day, some days not at all. Flu symptoms come and go,  and the next few days after that are up and down. By day 10, I'm feeling better and for most of the second full week I'm largely feeling back to normal. Or maybe 60% of normal, with lots of naps and sedentary activities. By the third week, I'm feeling pretty good so long as I don't overdo it, though some days are better than others. Then it's back for the next scans and consultation and infusion if all looks good. 

My appetite is ok during those three weeks in general, and even during the first week to some degree. When I'm awake enough to eat, I largely focus on temperate, soft foods that are relatively bland. Yogurt with cereal and fruit and chia seeds. Cheese omelets, scrambled eggs, eggs over easy, hard-boiled eggs. Bananas, various berries, apples, Bosc pears, all with whipped cream and chopped walnuts as a nice touch. Maybe even chocolate chips. For lunch, warm soup (Ramen noodles come in handy) and soft bread sandwiches. I try to get lots of sparkling water with a splash of juice and occasional muscle milk. Smoothies are good. Popsicles. Jello and pudding. Ice cream. Sometimes I'm not up for dinner, or just a repeat of lunch. I'm down to nearly 190 lbs (starting at 240), so I'll take all the calories I can get. On the good days, I can eat pretty much anything and look to satiate those cravings for rich foods that I can't eat on the hard days.

I think I'm experiencing a bit more psychological and cognitive impact than before because of both the pain and the meds to treat the pain. In other words, I think the constant use of narcotics is starting to blur that line between real and imagined and I'm having a little more difficulty riding the "real" side of the day--to-day, partially from the frequency of nodding off and confusing dream-space with real-space. And then the pig ballerina drops into the swimming pool and then is gone. Maybe it was a penguin. It's not hallucinating, exactly. But I'm often catching glimpses of shadows out of the corner of my eye, or feeling someone walking up behind me when no one is there, or not noticing someone actually walking up behind me and then startling when they greet me. Like I said, not really hallucinations. More like nodding off without realizing it, or sometimes auditory or visual floaters on the periphery. 

It's difficult to focus for any length of time, though wacky sitcoms or action movies seem to hold my attention. I spend a lot of time binge watching Brooklyn 99. I'd always avoided it before because I thought it was just a silly Adam Sandler vehicle, but it's actually quite good -- more 30 Rock than Who's the Boss. Killing Eve is a recent favorite, though I can only take it in short bursts, two or three episodes at a time. There are a lot of good stand up specials that are out recently, and I've been through most of the Oscar-nominated shorts and films.  Saltburn was surprisingly well done, though they didn't have to beat us over the head with the plot twist montage. But the manor dance scene at the end to Murder on the Dance Floor was well worth slogging through the rest. Point of clarity -- I do not recommend Saltburn as a family friendly movie or for anyone who might be queasy about bodily fluids or sex or acts of self-pleasure (?) over a freshly dug grave. On a lighter note, I decided NOT to watch Midsommar (from 2022) after watching a few scenes and reading the plotline. I hope to see Killers of the Flower Moon soon, when I can block out a few days to watch it in segments.  I think I've already seen most of the other Oscar films that I'm interested in.

I guess this is just to say that I've spent a lot of time watching TV shows and films in between naps and meals and feeling a bit anxious about the glitches in how my brain is working, while trying to find a balance between pain relief and sharpness of mind. My back and ribs had started hurting more and more until we finally had MRI's done for both the brain and the torso. Though they came back clean for metastasis, I do have disc bulges from L2 to L4, and at L4-L5 I have a "diffuse disc bulge, bilateral facet arthropathy, and ligamentum flavum hypertrophy without spinal canal stenosis. There is mild bilateral neural foraminal stenosis." Also, "[t]here is a vertebral body hemangioma at L4." Doesn't sound good, but it doesn't seem that these are directly caused by the cancer other than being weakened by the illness. They are probably more related to the falls last summer when I fractured my coccyx and sacrum. The humerus area is still hurting a bit from the pathologic fracture and the humerus implant. Without pain meds, my back hurts terrifically. Even with the meds, I get breakthrough pain before time for my next dose. I'm not sure if the pathological fracture in my right rib was cleared by the radiation, or merely arrested, or something else. 

I was up to 8 mg of Dilaudid (hydromorphone) every 4 hours, but that came with the typical negative consequences with digestion and with the aforementioned brain fog. I did learn that it was helpful to get ahead of the pain, to take the pills as prescribed rather than waiting for the pain before taking the pills, but then those digestive discomforts reappeared, on top of feeling like I was sleeping way too much and having the craziest dreams. 

Those dreams are not difficult to analyze. In pretty much each one, my old house in Ypsilanti is falling apart and I'm trying to put it back together and hold it together while still inside it and family, friends, and neighbors are all mad at me. I also keep finding infestations of various vermin and insects (and occasional gutter punk squatters) in different corners and subfloors and attic spaces of the house. I'm sure it doesn't mean anything.

Or I dream I'm in my car or on the motorcycle and it's falling apart while I'm trying to get where I'm going and I'm holding it together with my bare hands. There's no way I'm going to make it because the handlebars or steering wheel or gear shift keep crumbling in my hands.

I regularly wake myself because in my dream I'm tripping or falling, which causes a startle effect in reality. Luckily, I haven't fallen out of bed yet. 

Maybe these recurrent dreams mean that I'm worried about upcoming home improvement bills or car repair bills. Or that it's possible that I might be able to get one more ride on the motorcycle before I sell it. I can't think of what else these dreams could possibly mean. Certainly not anxiety about disease, dis-ease, and death. And I have no idea why that pig (or penguin) keeps following me around. Anyway, as everyone knows, 1) other people's dreams are boring; and 2) they're going to tell you about them anyway.

Northwestern has set me up with a palliative care doctor (Dr. V) and she's making some alterations in my pain medications and referring me to a pain specialist. She also added low dose, long release Fentanyl patches to the Dilaudid. It's taken a bit of adjustments, but I think I'm finally on the right track. The pain specialist should help with some PT referrals and/or tips and other non-opioid methods of addressing the pain so that I'm not feeling so much like I'm losing my mind. 

Next infusion is Friday, April 26th. I see the pain specialist on May 7. 

Almost Springtime in Michigan