Ibrance/Letrozole -- Getting Neup'ed up!

What a great run! As grueling as flying to Denver and back weekly was for two months, being off chemotherapy was really nice. I managed to stay on the study for a second cycle by the skin of my teeth; my scans following the first cycle showed everything had shrunk or stayed the same except for two 6mm ditzels.

The second cycle meant flying to Denver only every six weeks for injections and infusion.  This was wonderful for my quality of life and, unfortunately, terrible for my poor liver. All the breast cancer that was beaten into sub-centimeter submission had blossomed and my liver was ensconced in a giant mass almost as large as the one initially found when I started this whole mess three years ago.  Like I said, no regrets. I enjoyed six months of hair, recovering blood counts, exercise, and normalcy!

I started Ibrance (palbociclib) -- a brand new drug as of February -- with Femara (letrozole).  The former (a kinase inhibitor) is taken for 21 days with, ideally, one week off, and the latter (an estrogen receptor inhibitor) is taken everyday.  While on that first cycle, I think it had quite a stranglehold on these tumors.  I was in a fair bit of pain that subsided once those 21 days were up.  I also lost some hair, but just an all-over thinning.  Now, the problem is that my bone marrow is completely beat up and not able to bounce back, so I have not restarted the second cycle of Ibrance.  My platelets are low (71), so I have a lot of little bruises, and my absolute neutrophil count plummeted to 0.7. This means I could get a cut or scratch and have trouble healing and become infected.

Fortunately, I had eight shots of Neupogen tucked away in the cheese drawer of my fridge. Neupogen is a growth-factor injection that jump-starts your bone marrow to kick out some white blood cells.  Unfortunately, it causes bone pain that feels like your rib cage and pelvic bones are attached to car battery and you're the one being jump-started.  It's the weirdest vibratory pain and it makes me instinctively hold my breath in hopes it will stop.

I remembered when I was on Taxol years ago and I had remarkable blood counts, I was taking Turkey Tail Mushroom.  I am tossing those back down again. I sure hope it isn't too late.

Speaking of too late, another young woman whom I'd "met" on Facebook has just died from metastatic breast cancer.  After growing up in Iowa and working in arts and academia here in Chicago, Nicole was diagnosed with Stage IV breast cancer.  She tossed that all away to move to New York and do stand-up about life with cancer (https://www.youtube.com/watch?v=jX6uQ4T-sdc) and it's just so good, especially to another formerly sexy young thing cut down by this terrible disease.

Prior to that, another woman who inspired me to keep exercising via her Stage IV Fitness Club message board on the breastcancer.org discussion groups has also died. She was an avid runner, living in Japan and France, looking for more young and active people like herself to see if it's possible to still be loving your body while hating what's going on inside of it.

The mystery to me is, at what point do you know you're about to die? They seem to be going along, doing okay, and then they disappear. That's the part that terrifies me.

ONT-10/Varlilumab Clinical Trial & Coming To Terms With Being A Fat Old Lady

I'm one month in on a clinical trial of cancer immunotherapy. Every week, I fly to Denver and have four subcutaneous injections (plus a blood draw, natch') and then every three weeks, I also have an infusion. You can read the details here (https://clinicaltrials.gov/ct2/show/NCT02270372). Immunotherapy has been in the spotlight of late, and some people have been on the maintenance regimen following this trial for a long time, so it's very exciting for me to be involved. It's not a traditional chemotherapy that kills all fast-growing cells. Rather, it is an agent that encourages my own immune system to attack the cancer. The only discernible side effect I have experienced (other than owies at the injection sites) has been fatigue, although I'm guessing the researchers would argue that I'm tired from traveling across the country and back every week. It could also be cancer fatigue. We won't know until I get scanned.

I used to place a lot of faith in my ability to sense what's happening in my body, but now, I'm less sure. Before the last scans, I felt a lot of pain in my liver and thought for certain the carboplatin and gemzar regimen I was so seldom able to actually receive was not working, when in fact, it had decimated the tumors to sub-centimeter size. At least I know I have that regimen in my back pocket if this trial doesn't do anything for me.

For now, I am enjoying a life off chemotherapy. What does that mean? When I cut myself, it clots. My bald spot seems to be filling in, and I am nowhere near as winded as I was when I hardly had two red blood cells to rub together. 

Now, I'm just a regular old fat lady and that's hard for me to find peace with. We went skiing in Utah three weeks ago and I twisted my knee, so I've gone to various  care providers for help. They all ask me terrible questions like, "Are you an exerciser?" The fuck? Maybe that doesn't seem like a terrible question to you, but when you have lived most of your life as a very fit, active person, realizing that someone has to use such a delicately phrased question when talking to you because they literally can't tell if you spend your days sitting on your ass eating donuts stings. A lot. Compound having to face this incredulity every time I enter a doctor's office with the reality that, now that have been neutered, I have to restrict my eating to a fraction of what I have always eaten, and you have a very dysphoric individual. I am sure anyone over 60 is laughing at my anguish, but I never got the opportunity to go gentle into that goodnight that is full-blown menopause; it was lights-out on my ovaries less than two years ago. I think I'm just feeling very sorry for myself at the moment, too, because with this messed-up knee, I have not been able to be an "exerciser" at all. I am also realizing that I must look really pathetic trying to get involved with any dance, and that hurts my soul, too. I don't want to be some irrelevant, gold-shoe wearing, thirsty-ass old lady everyone is rolling their eyes at. The problem is that I am unskilled at being a 40+ year-old woman. I don't know how to be normal or what that even looks like. My life has been thrown so far out of the orbit of normalcy, that I don't even know which end is up. I'm bored and spinning. I'm uninspired to right myself. I feel lost. 

Carbogem: So Good, It's Terrible!

I am nearing the end of my treatment with Carbogem.  To the blissfully uninitiated, that is an hour-long infusion of Carboplatin, a platinum-based agent that requires a fifteen-minute infusion of Emend and Zofran (the biggest guns in antiemetics) and an hour-long infusion of Gemzar, which sounds like some kind of medieval villain.

GEMZAR, O DARK LORD OF THE 

KINGDOM OF THROMBOCYTOPENIA!  I beseech thee!  

Permit me to put this steely blade 

to my most unholy and hirsute axilla or cast me out 

of the land of all that are cleanly-shaven!

What's this one been like?  I have to say that it's been really easy to take in some ways.  No hair loss.  The evening following treatment, I would feel a little poisoned and might have some queasiness and fatigue, but after that, it's been pretty doable.  Sometimes, I felt easily-winded due to low red blood cell counts, but aside from the bruises and petechiae all over my body, I'm rocking a Jean Seberg as Joan of Arc look.

The first three months on Carbogem went off without a hitch.  I was able to get my two weeks on/one week off and it kicked the crap out of my tumors.  I hadn't seen improved disease like that since maybe my first three cycles of Taxol in 2011.  Then, it started to work too well.  Treatments were withheld due to plummeting white blood cell counts, countered by three daily growth factor shots called Neupogen, which worked really well but, now that my bone marrow is completely wrung out, would give me violent bone pain about a fifteen minutes later.  The sensation is not unlike having your pelvic bones attached to a car battery and being given a few jarring jolts of electricity every few minutes for about 30 minutes.

Eventually, I found myself only getting treated about once a month with the lowest doses of chemo possible.  The white blood cells would be fine, but my platelet count would be absolutely miserable, and there's nothing that can help that.  I'd get turned away to try yet again next week.  Not having enough platelets means a long walk leaves your ankles and calves sprinkled with broken blood vessels.  It means not shaving unless you have time to nurse your nicked knees for a long time before walking out the door.  To my dancer friends, it means demonstrating the snap of a tightly connected passé results in a purple bloom inside your base leg.

During this time of recuperation, I feel that burning pressure in my back and under my rib cage mounting.  Feels like the hot muzzle of a pistol that is hard to ignore some days and I have a hard time keeping my anxiety in check.  Some nerve gets pinched and I discover an unrelenting twitch in my right eyelid and searing sciatic pain. Then, when my blood is strong enough for a full treatment again, I could feel the pain in my liver subside within days.

Scans set bright (or shall I say, dark) and early for Friday at 7AM.  Not sure what type of treatment is on the table next. My bone marrow is so beat up that it takes longer and longer to regenerate after each whack of chemicals, so chemo isn't ideal in that respect.  There's a brand new treatment called Ibrance that is taken with letrozole, but I haven't had the best of luck with hormonal therapies thus far. I'm a little dubious but willing to jump back into those supersonic hot flashes if I need to.  I told my oncologist that I want to pursue chemoembolization.  I am also looking into some clinical trials that would have me traveling elsewhere -- I can't believe they don't offer them in Chicago.  Seriously.  Thanks, Obama.

More to come hopefully sooner than later!