28 January 2022

the next decision

i'm still trying to write poems these days, even if not as often, but they end up being tiny paragraphs with names like "when to resign." i don't mean "resign" like "give up entirely" but more in the sense of acceptance. where's that line for a person with advanced cancer, the one between believing with all your heart that a major change for the good can still come about, and accepting that, given what's going on in your body, a major change like that is not likely realistic. 

how do you balance hope with reality? i've been asking that since the beginning of this mess, and maybe the answer evolves as time goes on. or maybe there's always been only one answer: the best you can. 

there are all sorts of clinical trials and research happening all the time, and it's not completely weird to hope for something life-changing. i used to think, i just have to stay alive until the next advancement in my disease. this is true, but actual advancements take time. and you don't know how what shape your physical body will be in by the time the next thing arrives. 

all that being said ---- i spoke with my oncologist yesterday about next steps. as i suspected, the recommendation (i.e. best bet) is for me to receive a weekly, standard-of-treatment chemo drug (taxol). i had taxol back in 2019 when i was first diagnosed, in combo with a platinum drug (carboplatin), that combo being the big guns/gold standard for ovarian cancer patients going on decades now. 

getting taxol weekly (3 weeks on, 1 week off) behaves differently in the body than getting it in big doses like before. i will lose my hair more slowly, among other things (!), but by and large, i have heard it is not too hard to tolerate. and i've had it before, so it's not absolutely terrifying (just mildly so haha). 

BUT WILL IT WORK? well, who can say? there's a good chance that yes it will. i'm refusing to entertain any other possibility today. 

in terms of other options, there is a (you guessed it) clinical trial that combines said weekly taxol with a drug called AVB-500,  a "GAS6/AXL inhibitor." its methodology is still not entirely clear to me, but i think basically it targets specific molecules involved in the growth of cancer cells ( sometimes called molecular targeted therapy, or small molecule cancer therapy). 

this is a "phase 3" trial (the last one i was one was classified as "phase 1") which means the drug has been through more testing, and the results are positive enough that it's fairly close to receiving FDA-approval as drug that all OC patients will receive benefit from. in phase 1 trials, the drugs are newer, and still being tested in terms of safety in humans.  

it's also a blind trial, which means i might get taxol plus AVB-500, or i might get taxol plus a placebo. either way i get the weekly drug my doc wants me to take, so there's no humungous loss if i end up getting the placebo in combination. 

so why not just do the trial then, right? well, here's the thing. getting sorted for a trial can take a few weeks or more, given all the paperwork and pre-trial test requirements (scans, biopsies sometimes, mri, etc. whatever the trial requires). which normally for me is no big deal. BUT.  since the last drug stopped working (around Thanksgiving of last year), my cancer has been growing, and i'm starting to feel some symptoms. 

nothing huge, but because of the cancer's location near my bowel (sorry if that's cringey to mention but it's just the truth and my cringe-meter has evolved a lot in 3 years!), i'm having some pain in that area, some cramps and related unpleasantness. it really just started to be noticeable last week and it's not debilitating, i'm not even taking tylenol for it at this point, but i don't know how it will progress in a month's time.

if i choose not to do the trial, and return for treatment to my Boston hospital's cozy suburban branch, i can will be able to start the getting the drug next week. so now i'm weighing the part of me that wants to get treatment like NOW against the part of me that still hopes for the possibility of something more and possibly life-changing, that is very pro-clinical-trial, go science! etc. 

trials by and large are more rigid in structure, meaning there's little room for say, adjusting the dosage of something, or adding another drug later down the line, etc. there are more hospital visits and check-ins, blood draws and other testing. oh and the possibility of potential new side effects because it's just something new in my body. 

so i'm sitting here today trying to predict the unpredictable with my body, wondering if it can wait a few more weeks or a month or whatever, or if it should just get the treatment started next week and get on with it... no big deal, just one of those hugely serious life-altering decisions cancer patients are faced with all the time! i joke, haha, but i'm always aware of how fortunate i am to still have decisions to make. 

1 comment:

  1. Wow, Andi, I feel the weight of all this so acutely. For some reason, I never got the usual email I get alerting me that you have put up a new post. Hmmmm.... that's why I'm only seeing this now. Cut yourself ALL THE SLACK, please. Because this situation you're in IS RIDICULOUSLY DIFFICULT. You're amazing. I love you so much.

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