Buying time

A whole lot of nothing seemed to be happening on the treatment front for a couple weeks after the most recent mets re-diagnosis (much to my frustration/chagrin/wanna flip a table over and scream at the medical community kind of disappointment…), but as of the last few days we are back in business and cashing appointment checks left and right.  Long story short (those of you with itty bitty attention spans can stop after this sentence), I have a busy week coming up and chemo likely to begin locally Thursday or Friday of this week (read on if you care enough to find out what kind of treatment and other details related to extending my life…I’m not judging, I swear, you got the Cliff’s Notes version and that might be all you want).

Had a dickens of a time getting in with a specialist at MD Anderson Cancer Center (MDACC) in Houston, mostly on the admin side of things because their system of onboarding is straight up ridonculous.  I ended up getting an appointment with the Doogie Howser of breast cancer oncologists (which, you know, is fine for your average run of the mill kind of primary boob tumor, but not my metaplastic liver mets, no siree!).   I had heard about a treatment plan for metaplastic breast cancer (MpBC) called DAE (liposomal doxorubicin (Doxil), Avastin (bevacizumab), and everolimus (Afinitor)…yes it gets so unfuckingnecessarily confusing when they use trade names and generic names inconsistently and interchangeably!) and MDACC was the home base for the studies, so I wanted to get a consultation with one of their specialists to learn more and get additional ammo in order to get approval to go off-label for the treatment using these drugs (all FDA approved, but not necesarilly for breast cancer…).  Doogie wasn’t going to do that for me, but at the time it’s all I had 😦

Then we met with my oncologist and research staff last week to discuss the androgen receptor (AR) clinical trial.  To revisit, I have triple negative breast cancer (TNBC), meaning that my tumor cells do not have receptors for estrogen, progesterone, or herceptin.  This is significant in that there are several medicinal therapies out there that block these receptors and can therefore ‘starve’ the tumor(s).  Those drugs are not available to me because I don’t have the receptors 😦  Well, androgen receptors feed off testosterone instead of the more feminine hormones listed above, and I’m 60% positive (meaning 60 out of 100 cells tests positive…apparently off the charts compared to anything they’ve seen…most ladies that test positive are closer to like 10%….so, my uniqueness continues but potentially in a good way this time!).   I’ll be undergoing an oral chemo regimen that is typically given to prostate cancer patients (I don’t suppose it surprises anyone that I’m driven by testosterone…?!?), plus a potential ‘helper’ drug (that’s the clinical trial part…if you want more info, find it here: https://clinicaltrials.gov/ct2/show/NCT03090165?term=TNBC+AR&rank=5).  AR therapy is apparently all the rage in the world of TNBC right now, and my high percentage of receptor-positive cells bodes will in terms of potential response to treatment.  So, we’re going to try it for one treatment cycle (28 days) and re-evaluate at that time.  I cancelled my appointment with Doogie and now have one with one of the legit MpBC specialists a few days after my last AR treatment, when we’ll hopefully have had a scan to let us know it’s working to slow tumor progression and I won’t even need the appointment (fingers crossed, folks, fingers crossed…all of them…DO IT NOW!).

This chemo is different in that it’s oral, but there are still side effects and they will be constant (cumulative, actually) instead of the ups and downs of the IV drugs.  Who knows how I’ll feel, this kind of treatment is all relatively new in women, but I have to imagine it won’t be all sunshine and rainbows (but maybe…unicorns, too!).  I’m also officially vegan these days in order to reduce methionine and casein (cancer feeders found in meat and dairy).  I tell you not in order to lord over you with my supreme veganness, but for those folks aiming to prepare meals into the future.  I could use veggies and fruits, in as many colors as possible (here’s where the rainbows come in!), cut and ready for me to eat.  Raw preferred, plain or in salads, but cooked into other kinds of deliciousness would be greatly appreciated.  Kevin and Maggie are still omnivores and will gratefully accept all sacrificial animal dishes you care to serve 🙂  Moving is also happening, but we don’t have a schedule yet (I know, I KNOW, you want to help…it will happen!).

It’s a lot of info, and I know I’ve bombarded you with lots of acronyms because I’m lazy and don’t want to type out all those long words, but thanks for reading this far.  I love you all and am as always so humbled by your support.  Ya’ll are my rock.  I thank you for reading, for sending positive thoughts and cards and gifts, for hanging out and making me laugh (or allowing me to make YOU laugh…I love to do that!!!).  Thank you, thank you, thank you!

-JEB

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7 Responses to Buying time

  1. Joan Mitchen says:

    Jen, I usually cannot respond to your posts as I feel whatever I say is so inadequate and sappy. This time I must tell you again that your struggle and verbal comments inspire me every day to stop complaining about my insignificant battles and small irritations…I respect your strength although I know it cannot be easy or anything you want to do but by God you are doing it….inch by inch, word by word…you are giving us all an insight into how to fight and fight hard against all odds. Again you are my inspiration and have made me a better person….I only wish i could help YOU! Not sure how you feel about religion and all that stuff but I am sending prayers and supplications for you each and every day. Jacque is right here with me doing the very same thing…he is not as teary as me but I know his heart is broken as he loves and respects you so very much. We send hugs and love to you and Kevin and Maggie. Keep going kid……you are one helluva Super Hero!

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  2. Chery Theis says:

    So glad to hear you have a plan and it sounds like it’s positive & hopeful!!! YEAH!!! Let us know what you need, when you need it and how you want it! (Mind out of the gutter folks!) LOVE YOU!!!

    Like

  3. Victoria says:

    You amaze me everyday. Always on my mind and always on the sidelines rooting for you!! 💙❤️

    Like

  4. Nick Milhaupt says:

    Love and unicorns and friendship and hope to you. If I see Doogie in a back alley we’ll talk some medicine.

    Be well and keep being your awesomeness.

    Like

  5. Jane Lambert says:

    Wonder Woman has nothing on you, Jenn!

    We are crossing all fingers and sending all love.

    Like

  6. Sarah brodnick says:

    Sounds great that you have as plan!

    Like

  7. Joan Schneider says:

    You are awesome my friend. I read each of your posts from start to finish, and often go back to them at a later time to reread them (usually too many tears the first time around) and try and understand what you are going through. I have nothing to complain about, and am so great full to be in good health. I know that can change any day, anytime. My vegetable garden is just getting started, so maybe I can bring you some of my fresh produce a little later in the summer. Stay strong, sending prayers, love and hoping for treatment success!

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