Experimentation Update, June 2020

General, Medical Updates 2 Minutes

As some of you are aware, I embarked upon an oncologist directed experiment of one (1) person (me) about three (3) months ago when we added Kisquali (a/k/a ribociclib, a CDK4/6 inhibitor) to targeted therapy, Piqray (a/k/a Alpelisib), along with Faslodex (a/k/a Fulvestrant) and a rather lengthy list of medications to address side effects and supplements, etc. If that sounds like a lot, it is. I’m still on the highest dose of both targeted therapies, which has been a lot on my body. However, we had to do something different since the PET three (3) months ago showed that all of my mets (and I have many many bone mets) were becoming significantly more metabolically active, a harbinger of progression to come. My doctor didn’t want to let go of Piqray as my second line of treatment because I have its target, the PIK3CA mutation.

Well, my first PET since starting this regimen was the 8th of June and the results are pretty freaking amazing. The report includes phrases like …

  • interval resolution
  • multiple lesions … most of which do not demonstrate … abnormal uptake
  • significant interval improvement
  • mild residual metabolically active metastatic disease
  • no evidence of new metastatic osseous lesions
  • no evidence of soft tissue metastatic disease

Frankly, three years into this experience with Stage IV metastatic breast cancer, this is the best scan I’ve ever had. Many of my last tests included phrases like “innumerable lesions” and “high risk for fracture” and “pathological fractures” and “compression fractures” and “increased metabolic activity” and “new metastatic lesions.” I watched for stability, at the measure of metabolic activity, the SUV values, to inch lower. Every report, I pored over, finding some measure of comfort in the phrasing and parsing out the meaning of each word.

This is NOT a good idea as different radiologists with different styles used different language and it drove me nuts trying to figure out if I should read between the lines. Please don’t do that to yourself, I would make myself a little crazy each time. My doc kept telling me to keep my wordsmithing out of the medical reports, that I wasn’t reading a legal brief.

Many doctors use the phrases No Evidence of Disease (NED) or, mostly for those of us with lots of bone mets that show some activity while dying and healing, No Evidence of Active Disease (NEAD). When I asked my doctor if I qualify for either of these labels, she told me not yet … and then added, but you are the closest you’ve ever been. That’s the first time she’s told me that. I could hear the broad grin in her voice, another first.

It has taken a lot to get here, a lot of blood, sweat and tears, not all of them mine. I haven’t been alone in getting to this point, it has taken a gigantic team of medical professionals, friends and family. This victory is theirs as much as mine and I know that I don’t always remember to acknowledge that. I would not be here outside of my village and you, my readers, are part of that village in your own unique way.

And yet.

We celebrate today, knowing that in a month, we could be back to progression and new lesions. Friends got good news this week and friends got very bad news this week. The rollercoaster of this experience is constantly teaching me that today is what we have, today is what we need to focus on and today is what matters.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

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57 thoughts on “Experimentation Update, June 2020”

      1. I just gave the link to your blog to a friend whose wife is about to start treatment for a recurrence. He was happy to know you exist, so I’m sure she’ll be in touch—even though I didn’t cite ALL the superlatives!😉

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  9. Hi Abigail,

    Yay for the best scan you’ve had and another yay for that broad grin you heard in your oncologist’s voice! Btw, I love how you put that – hearing a grin. 🙂

    So glad you had good news. Still, I know the treatment has been brutal.

    Hoping for continuing good news and continuing good scans. xx

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    1. Thank you!!! You really can hear a smile in a person’s voice. That was always part of my training program for my staff as a simple way to make sure that you sound focused and happy to hear from someone. Appreciate your ongoing and consistent support. ❤️

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  11. Suffering is either a memory (past) or imagination (future) There is none in the present. You’re right, we should bask ourselves fully in this moment. Sending you love, light and magic ❤️🤗

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      1. Happy to, Abigail i know this sounds crazy, it is crazy but “DISEASE IS A MEMORY” am not saying the pain you feel right now is not real, it is, and I am sorry but before i say alot of things to throw you off, why don’t you check out my post – body of bliss – a cure for chronics it will help with some deep insight

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  12. Thank you for visiting my blog. I want you to know that I have emense empathy for you in the stage you are in. I am so glad to hear that you have medication and science that is bringing you hope 🤗🙏🙏🙏 I will remember you in my prayers. May you find strength and hope for each.

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  15. I’m sure you know I am laughing with you when I giggle that your doctor told you you are not reading a legal brief. 😂 This post truly makes me so happy. Congratulations, and I hope this amazing news lasts as long as possible! 🙏🏽♥️😊

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    1. Thank you!! She does get exasperated with me at times and tells me to turn off my attorney brain. It’s gentle teasing and I know it’s because she knows me. Thank you for being a part of my support system and always commenting!! ❤️

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  17. Pingback: Weekly Round-Up | Journeying Beyond Breast Cancer

    1. Thank you so much!! I was just telling my husband the other day that I truly didn’t except to find such widespread support from my blog. There are those who I know in real life who comment, but there are also people I never would have met but for being on this platform and that’s rather amazing. Thank you for being part of my life. ❤️

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  20. Thank you for sharing your good news, Abigail, and the encouragement it offers others. I’m currently on a clinical trial through UCLA with ribociclib for stage III patients. I am unfortunately on the control arm, but your news is a comfort for those of us in Stage III. Enjoy each day’s blessings!

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    1. I’m so glad!! Thank you so much for participating in a trial. Even if you are on the control arm, you are contributing to research that will help all of us and that’s priceless. 🙂

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