Sunday, August 30, 2026

How does it feel

 I found this emotions wheel from BEAM, and loved the messiness of it. It's not just this perfect circle with perfect colors. It's alive.



 I've decided I feel in colors. My Dad always taught us to have the right word for what we were saying. We call him the walking thesaurus. Moments like this should have one right word, but they don't. So right now I am: a rainbow. I can literally pick out words from each color in that perfectly, imperfect emotions wheel.



 The most common question I've received with these new findings is, "Is this a good thing or a bad thing?" 

 My most succinct answer is: It's both. It's why I did this (SURMOUNT) clinical trial. I'm catching potential future cancer cells before they have a chance to attach to an organ and become metastatic if the study (ABBY) medication(s) work as intended. It's bad that I have them though as it greatly increases my risk of metastatic cancer if we can't kill them with these study (ABBY) medication(s). Makes my approach proactive and not just reactive. The current practice without clinical trials is waiting to treat it until it has metastasized.



 The words I've used to some is "scientifically inevitable". Let us remember I have triple positive breast cancer which is HER2+ and HR+ and I had a residual cancer burden (or not a pathologic completed response) after chemotherapy prior to surgery (neoadjuvant). 

Let us consider:

First 5 Years: HER2-positive (HER2+) recurrences most commonly appear within the first five years, often peaking around 20 months to 3 years after diagnosis.

Beyond 5 Years: Because of the hormone receptor-positive (HR+) component, patients carry a steady, persistent long-term risk of late recurrence that can extend past 5 to 10 years post-surgery.

Other Risk Factors:

  • Tumor Burden: Larger primary tumor size and residual cancer burden remaining after initial treatment increase risk.
  • Pathologic Response: Not achieving a pathologic complete response (pCR) after neoadjuvant (pre-surgery) treatment elevates recurrence potential.

Other Considerations:

Site of recurrence: If it returns as metastatic (distant) disease, HER2-positive (HER2+) cancer has a higher tendency to recur in the brain compared to some other subtypes.

 Let us remember, this is why I chose to enter these clinical trials, so others may live.


 So back to how does it feel? It feels like I'm ready to hit this shit with all I've got. The fact that both UPenn clinical trial teams (SURMOUNT and ABBY) contacted me so quickly after the results to get started really shows me we're on top of this. The continued support I continue to have from everyone is so very appreciated. 
The feeling I have is like a rugby scrum and we're the All Blacks (cancer is yellow):



 







Friday, August 28, 2026

Meet ABBY

 




Pause... and Go! Time for the ABBY Trial

 I realized I never posted about the end of our trip to Philadelphia. We were able to take some time to explore our nations history at Valley Forge and exploring the Independence National Park area. We made it home in one piece.

 This void was due to a time of waiting, a time of pause. But when I got my call from my SURMOUNT clinical trial investigator on August 26th with the results of my bone marrow aspirate, we were quickly launched back in to go mode.


 This bone marrow aspirate showed 1 disseminated tumor cell in 10 slides and was confirmed by a second pathologist to prevent false positive. As posted in the past, bone marrow aspirates for this purpose began with a 40% chance of false negative, so finding a confirmed positive disseminated tumor cell on the 2nd bone marrow aspirate was, in a way, lucky.

 A couple links to a refresher on the trials and what these words mean: https://saolgairegra.blogspot.com/2025/10/entering-world-of-clinical-trials.html

https://saolgairegra.blogspot.com/2026/02/surmount-clinical-trail-results-from.html

 Enter ABBY Trial:

 I received a call within 1 hour of my results from the SURMOUNT Trial to enroll in the ABBY Trial. They requested that I return to Philadelphia as of September 8th to start the consent and lab draws and remain there until September 10th to obtain a baseline bone marrow aspirate and complete randomization to see which arm of the trial I will have for treatment.


 Arm A is treatment with Verzenio alone
 Arm B is treatment with Verzenio plus Hydroxychloroquine

 I will find out which Arm I am enrolled in as of September 10, 2026. 

 I will be much more active on my blog again as I continue to navigate my treatment to prevent cancer from coming back!