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):

 

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!

It’s Alright

  I heard this song driving into Philly and found it apropos:

 At the Perelman Center, ready for my labs and bone marrow aspirate!

Radar Love

  

 Another early morning to drive the 472 miles from Ohio back to the Philly area. Taking the PA turnpike which is apparently ~$100 from west to east now?! 

 We plan to take a little time for ourselves and explore the Valley Forge Historical Park before heading back to the hotel, crashing, and getting up early to get into Philly for my Bone Marrow Aspirate tomorrow morning. We’re hoping to pack in Independence Hall to see the Liberty Bell and the Constitution after my BMA and before our flight but we’ll see. 

 

Ohio or Bust and Imaging Results!

  We had a great visit with my parents and puppy, Oley. We had some fantastic thunderstorms and watched an even more fantastic FIFA World Cup 3rd place match. A great visit, all in all. 

 We’re now headed the 207 miles to visit Steve’s family. A few days there before heading back East to my Bone Marrow Aspirate procedure for my SURMOUNT clinical trial. 

 I mentioned MyChart in my last post and it still did not disappoint. I received timely results for all of my labs, CT Scans, and Nuclear Bone Scan (correction from PET Scan). I thought it was a PET Scan, but it was clarified it was strictly a Nuclear Bone Scan that uses 1/3 the nuclear isotope and is more specific to finding bone metastases. 

 Findings: NO METASTATIC DISEASE FOUND!!!!

 This gives me the green light to proceed with the SURMOUNT Clinical Trial and if all goes well, I will never have to do the ABBY Clinical Trial. I will have a Bone Marrow Aspirate every 6 months for 3.5 years as long as no disseminated tumor cells are found in my bone marrow. That’s best case scenario!

 Grateful for a sunny day with less wildfire smoke!

Labs, CT, and PET Scans at UPenn

 Today is a marathon day. After a great sleep at a hotel outside of the city, we’re headed into Philadelphia University City to the University of Pennsylvania Perelman Center for Advanced Medicine for all of my tests. 

 Before leaving, I couldn’t help but giggle at the continued, and unexpected, continuation of my shark theme. This was the shower set at our hotel:

 Now for the traffic report. We planned an early morning to get on the road and avoid as much traffic as possible. To put this in perspective, there are 738,700 people in ALL of Alaska. That’s just 1.3 person per square mile, just the way we like it. Now we’re on the road with the population of Philadelphia, 1.57 million, expand that to the surrounding areas, where we stayed, it expands to 6.33 million. Now add in the FIFA World Cup international visitors for the final game in just 2 days and we’re swimming in people. So far, my driver (my husband), has been doing a phenomenal job ducking and weaving through the lanes. I finally caved and got Waze (thanks Mom) which has been a tremendous help in finding the best route and knowing any upcoming hazards. 

 Today’s itinerary with a big shout out to MyChart by Epic, which makes it so easy to plan a day of appointments, even from 4,290 miles away:

0900 - Labs for ongoing clinical trial research

1000 - CT Scan of Chest, Abdomen, and Pelvis

1030 - Nuclear medication injection for PET Scan - see my past post for all the nuclear PET scan fun

1330 - PET Scan

~1430 - Drive 272 miles to Brookville to see my parents

 See you on the flip side!

On the road again - Clinical Trial Trip #2

 As we were driving into Anchorage to catch our flight, we had the most beautiful rainbow appear. I will take that as a good omen. 

 We fly from Anchorage to Seattle to Philadelphia and arrive at 4:45 pm EST tomorrow. I will have a CT scan of my chest, abdomen, and pelvis and a PET scan to ensure I do not have any metastatic disease. 

If I do, I won’t be able to continue with the SURMOUNT study at this time. Of course, much more to come if that happens. 

If I do not, I will get my next bone marrow aspirate (BMA) on July 23rd at 9:45 am and then head back to Alaska at 4:30 pm the same day. 

The week between my imaging and BMA will allow us to visit my parents and my husband’s mother and then head back east in time for my BMA appointment. 

Here’s to safe travels and clear imaging! Final destination: Pennsylvania!

Correction: one year NED

 Just as I started this blog, I’m a realist but an optimist. I mistakenly stated that I was two years of no evidence of disease on my last post, when in fact, I’m only one. The clock for no evidence of disease begins on the date of your first clear scan after completing all necessary treatments. The other thing getting in my way is that I’m just not that great at math. Sorry for the confusion. One year down, nine to go.

Year 2 of No Evidence of Disease (NED)

  It is time to celebrate! Year 2 out of 10 without any evidence of any cancer coming back! 

  A quick review of BI-RADS is helpful before reading on. Due to my breast density, both a screening mammogram and breast MRI were warranted at my 2 year imaging. 

 My mammogram was found to be a BI-RADS category 2 which is benign with essentially 0% likelihood of cancer.

 My breast MRI was found to be a BI-RADS category 3 which is probably benign finding with short interval follow-up suggested with >0% but <2% likelihood of cancer. Repeat MRI suggested in 6 months. They're monitoring an area in the posterior aspect of the upper left breast (same side and close to the location as my original cancer) but does note it could be fat necrosis. When I told my sister about this, she said "I never thought of fat as being alive" which was a valid statement. Fat necrosis is a harmless, noncancerous condition where fatty tissue is damaged, dies, and forms a firm lump or oily cyst. Due to the size of the lumpectomy, my surgeon, who called me less than 24 hours from when my results were available, stated she's suspecting it is more of a fat necrosis situation and will monitor at the 6 month mark.

 In addition to my screening imaging, I also had a full spine MRI due to the areas found on my PET scan (revisit this information here). Long story short, all areas are stable and continue to appear as hemangiomas which are not an issue unless symptomatic, which they are not. I do have degenerative changes and one disc bulge in my neck, my midback, and my lower back. Hello 40s. 

 I think this is all the imaging I will have for now. In July, I continue on with my SURMOUNT trial and will have CTs of my chest, abdomen, and pelvis and a PET scan. If clear, I will have my 2nd bone marrow aspirate late July.

 

 With year 2 behind me, I'm focusing on transitioning back to future thinking, rather than just taking things one day at a time. It's harder than you may think.