Day 4 - SURMOUNT Clinical Trial - Heading Home

  Today is a much better day! While still tender, I don't have any of the pain I had prior. I was able to take ibuprofen along with Tylenol yesterday, and made sure to ice when we got home. All is moving in the right direction.

 I am expected to get my results on Friday, February 27th. It will be a nice birthday gift, either way. It will help to give direction to ongoing treatment options for me, and again, will help future people diagnosed with breast cancer either have an option to know their recurrence rate and treatment or will allow researchers to know to go another direction with their research.

Per Google AI:

"Participating in a clinical trial can contribute to a sense of purpose and happiness by providing a meaningful way to give back to others and society as a whole. Key aspects of this positive feeling include: 

Contributing to Medical Science: Your participation helps researchers advance medical knowledge, potentially leading to new treatments, cures, and preventative measures for diseases that affect millions of people.

Helping Future Generations: The information gleaned from clinical trials may directly benefit future patients and generations who face similar health challenges.

Altruism and Purpose: Engaging in a selfless act can enhance a participant's sense of self-worth, provide a strong sense of purpose, and increase overall well-being.

Community and Connection: Trials often involve interaction with medical professionals and sometimes other participants, fostering a sense of community and shared purpose in combating illness.

Personal Satisfaction: The knowledge that one's involvement is making a tangible difference in the world often leads to increased personal satisfaction and happiness. 

Overall, the altruistic nature of clinical trial participation can be a powerful source of happiness and fulfillment."

 I fly out from PHL at 7 pm tonight and am hoping to catch an earlier flight in SEA to get home sooner. Otherwise, I'll have a 12 hour layover in SEA until my scheduled flight tomorrow morning! 

Day 3 - SURMOUNT Clinical Trial - Bone Pain and Dinosaurs

   There was more pain after the procedure than I had anticipated. Not pain that wasn't manageable, but pain nonetheless. I'm surprised I hadn't looked into this before but the AI summary of why bone pain exists with bone marrow aspirates sure was an eye opener:

 “Bone marrow aspiration causes pain primarily because the procedure must pass through the periosteum, a thin, fibrous membrane covering the outer surface of the bone that is packed with nerve endings. While the hard bone itself has few nerves, the periosteum, surrounding tissues, and the marrow cavity itself contain sensory fibers that react to the pressure, drilling, and suction involved in the procedure. 

Here is why it hurts:

The Periosteum (Most Painful Part): The outer covering of the bone (periosteum) is rich in sensory nerve endings. Piercing this layer with the needle causes sharp, acute pain.

Intramedullary Pressure: Bone marrow is enclosed in a rigid, non-compliant casing. Inserting a needle and removing fluid (aspiration) changes the pressure inside the bone, which stimulates nerve endings within the marrow cavity.

The Suction Feeling: The aspiration (sucking out) of liquid bone marrow creates a temporary, deep, pulling, or aching sensation.

Nerve Sensitivity in Marrow: Although the bone is hard, the bone marrow receives sensory and sympathetic innervation, meaning nerves do exist within the marrow cavity, particularly around blood vessels. 

Why Local Anesthetic Doesn't Stop All Pain:

While doctors use local anesthetics (like lidocaine) to numb the skin and the outer surface of the bone, it is difficult to completely numb the deeper bone marrow cavity, leading to the intense, brief pain reported when the syringe is actually used.”

 So this is absolutely fascinating to me. I don't want to say this with 100% certainty, but I am pretty sure this was not part of my physical therapy education and I find that absolutely mind boggling. 

 This new(ish?) knowledge to me will absolutely help me in caring for my patients who have sustained traumatic or elective bone related injuries/interventions. 

 We got to explore around the area and went to Edelman Fossil Park & Museum in New Jersey and the Mutter Museum in Philly. No photos allowed at Mutter but here are a few from Edelman Fossil Park:

 Turns out New Jersey was under water during the time of the meteorite impact and a said tsunami washed land dinosaurs from Pennsylvania out to sea where the perfect conditions were present for fossils. This has allowed them to find both marine and land dinosaurs in their archaeological site on the grounds.

 Checking out from our rental tomorrow and headed to Reading Terminal Market before returning to the airport for my long trip home.

Day 2 - SURMOUNT Clinical Trial - Procedure Day

This is how I feel right now in the waiting room!

I’m waiting for labs before my procedure. Quite the well oiled machine so far. Risks are always high in an oncology center so masks mandatory!

Labs didn't happen before my procedure so I'll have to get them after. Time for my bone marrow aspirate!

So, that was interesting. I'm not sure what I expected a bone marrow aspirate to feel like but wow! Pressure and weird pain-like feelings throughout the procedure. 

I was positioned on my belly (supine) so she could access the back of my hip bone. She used a bony landmark on my hip bone known as the posterior superior iliac spine (PSIS) to find a flat spot so the needle would be less likely to slip. 

This is a view from back to front - PSIS is the 2nd down on the left

She lidocained me up so I wouldn't feel the insertion of the needle, cut a small slit in my skin, and then went to town boring into my hip bone.

The boring needle slipped off the bone and went into my body further than intended, but she was able to reposition and get it into my bone as planned.

 She then took bone marrow out via a syringe which I could feel as pressure/pain moving from inside out. She then took out the boring needle and covered it with gauze and a tegaderm (clear tape). 

 The whole procedure took no more than 20 minutes. 

 I'm back at our VRBO and had some great Vietnamese food from Pho and Cafe Saigon. Highly recommend if you get to University City.

 Time to rest and visit with my Mom! Thanks for everyone who has cheered me on with this new adventure!

Day 1 - SURMOUNT Clinical Trial

  I have arrived in Philadelphia! The city of brotherly love, and hopefully sister cancer kicking badassery! I have my lab draw and bone marrow aspirate tomorrow at 10:30 am EST. I won’t know the results for about 1.5 months so back to working on my patience. I appreciate everyone’s support in this endeavor as I help advance the future of cancer research and potentially help myself take the bull by the horns if I have any sleeper cells lying in wait. 

 For now, it’s time for some food and sleep as I have been up since 6 am on 1/27/26 with only little bouts of sleep and I have to be at my best tomorrow morning!

Neoadjuvant Chemotherapy aka Preoperative Systemic Therapy

 I swear I did a post on this way early on, but I cannot find it in my list of posts, so here goes. It is often unknown that there are treatment options BEFORE surgery to remove the tumor. Initially, most of us just want the thing out of our body, so we likely just go along with getting surgery first. But there are benefits to preoperative systemic therapy for certain types of cancers. 

 I will only be addressing HER2+/HR+ cancer and more specifically one with a pT2 (pathologic tumor grade 2).

 The National Comprehensive Cancer Network states:

  In my specific case, had I not chosen to do preoperative systemic therapy, my prognosis would have been poorer and my overall recurrence rate higher. This is because, with neoadjuvant TCHP, I still had 10% of live cells in my tumor upon surgical pathology. This meant that TCHP did not do the whole trick and I needed further more targeted chemotherapy to help kill any remaining cells that were living in my body. Had I chosen surgery first, we would have never known and I would have never received my cycles of KADCYLA.

 No part of cancer treatment is a one size fits all so it is important to have serious conversations with your doctors on your care team to ensure you're choosing the right path for your overall outcomes. And pretend this blog post was written in January 2024.

Let the Clinical Trials Begin

  It's official. I qualify for and will be starting the SURMOUNT clinical trial in January 2026. It wasn't without much thinking that this decision was finally made. My family supported me from the beginning and I will be able to see them with my trips to Philadelphia. The clinical trial navigator was very patient as I asked a million questions to ensure I understood what was required of me for the study. My oncologist supports the trials as long as I can be on an aromatase inhibitor to keep my estrogen at bay. I can. It's a pretty set thing that I'll stay off the Tamoxifen at this point.

 

 Both the SURMOUNT and ABBY trials are being completed at the University of Pennsylvania in Philadelphia, PA. It's amazing how a life comes together. I ended up going to Drexel University in Philadelphia for my Doctor of Physical Therapy education. That has now prepared me to feel comfortable in the city of brotherly love, despite living so far away in Alaska.

Philly, here I come!

Tamoxifen Revisited Revisited

 I started writing this post in July of this year and forgot to finish it. Here you go:

 I have previously written a post about tamoxifen. At that time, the consideration was aromatase inhibitor vs. tamoxifen and what is right for me. Per my oncologist, tamoxifen is the better choice at this time due to its bone and heart protective properties as compared to an aromatase inhibitor. The plan is for 2-3 years of tamoxifen then a switch to an aromatase inhibitor for 7-8 to complete the 10 years of treatment.

 I have recently learned of certain supplements, medications, and food that should not be taken with tamoxifen and figured I would share. I was not told of these by my care team.

Supplements:

https://owise.uk/tamoxifen-what-you-should-avoid/

https://www.breastcancer.org/treatment/hormonal-therapy/tamoxifen

https://pmc.ncbi.nlm.nih.gov/articles/PMC10558019/

 Fast forward to now, being off of tamoxifen. I wrote in my last post that I would explain the mechanism of action. Tamoxifen is a selective estrogen receptor modulator (SERM). Due to this, tamoxifen acts as an anti-estrogen in breast tissue, blocking estrogen receptors to stop tumor growth, but acts as an estrogen-like substance in other tissues. This selective estrogen receptor modulator effect means it can improve bone density and lower cholesterol, but also increase the risk of uterine cancer and contribute to menopausal-like symptoms. This matters because I have a distant history of estrogen induced aural migraines. The hypothesis is that the tamoxifen may have recreated the environment for an aural migraine to resurface. Only time will tell.

 All this to say, always speak up if you're feeling something that is off. There are options to get treatment or change treatment depending on what is causing the symptom. Don't just live with it or chalk it up to having cancer.

Tamoxifen Revisited

 I had the fortunate ability to be a secret shopper with my patient experience role while needing emergency department (ED) services on Tuesday. I had floaters in my vision and expressive aphasia with both switching words and not being able to find the word I wanted. While I would have told my husband or family/friend to get to the ED ASAP, I kept working my PT shift and then decided to call my oncologist. He advised that I go to the ED. A caring, compassionate, and timely intake and processing through the ED including a brain MRI later, I got the good news there was no signs of a stroke, brain metastases, or brain lesions. 

 Fast forward to the next day and I get a call from my oncologist to see if I wanted to come in for a follow up visit. I did and based on my horrific ongoing side effects (significant fatigue, brain fog, apathy, weight gain) from tamoxifen along with his hypothesis that tamoxifen may have played a role in what may have been an aural migraine, he recommended I stop tamoxifen for a month, we reassess, and then potentially go on an aromatase inhibitor. I will post on the exact mechanism of action and why this makes sense a different day.

 This sounded great to me because me, the person who always does everything by the book, did not have tamoxifen in her pill box for one week and wondered why she felt amazing and was having everyone say I sounded like me again. My oncologist says that likely confirms his hypothesis but wanted to trial off of it for a month, which he said won’t hurt my recurrence rate.

 Day one off tamoxifen: I felt like posting. I planned ahead. I took the stairs… every time. I helped so many coworkers with what they need and patients with what they need. One said, “You have no idea how much you've helped me.  My husband died 2 weeks ago and my world has been inside-out since then. Nothing makes sense and I've been extremely at odds.  Your call this morning is the first hint of hope.” after I returned a simple phone call asking for resources. I felt like me again.

 Let’s hope this continues.

Mammograms can detect what!?

 Mammograms can detect what!? 

While mammograms are well known to detect cancer, a little known fact is that they may "also be used to assess the amount of calcium buildup in the arteries within breast tissue—an indicator of cardiovascular health." This is very important, especially in the younger female population.

acc.org/About-ACC/Press-Releases/2025/03/20/09/58/AI-Powered-Mammograms

"Heart disease is the leading cause of death in the U.S., with stroke at No. 5. But while cardiovascular mortality rates have been declining, the reduction has been more pronounced among men and remained stagnant among women under 55."

https://www.heart.org/en/news/2023/11/06/mammograms-show-promise-as-tool-for-predicting-heart-disease-and-stroke-in-women

The positive? I didn't have any calcifications present on my mammograms!

Entering the World of Clinical Trials

It's been a while, but it's worth the wait.

I had to let myself recover and focus on one day at a time. I am now 6 months post-chemotherapy. For the first time since I started chemotherapy on January 29. 2024, I feel like me. My energy is returning, my brain is firing, and I feel able to put some effort into more than just living. People are noticing I'm more like myself. All of this is positive, but I am still giving myself grace, because recovery isn't linear.

While I've been working on living, I was sent an email from Outcomes4Me about some clinical trials at the University of Pennsylvania. The article "Pioneering strategy may keep breast cancer from coming back" outlines current clinical trials at UPenn which focus on the chance of recurrence when there is a presence of dormant or disseminated tumor cells (DTCs) or "sleeper cells" in bone marrow and proposed treatment by existing medications already on the market. The article states, "'Our research shows that this sleeper phase represents an opportunity to intervene and eradicate the dormant tumor cells before they have the chance to come back as aggressive, metastatic disease,” Chodosh said. “Surprisingly, we’ve found that certain drugs that don’t work against actively growing cancers can be very effective against these sleeper cells. This tells us that the biology of dormant tumor cells is very different from active cancer cells.'"

I am considering participation in the SURMOUNT and ABBY clinical trials. 

In short, the SURMOUNT clinical trial "screens qualified patients for the presence of DTCs in the bone marrow" via a bone marrow aspirate. This occurs most commonly in the hip area of the pelvis and is known to be very painful. If positive for DTCs, the patient is then "offered enrollment into a clinical trial that targets DTCs to prevent recurrence". In this case, that would be ABBY. If negative for DTCs, the patient remains in the SURMOUNT study and a new bone marrow aspirate is taken every 6 months for 3 1/2 years unless it becomes positive. If it becomes positive within the 3 1/2 years, the patient would again, qualify for ABBY.

Example of SURMOUNT Clinical Trial Method

In the ABBY trial, the patient would take a study medication with the hopes of targeting the DTCs. The patient would be taking either abemaciclib (Verzenio) alone, or abemaciclib (Verzenio) with hydroxychloroquine. Once participants enroll in ABBY, they are required to have in-person provider visits every 28-days (+/- 3 days), so basically once per month for 6-12 months. Treatment is for 6 months (or six 28-day cycles). If the patient continues to be DTC positive after the 6-month bone marrow aspirate, they have the option to continue on treatment for 6 additional months.

Now here's the catch, these studies are located in Philadelphia, PA. 

How much is a life worth? If you watch Forensic Files, it can be for as little as $28. But really, what a moral dilemma between the potential to prevent recurrence of my breast cancer and the time and money it will take to get to the clinical trials. I know the potential benefits of participating are not just my own, but for the future of breast care treatments. It took many pioneers before me to be clinical trial participants to ensure I had the correct chemotherapy, radiation, and surgery for best possible results. 

The Facts (with a reminder that my breast cancer was HER2+ and HR+ or triple positive):

• Triple negative (HER2- and HR-) and HER2+ breast cancers have a higher risk of recurrence and often recur within the first few years (within 5 years).
• HR+ breast cancers have a higher risk of late recurrence (after 5 years).
• Of note, there are many other factors that increase (or decrease) the risk of recurrence but the study focuses on the receptor status so we'll keep it simple.
• So far, in the SURMOUNT study, 90% of patients have negative DTCs while 10% have positive DTCs and are referred to a treatment trial, such as ABBY.
• Abemaciclib (Verzenio) has the following side effects:
• Diarrhea
• Nausea
• Risk of Infections
• Low red blood cell counts (anemia)
• Decreased appetite
• Headache
• Hair thinning or hair loss (alopecia)
• Abdominal pain
• Tiredness
• Low white blood cell counts (leukopenia)
• Vomiting
• Low platelet counts (thrombocytopenia)
• Hydroxychloroquine has the following side effects:
• Nausea
• Vomiting
• Stomach cramps
• Diarrhea
• Loss of appetite
• Headache
• Dizziness
• Fatigue
• Irritability
• Hair loss
• Rash
• Itching
• Changes in skin or hair color (including white spots or dark patches)
• Mild muscle weakness. 

So the question therein lies, do I feel these same side effects as chemotherapy now, if I'm positive for DTCs, and add to the future treatment options for breast cancer, or do I wait to see IF I have recurrence and get treatment with likely the same side effects as above IF and when that occurs?

As mentioned by my loved ones, ultimately, the decision is up to me.