“Choosing to have joy is not naively thinking everything will be easy. It is courageously believing that there is still hope, even when things get hard.” – Morgan Harper Nichols
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.
"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."
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.
I’ve reached another milestone in my cancer experience. On June 30th, I got my port removed. It was an in office procedure, unlike the OR visit I required to get it in. A bit of lidocaine and I didn’t feel a thing! Because it was a foreign body, a pocket was formed around it and had to be removed as well. It decreases the risk of a seroma (fluid filled pocket under the skin).
It is just another checkbox off my list. Now it’s a daily pill of Tamoxifen and scans every year for 10 years to keep the cancer away!
My apologies for the long break in posting any information, but I was holding out for my final imaging (Echocardiogram and Mammogram) to determine where I stand after this long 525 days from diagnosis to no evidence of disease (NED)! I am not "cured" and I am not "cancer free". Close but not exact is in remission. The correct description is called no evidence of disease (NED).
"No evidence of disease” or, NED, is a term I use frequently, meaning there is no evidence of visible or detectable disease at the moment. The best example is when a patient who had cancer has repeated imaging and/or bloodwork drawn for tumor markers and neither demonstrates any findings of recurrent malignancy."
Remission
"When I tell a patent they are in “remission,” I typically mean that following a treatment (surgery, definitive radiation, chemoradiation, and/or chemotherapy) there is:
No evidence of visible disease on medical imaging.
I have a reasonable expectation that it won’t come back.
But they have risk for recurrence within a specified period, typically five years." (For me it is 10 years, due to my age)
Cancer-Free/Cured
"I don’t think I would use “cancer-free” until I was ready to say that someone is cured."
In other words, I achieved the best situation I could achieve in my situation with the type of cancer I have. My ongoing cancer treatment is Tamoxifen for 2-3 years and an Aromatase Inhibitor for 7-8 years for a total of 10 years of hormone suppression. I've posted on this before but to elaborate:
Tamoxifen is a hormone blocker. It is a selective estrogen receptor modulator (SERM) that blocks the effects of estrogen in breast tissue. Tamoxifen prevents estrogen from binding to receptors in breast cancer cells, which inhibits their growth and proliferation. This makes it an effective treatment for hormone-positive breast cancer.
Aromatase inhibitors are a type of hormone therapy used to treat breast cancer, especially in postmenopausal women. They work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. By reducing estrogen levels, they can help to slow or stop the growth of breast cancer cells that rely on estrogen for survival.
Today I had a total hysterectomy (removal of uterus) with oophorectomy (removal of ovaries) and salpingectomy (removal of fallopian tubes). This is a surgery that may or may not be required when one has hormone receptor + breast cancer. There are pros and cons to keeping them vs. removing them so it is important to talk through all the options if you find yourself in my situation. For me, they’ve got to go!
I recently returned to reading books, which I used to do often. I thank my patient who shared his own book and allowed me to return to taking time to sit down and read. I also thank my friend and colleague for inviting me to a book club where I’m reading a book I would have never chosen but am enjoying. I’m finding it peaceful and relaxing, taking me to new places such as New Caledonia.
Returning to reading is also possible due to my ability to attend to the task and process what I am reading, which has been limited due to my brain fog. I am finding it is easier to do these tasks and am focused to practice these skills so it continues to get easier and allow me to return to my prior thinking potential. I am taking another course from A Time to Heal which focuses on Brain Fog. I am looking forward to the evidence-based approach to return to my prior level of thinking.
This book parallels my blog, focusing on internal changes rather than external changes. A quote from the book:
"Although we're not all born equally happy, we can all become happier. Revolutionary findings in neuroscience have demonstrated that we can change our happiness setpoint. But it's not through changing our external life. It's through changing our internal landscape."
