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Uncertainty – July 15, 2022

Uncertainty is tough. We all deal with it everyday and it’s stressful. Hopefully we all have coping mechanisms to deal with it.

Uncertainty with health is a different level for me and probably for anyone with a chronic or life threatening situation.

Last month my oncologist and I agreed to change my treatment plan because it seemed like it was not effective any longer. That’s a hard thing to process.

While there are “Standard of Care” treatment plans for metastatic breast cancer (MBC), it’s not as black and white as you might think. There is room for the doctor to try to tailor the treatment to the patient. Whenever there is a change in treatment there is opportunity to enroll in a Clinical Research Trial. Trials are important because it is a key part of the process in how new treatments are discovered and approved.

My treatment is standard of care “plus”. In this CRT I’ve enrolled in (postMONARCH) I may be getting additional medication or a placebo. It’s a blind study so I don’t know which I am getting.

I don’t know if it is working. I won’t know until several months have passed.

I will have scans again in early August. This is much sooner than I had been getting them because the CRT requires CT scans every 8 weeks. (That also is concerning to me.)

This morning I received bloodwork for my CA 27-29 tumor marker. It’s jumped up a lot. Way more than it ever has. I don’t know that it means the medication is not working – it’s too early to tell I think. I am reading that sometimes when you start a treatment the counts can spike (Patient Guide to Tumor Markers).

So. Much. Uncertainty.

How do I deal with it? Good question.

Honor the uncertainty. It’s not helpful to bury my head in the sand and ignore this. It’s not going away so figuring out how to manage my stress about it is important.
Spend time meaningfully. I feel better when I’m doing something. Keeping busy doing things that I value or spending time with people I care about helps.
Trust the Science. The science of medicine continues to advance. Medical practitioners go through extensive training to best treat patients. I also believe there is a mind-body connection so mental health is equally important.
Take care as best as possible. Continue to eat healthy, move as much as I can, sleep. Control those things I can control. (As evidenced in the photos at the end of this post.)

Life is good and it also has terrible elements. Don’t let those bad moments outshine the good.

Walking in early morning to beat the summer heat.

I LOVE to sit outside in summer and we added lights to make the space more inviting in the evenings.

We have a nice walking path that circles our neighborhood. It’s a nice 15 minute walk that helps me clear my head.

3 years

3 years ago was the summer of 2019. Before COVID-19. Life was normal.

What were you doing that summer? What were your hopes and dreams? Did you plan to reach out to that old friend? Or get in better shape? Clean out that closet? Eat healthier? Maybe you wanted to travel somewhere on your bucket list, did you go?

What have you done in the past three years to make yourself happy? To make the lives of others better? To make the world a better place?

If you are like me, you have ideas in your head of things you want to do. Lots of things. Often, these are things for later, for when the kids are older, or out of the house. For when we are not so busy at work. For when we have more money. For tomorrow.

But life is funny. It has a way of moving forward with, or without us.

It’s easy for us to get into a routine. Routine is good – it gives us structure. It gives us a framework for our daily life.

Routine is also safe. It’s an easy excuse for why we don’t go out of our comfort zone, out on a limb, take a risk. Do something out of the ordinary.

Three years sounds like a long time. If you look back at that summer, it may not seem that long ago. (Yes, ok, COVID made time slow down, I admit that.)

Life slips away from us. Life is all the little moments aggregated together. If we are not careful, we get swept up in the everyday and forget to take a step back and look at the bigger picture.

What if, in the summer of 2019, you were told you had a terminal illness and that the life expectancy was only a few years? Would you have spent the last 1095 days doing what you did?

It’s hard not to take each day for granted. It’s our responsibility to make the most of each day, make the world a better place, and leave this world better than when we entered it.

Don’t wait.

Update: New treatment & trial – June 16, 2022

Well, yesterday I was at the cancer center to start my new treatment. This is the second “line of treatment” for me. As I’ve mentioned before, there is no cure for MBC; there are a number of treatment options, or lines. The goal is to stay on each line of treatment as long as possible.

Leaving the cancer center – finished all appointments (including a ton of blood draws) and am now on my second line of treatment. Fortunately, this is ~5 miles down the road from my house so easy to get there.

My first line of treatment was one month shy of 3 years. (Personally I was hoping for at least 5 years!)

My second line of treatment includes a clinical trial. I recently put together a web page about Clinical trials. You can view it here: Treatments & (Clinical) Trials. I don’t have it linked anywhere yet on this blog and will soon.

I have the type of breast cancer that grows in response to estrogen (estrogen receptor+/progesterone receptor+: ER/PR+). So, we try to eliminate the estrogen as much as possible. I was taking an Aromatase Inhibitor (AI) (Anastrazole), however, that seems to not be working any longer.

A standard second line of treatment is Fulvestrant (aka Flaslodex) which is a “SERD” Selective Estrogen Receptor Degrader.

A SERD blocks estrogen in a different way than an AI. Fulvestrant (a SERD) blocks the effects of estrogen on hormone ER/PR+ breast cancer cells by sitting in the estrogen receptors on the cells. If Fluvestrant is in the receptor, estrogen can’t attach to the cancer cell and the cell doesn’t receive estrogen’s signals to grow and multiply. It also changes the shape of the estrogen receptors so they don’t work as well. (breastcancer.org)

Fluvestrant is given by injection into a muscle – the back of my hip (literally a pain in my ass!). I will get 2 shots monthly.

I’m also doing the postMONARCH clinical trial. In addition to the monthly injection of Fluvestrant I am taking an oral medication twice a day. I don’t know if I am getting medication (Verzenio, a CDK 4/6 inhibitor) or a placebo. A clinical trial includes a lot of documentation and paperwork! More on that later.

The study is trying to determine if adding Verzenio to Fluvestrant gives better results: longer progression-free survival (PFS). They are probably going to look at overall survival (OS) as well.

We are leaving for vacation in 2 days. We are all crossing our fingers that I don’t have any significant side-effects or adverse reactions. Hawaii here we come!

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Second line of treatment: Fluvestrant shots and clinical trial (Verzenio or Placebo, oral), Zometa infusion, Lupron shots

Keep on Swimming – update, June 7, 2022

It was a good run. I’ve been on the same (first) line of treatment for nearly 3 years (July 2019). Alas, the oncologist thinks that the medication is failing me and that we should move to the next line of treatment.

It’s important to note that the medication is failing ME and not the other way around. I’ve done nothing to cause this.

I had a Zoom call with my oncologist this morning because I’m still under the weather from COVID. He went over my bone scan and CT scan results.

Short version – The CT scan showed some mild bone disease worsening and new small fractures on the C7 and T3 of my spine. Given that we’ve had the “should we change treatment?” conversation for ~6 months, he thinks it’s time.

Previous areas of my spine impacted include C7, T9, T10, L4 and S1. Latest scans show more fracture on C7 and also T3.

So, disappointing but not surprising or unexpected. The doctor was very upfront with me from the beginning – we have medication to treat Metastatic Breast Cancer (MBC) but no cure. Eventually all the medication will fail. It’s not a matter of ‘if’, rather ‘when’.

We are finalizing my next line of treatment. The standard of care is a drug called Flaslodex (aka Fulvestrant). I’ll share more about it later.

I have 2 options: (1) Flaslodex alone or (2) randomized clinical trial with Flaslodex and Verzineo (Abemaciclib, another CDK 4/6 similar to Ibrance). I opted for the trial.

A research nurse will call me about the trial and we will sort out details.

Sigh. Knew it was coming. Still a bit of a gut punch. This is the long game though…

I asked about progression free survival (PFS) on Flaslodex. He said his general experience is 1-3 years. He said I did better than average on Ibrance and so that could be an indicator of how well I respond to treatments. Overall, of course, hard to say.

I may have to go a bit without treatment so it flushes out of my system before starting the new one, especially for a trial so that they can be sure the effects are from the new medications.

As of today, still taking first line treatments (even though they are failing me): Ibrance, Anastrazole, Lupron, Zometa

Cancer and COVID – June 2, 2022

I don’t have much of a cancer update, sharing just to touch base.

Cancer-wise things have been pretty status quo since March with blood work and I’ve not had any weird new side effects or aches/pains. My tumor marker (CA 27-29) is still much higher than we’d like. The only way to know what is going on is to get scans.

I had scans the end of May. However, I also got COVID right after that. So, I got my scans but could not go for my appointment to get the results. I also could not go for my monthly lab visit and treatment.

I have things rescheduled for next week, when I’m hopefully feeling better.

Glen and I both got our second booster in mid-April, so I’m as current as you can be with vaccinations.

I know some people are pretty indifferent to getting COVID and they feel like it’s just something that we have to deal with and it is an inconvenience. That is largely true for the healthy population.

For those of us with life threatening health conditions, getting COVID impacts our ability to be treated, which can impact overall health and survival.

Each month I get a shot that puts me in menopause. This is important because it shuts down my ovaries and keeps them from producing estrogen. The breast cancer feeds on estrogen. I could not get the shot because of COVID.

I share this not for sympathy or pity or anything like that. I share because COVID is no joke and impacts many people in adverse and very serious ways. Please continue to take it seriously.

Get vaccinated. And boosted.

If you have any symptoms or have been exposed, wear a mask, it’s not the end of the world to cover up for a few days. 🙂

I’ll know more about any health changes later next week and will post an update then.

~~~~~~~~~

First line of treatment. Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions.

March 27 – doing life right

March 27, 2022

On March 27, 2009 I was 39 years old.

Our girls were 2 and 5.

We lived in Illinois and had accepted jobs in Colorado.

We were selling our brand new home and house hunting in Colorado while working full time and part-time remotely in our new jobs.

Glen was planning for an 8 week field campaign for late spring.

And I was dealing with breast cancer during all this.

March 27 I had a single mastectomy and we thought we were on the road to putting this all behind it.

This morning I looked at my “Facebook memories” like I do each morning and was sad. And it’s ok to be sad, for a little while.

2012 Facebook post. I still think Young Survival Coalition is amazing!

And yet….here we are.

Thinking back to 2009, I did become aware of the statistic that 30% of breast cancer “survivors” who are ‘cured’ have it come back as metastatic, uncurable.

I also firmly believed I was not going to be in that small, elite group.

I have to say, this is the worst club I’ve ever belonged to, and it has the most amazing individuals.

Reflecting on what I would do differently over the past 13 years….not much.

I eat healthy, I could have exercised more (who couldn’t?!) I prioritized sleep around 2015 — so yay me. My focus has been on my family and my career.

I see many people with a cancer diagnosis, including metastatic breast cancer (MBC) comment that their diagnosis “changed their life”. It caused them to reprioritize. It helped them focus.

With all due respect, they were doing life wrong.

A cancer diagnosis shouldn’t make you change your life. You should make those changes now. I didn’t need cancer to ‘show me the light’.

Take care of yourself.

Eat healthy (Eat food. Not too much. Mostly plants. -M. Pollan). Move your body. Spend time with people you care about. Have a hobby and spend time doing things you enjoy (and yes, that can be work, but not all work).

Am I more cognizant of my choices with my MBC diagnosis? Yes, of course.

Is MBC at the center of all decisions I make? No, of course not.

I never, ever thought this would be my life. It changes on a dime as many of us know. I’m not brave or strong (maybe a little). I’m living the life I was dealt.

Make the most of your time on this planet. You don’t get a second chance.

March 16, 2022 -Sneaky Lobular Breast Cancer

Where to start – I had scans on Monday, March 7. The fantastic news is that both my bone scan and CT scan were stable! What does that mean? Based on the imaging it looks like the cancer is quiet in my skeleton and it does not appear to have spread elsewhere. Yay! The oncologist uses the scans as the measure of how well the medication is working so – we stay the course. Same medication, go back monthly for checks. Scans again in 3 months.

Every month I also get blood drawn for a tumor marker test (CA 27-29). The blood tests may or may not be reliable as an indicator of cancer activity. My oncologist orders this test but doesn’t make treatment decisions based on it alone.

A CA 27-29 value of under 38 means no active cancer. At diagnosis I was 122. As I’ve mentioned previously, my numbers dropped to a low of 42 in February of 2020 and have been rising steadily since then. This past month it jumped a lot. The most it ever had. I’m not going to lie, it freaked me out. That number is now at 185. (Note, numbers can vary wildly, I know some MBC patients with values around 3,000.)

Why worry about this if the data might not be reliable?

Well, I have invasive lobular breast cancer. The cancer is missing an enzyme and so instead of forming in a mass, it forms in a string. This means that lobular breast cancer doesn’t generally show up on scans.

So, is the tumor marker rising because it’s just not reliable for me? Or is it rising because the lobular cancer is active but just not visible on scans?

🤷‍♀️

We just simply don’t know. Lobular breast cancer is a very distinct subtype and also very understudied. As a result, it is treated just like the more common ductal cancer.

In the meantime, I continue to work, walk and spend a lot of time with the family. We took a few days to go up to the mountains to ski with family and it was fantastic to be able to go do that.

Take care of yourselves. Get vaccinated and boosted and really live today!

The crew at Copper Mountain ski resort. It was gorgeous weather!

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First line of treatment. Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions.

February 21, 2022 – Help me take action

Living with cancer shines a light on many things that the average person is not aware of.

In America, our health insurance is largely tied to our jobs. If you get a cancer diagnosis you may not be able to work and therefore lose your insurance. The irony is that when you need insurance most, it’s hardest to get.

Did you know that If you have stage 4 breast cancer and need Medicare there is a 24-month waiting period? There is also a 5-month waiting period for Social Security Disability Insurance benefits.

Statistics on how long people survive with stage 4 breast cancer is unclear*. Previous statistics showed the average survival rate was 2-3 years. Yet there is a 24 month waiting period to get Medicare coverage. See the math problem here?

You can help me get the attention of lawmakers. It doesn’t even require a phone call.

The Metastatic Breast Cancer Access to Care Act (S. 1312/H.R. 3183) would amend the Social Security Act to eliminate waiting periods for social security disability insurance benefits (SSDI) and Medicare coverage for eligible individuals with metastatic breast cancer.

You can support this act by filling out this online form. It will generate a letter to your elected representatives. I just did this and it took all of 5 minutes. Click on the text below.

Find Tools to Take Action

*Survival rates for stage 4 breast cancer is messy. The introduction of CDK 4/6 inhibitors in 2015 was a game changer. It increased life expectancy significantly. In addition, people diagnosed with stage 4 breast cancer are not counted in national statistics until they succumb to the disease. That is another post by itself.

February 15, 2022 – Update

Happy belated Valentine’s Day. I hope you were able to celebrate those in your life you care about and celebrate yourself!

My monthly update is pretty boring, which is how I like it.

I saw my medical team last week for a blood draw, check in and treatment (which is just a Lupron shot in the clinic). Overall things are “fine”.

My tumor marker number has been steady. 146 in December, 146 in January, 147 in February. Does this mean anything? Maybe. Possibly not. The marker (CA 27-29) is used to give information on the cancer throughout my body. This steady number is good in that it means that there is no reason to think that the cancer is actively growing and spreading.

Of course, we can’t know that for sure, that is where scans come in. I will have scans again in early March.

Sounds a bit like a movie on repeat. Yup, sure does.

~~~~~~~~~

First line of treatment. Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in early March.

January 13, 2022

Hi everyone –

I hope 2022 is everything you hoped 2021 was going to be and more. For me, 2022 is off to a better start that expected. I’ll take it!

I had scans last week (bone scan and CT scan). I met with my oncologist earlier this week.

Short version: We stay the course. I’m staying on the same treatment for the moment.

While my blood work (tumor markers) jumped quite a bit in December and I had pain in my right ribs, my CT scan came back clear. My bone scan was largely not changed.

Also a win… my cancer center got a new CT/PET imaging machine and it’s sophisticated enough that I do NOT need to drink barium before the scan. I cannot even tell you how excited I was to learn this.

Overall, I’m still feeling decent. Last week I actually did 2 runs on the ski slopes at Winter Park! Yay me.

In the lift line at Winter Park Ski Resort with (L to R) Glen, Rob, Maddy, Paul and Evelyn.

Longer version:

The CT scan checks for cancer in the soft tissue (lungs, liver, abdomen). In October you may recall there were two items noted by the radiologists. One was enlarged lymph nodes on the left side. Those are gone/normal. We suspected it was a result of my COVID booster and we were probably right. The second was a nodule in my right lung (which are apparently common for everyone). There was no mention of it on the report. Yay!

The bone scan checks the status of the cancer in my bones. The cancer had migrated to my spine, pelvis/hips, shoulders and ribs. My imaging report was largely stable. They noticed “increased uptake” in my hip, where I already knew the cancer had traveled to.

What does this mean?

Unclear. It might mean progression. Might not. ….maddening right?

So, I was given the option of changing to the next line of treatment or staying the course. Glen says (and I agree) we are playing the long game so we stay the course.

The oncologist says this is a gray area. We could change treatments because maybe there is progression. The tumor markers make it look like progression (but tumor markers can be unreliable), but the scans don’t show any progression (but my kind of breast cancer – lobular breast cancer – doesn’t always show up on imaging well). It’s complicated.

I will have scans again in 2 months.

So, for now I continue on my first line of treatment (below). I am on cycle 33 of treatment (cycles are 28 days). This is my 30th calendar month of treatment. It’s hard for me to comprehend that my diagnosis was well over 2 years ago.

Life changes on a dime. We have no control over it. We saw this recently with the fires in Boulder and over 1,000 homes lost and families displaced and losing everything.

It’s hard not to take life for granted when things are going well. Believe me I know. I largely had 50 years of it. But really, we are only guaranteed today. Make the most of it.

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First line of treatment. Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in March.