MBC – Page 7 – Life As I Know It

Update – September 12, 2022

The quick update: My scans from August looked “fine” (the cancer is not growing, no progression) and my tumors marker bloodwork from this month showed improvement. Lower numbers are better and mine dropped so that is also encouraging!

So, we celebrate!

I’ve been fortunate to have the opportunity to travel (work and pleasure) and generally feeling good. Generally.

I had to go to Pasadena for work and stayed for the weekend. Maddy flew out to join me and we spent the Labor Day weekend with my BFF. We played tourist on Saturday in the 100+ degree heat.

It’s amazing to reflect back on time – Laura and I met when I went to grad school in Davis, CA. She needed a roommate and I needed a place to stay. That was 1993 – before social media, before cell phones. We had a phone call – I think – and that was it. We were roommates. Little did I know I was gaining a fourth sister!

It’s because of science that I’m able to spend time with her and her daughter. Science that has let me live a pretty “normal” life since this diagnosis of stage IV (metastatic) breast cancer. If this were 2010 or even 2015, the conversation would be very different. I would not be creating these new memories. I’d be recovering from chemo that probably would not work very long.

I sound like a broken record – live your life. Really. Do those things that have meaning and will matter to you a year or 5 years or 10 years from now. It’s way too easy to get caught up in the day to day and slide through life.

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Longer science-y version

I withdrew from the clinical trial. I decided I was not comfortable with not knowing if I was getting medication or the placebo. To be clear, I was getting the standard of care – meaning that I was getting the medication that is normally prescribed.

On Wednesday of last week (5 days ago) I re-started Ibrance, the CDK 4/6 inhibitor that I was on before. This is paired with a drug that blocks estrogen. That drug for me now is a shot called Fluvestrant (or Flaslodex). The shots don’t bother me so much when I get them. I haven’t had much in the way of side effects – or so I thought. I’m thinking this shot is messing with my back.

The past few months I’ve had sporadic pain in my lower back. So much so that it’s hard to move around, even walk. It’s hard to pinpoint what is happening, but I’m now thinking there might be a correlation and this is a side effect. (I actually had an episode this past weekend that lasted 24 hours during which I could barely stand up and walk.)

Fluvestrant is a “Selective Estrogen Receptor Degrader” (a SERD). This means that it messes with the estrogen receptor on cells. You can think of the receptor as the thing the estrogen attaches to. It’s kind of like a docking station. This medicine messes up the docking station so when the estrogen tries to attach to a cell it can’t. My cancer feeds off estrogen – if it can’t connect to the estrogen, it can’t proliferate and grow.

Previously I was on a different drug that prevented the creation of estrogen. The thought is that the cancer figured out what was going on and found a way to work around that to grow. So, I had to switch treatments.

Hopefully this SERD will work and for a long time!

I also continue to get an infusion of a bone strengthener every three months (Zometa). I had my infusion on Wednesday also. My veins tend to roll and are not easy to get an IV into. I thought a new nurse hit the jackpot until the saline started going into my arm. Nothing major, but it was uncomfortable and they had to try a different location for the IV. Certainly not the end of the world but one of those things you deal with living in Cancerland.

Second IV did the trick; red area was the miss

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Current meds: Ibrance (125 mg), Fluvestrant, Zometa, Lupron

Science – August 15, 2022

Summer is slipping away, I noticed the air felt different yesterday afternoon during a walk. I’m sitting outside as I write this listening to the soft sound of rain. The monsoon kicked in and we’ve had a lot of wet afternoons and evenings.

Update short version:

I had medical appointments last week.

My CT scan (which is imaging of my chest, abdomen, pelvis) was “stable”. Excellent news! We DO NOT want the cancer to migrate to the soft tissue organs. It’s much more difficult to manage.

My tumor marker blood work rose again (not great, we want lower, not higher). This alone is not evidence of how things are going.

My oncologist is good with the CT scans so we continue onward. The new medication may be working. (I’m nervous and concerned because I have lobular breast cancer which can migrate to the GI track and other places and it does NOT show up on imaging.)

So, onward! More medication, more walking daily, more trying to be intentional. I hope you all are living each day to it’s fullest. You are not guaranteed tomorrow.

If you are on Instagram my MBC account is @nottodaymbc

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Longer version. I’m in a clinical trial where I don’t know if I’m getting the extra medication being tested or a placebo. In researching it more, I’m thinking I just want the actual meds. 🙂 They are FDA approved for this use, the trial is to see how effective they area.

I’m a HUGE advocate and proponent for science. You all know that.

This clinical research trial (CRT) is basically taking the “regular” medicine alone vs. taking the “regular” medicine with an “extra” medicine. The phase II trial showed that the “extra” medicine extended the time before a breast cancer patient had progression. (Progression is when the cancer finds a way to grow.) The trial I’m currently enrolled in is to determine how much more time a patient gets before progression.

Like I said, I’m all about science.

But this is personal. This is literally a matter of life and death.

I might be getting the “extra” medicine and then that would be great. I might be getting the placebo and missing out on the benefit of the other meds.

I don’t think I’m willing to risk not getting the “extra” medicine.

If I withdraw from the trial will it set back science? Yes, maybe a little.

Will it give me piece of mind to know I’m getting the actual meds and not the placebo? Yes, for sure.

What if I’m already getting the “extra” meds? I don’t know. Maybe I am, maybe I’m not. There is a 50/50 chance.

I’ve been thinking about all of this a lot; especially since my cancer tumor marker bloodwork is not great. Why are those numbers rising? Is it because they are unreliable or is it because this lobular breast cancer (that doesn’t show up on imaging) is growing in some other area?

So. Much. Uncertainty.

I really thought that science was more concrete than this. This is more like art mixed with science with a dash of uncertainty sprinkled in.

So what to do?

Stay positive – do whatever I can to keep a positive mindset and know that I’m doing all I can to be as healthy as possible.
Be informed – try to read as many scientific articles about this trial and the medication as possible

Meanwhile, life.

Cara was here visiting and we went to Colorado Springs for ziplining and whitewater rafting.

Evelyn moves in to the dorms today at the University of Colorado.

Maddy starts her sophomore year of high school on Thursday.

Glen and I celebrated our 21st wedding anniversary last week.

I’m not letting life pass me by and you should not either. Seize the day.

Rafting on the Arkansas River. I’m in the bright pink shirt. Cara is middle row closest to camera and Maddy is far side of the boat, second back.

Hiking with Glen, late July. We are so fortunate to live somewhere with beautiful vistas!

Maddy spent 5 days in Wisconsin and then Cara 5 days here. We went to Meow Wolf in Denver and then to dinner as a last family adventure before school starts.

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Current treatment:

Fluvestrant (Flaslodex) monthly (2 shots) – Selective Estrogen Receptor Degrader (shuts down estrogen)

Lupron monthly (1 shot) – puts me in menopause

Zometa, quarterly (infusion) – bone strengthener

Maybe Verzenio (CDK 4/6 inhibitor) or maybe placebo (clinical research trial: postMONARCH)

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.

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.

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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.

What I want for Christmas + Update December 21, 2021

It’s the holiday season and doesn’t seem like it thanks in part to our warm weather. As our immediate family prepares to celebrate, I’m both happy and filled with anxiety.

I have not been feeling great the past month – more aches than usual and general discomfort (that has not risen to the level of ‘pain’) along with fatigue. My dr. appointment last week shows that the blood test for the CA 27-29 tumor marker (which is an indicator of the amount of circulating breast cancer cells in blood) jumped up 30 points. It’s now higher than when I was diagnosed. (122 at diagnosis (7/2019), lowest value was 42 (2/2020), rising steadily since then, currently at 146. Below 38 means no active breast cancer.)

What does this mean? My oncologist wants to get some scans to confirm. Between the blood work and how I’ve been feeling, I will not be shocked if the conclusion is that this first line of treatment has failed.

As a reminder, once a treatment fails you can’t go back to it. There are a finite number of treatments so I want to stay on each one as long as possible. There is also no guarantee that a particular treatment will work at all.

We knew this was coming. If I know the treatment is not working I’d prefer to get started on a new one with the hope that it knocks down the cancer. My anxiety is coming in mainly because of COVID.

Sadly, a select number of people in the U.S. have made COVID a political issue and some people are thinking that they don’t need to worry about COVID because “they will be fine” even if they get it.

The newest variant, Omicron, is spreading very quickly and has mutated enough that there are breakthrough cases for vaccinated people. And it’s critical to note that vaccinated people who get COVID typically do not get a severe case and do not need to be hospitalized.

If I get COVID between now and my scans, I can’t get my scans. If I get COVID I cannot enter the medical facility to get my scans and that means I can’t confirm what the cancer is doing and move to a new treatment plan if necessary. I cannot explain the high level of anxiety this brings to me.

It also makes me sad, angry and disappointed.

I – and my family – should not have to hide away from society to avoid COVID.

Each time someone is infected with a virus it has the opportunity to mutate. Vaccines don’t cause the mutation. Vaccines reduce a virus’s ability to infect people. This gives the virus less opportunities to mutate.

If everyone would get vaccinated, we would likely see mutations of COVID slow or stop.

The COVID vaccine is safe and effective. It reduces severity of disease. Even if you are not at high risk (e.g., young, healthy) you should get the vaccine to help stop the spread and mutations.

There is a disinformation campaign in the U.S. that is mind boggling. People pushing this misinformation have been vaccinated and many have gotten the COVID booster!

People who have not been vaccinated are more likely to end up in the hospital. Hospitals in Colorado are overwhelmed with unvaccinated patients. Even in Boulder County (73% vaccination rate) the hospitals are near capacity with patients from other parts of the state where there are fewer vaccinated individuals coupled with limited health care options.

Hospitals at capacity are not good for cancer patients or anyone else – think car accident or an older individual who fall and might need hospital care only to find there are no beds available for them to be treated. I know of one cancer patient who needed a port put in so she could more easily take her chemotherapy treatment. It was classified as an “elective” procedure and was de-prioritized due to COVID overwhelming her hospital.

If that’s not enough to convince you of the adverse impact of COVID – we will continue see professional sports games cancelled or postponed because of so many COVID infections! You won’t even have that entertainment as you recover at home from COVID.

Much of this can be avoided. Please, please get vaccinated and encourage others to do the same.

Between now and my scans on January 6, I’m going to hope that anyone I encounter is a thoughtful and caring individual who fully vaccinated.

What I want for Christmas is for everyone to get the (free) COVID-19 vaccine and reduce their risk and mine of serious illness.

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Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in January.

Gratitude – November 25, 2021

Time marches on and today is the Thanksgiving holiday. As I sit here with the Macy’s Thanksgiving Day parade on, silent in the background and a bright blue sky with frost on the grass, I’m thinking about all the things to do today. And I’m grateful for all those things. I feel “fine” and have the energy to bake pies and help Glen grill a turkey and make a last minute run to the grocery store. Most of that will happen this morning while our teens sleep.

I’m grateful for science too because I have science to thank for this. My doctor appointment last week was “uneventful” largely because the medication to keep my cancer from progressing seems to be (mostly) working. My blood work looked fine and my CA 27-29 tumor marker was steady from last month.

At the appointment we talked a lot about what my scans from last month showed. An enlarged lymph node and a small new nodule in my lung. I remembered that I got my COVID booster 3 days before my scan and the enlarged lymph node was on the side where my shot was. We all think (and hope) that is the reason for that. The lung nodule – who knows?

A friend asked me how I’m doing with so much uncertainty. I believe there are two ways to approach this. I can panic and fret about if the spot in my lung is cancer. I don’t think that is a good choice of energy. I cannot do a single thing about this lung nodule and won’t know more until after I have scans in January. So, I spend the time until then soaking up life and doing things that are meaningful to me.

I’m choosing to live in each moment as much as possible.

I’m trying to read more books, go on daily walks outside and celebrate milestones. Maddy turned 15 earlier this month. Her Golden Birthday (15 on the 15th). We had a birthday weekend celebration that included a movie, dinner, a surprise party and two cakes.

Evelyn got her senior pictures and is busy applying for college. She’s interested engineering. We see less and less of her as she and her friends do more and more together (thanks to vaccinations!).

Glen and I are enjoying being “office mates” and continue to find time for walking and cooking and are experiencing more and more empty nester moments as we find ourselves home alone.

I hope you all have a relaxing holiday and find the time to do things that are meaningful to you.

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Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in January.