scans – Life As I Know It

No Different Information

Here we are again. Another month has passed and I’m posting. I thank you all for reading and for your interest. I hope you also learn a tad bit about this hideous disease and share with others.

But it seems like, yes, another month has passed and there is not much to update. In the grand scheme of life, not much has changed for me. (Side note, my recent scans were “fine” and I continue my current medications. Yay!)

Life is busy. There are things to do, places to go, people to see, and dreams to achieve. One day blends into the next with the punctuation of weekends when we can stand down a bit – unless you are retired. (My retired cousin says ‘everyday is Saturday.’)

Seriously, I feel odd sometimes writing these updates because to many of you, there is probably not a lot of new information.

When I first got this diagnosis it was terrifying to me, and also to my friends and family. Here I am 3 years and 8 months later – still alive, still working full-time, still traveling. Still living like many of you.

And yet. I live in 3 month increments. I have no idea if the table will turn and the next set of scans will be the ones that show the cancer has out smarted the medicine. Will this be the month I have to change my medication – and if I do, will it work? What kind of side effects will it have?

So far, I’ve only had to change medication once. That’s pretty f-ing amazing in almost 3.75 years. Hooray for science!

The internal anxiety I have is always present. I’m able to swallow it a lot because work is distracting. My friends allow me think of other things. Being with my family helps me live in the moment.

Today I met with my oncologist. There was a real possibility I would change meds. He said that with the data he has we should stay the course. So, no change in anything. Same meds.

We talked about what is next. I have two options for treatment (Xeloda or Taxol). When that stops working I’ll go to Enhertu. When that stops working I’ll go to whichever of the ones I didn’t chose (Xeloda or Taxol).

There is no cure for this, just treatment. The idea of changing treatment is terrifying – to be honest. Do I show that? No, because I don’t think about it a lot and there is not point in worrying about something out of my hands.

That doesn’t mean that everything is smooth sailing. It’s just not apparent. I have a lot to do, a lot of plans and a lot of new memories to make.

You have that as well. We just don’t often think about the time when we can’t do it, or when we run out of time.

We all run out of time, some of us just know we have less time that others. Very recently someone Glen and I know died from metastatic breast cancer. She and I communicated via email and she was really supportive when I was first diagnosed. She leaves behind a husband and 8 year old son. Her mortality is my mortality and the same for everyone else with this disease.

This being said, I have supreme confidence in science and am looking forward to annoying you all for many years to come with boring posts of non-information. 😃

This was the first outdoor walk, out of our neighborhood that I’ve done since October. My hip is finally starting to really heal.
View from Sandia Peak in Albuquerque. I was there for work.
Glen and I with cousin Dave and Jill. Fantastic (to short) visit. Explored the University. Colorado campus after brunch and before a hike.

~~~~~

Second line of treatment (since June 2022):

Fulvestrant (injection monthly)
Ibrance (oral daily)
Lupron (injection monthly)
Zometa (infusion quarterly)

Looking for Balance

It’s been a busy couple of weeks. I was at the oncologist this past week. Short version: stay the course for this month. Things look “ok”.

Every 3 months I have a CT scan (neck to pelvis) to check on the cancer and see what it might be doing. The results of my CT scan last Monday show nothing remarkable. This is excellent because it means the cancer has not spread. It’s still just hanging out in my bones.

The oncologist ordered a bone scan before my March appointment. The bone scan literally images the bones, toes to top of the skull.

We are a bit worried about the tumor marker from my blood work. The CA 27-29 tumor marker can give an indication if the cancer is active. My value has been slowly rising and then almost doubled last month. This month it dropped almost as much as it rose last month. What does this mean? Unclear. It’s unusual for me to see these big changes so it’s raised some concerns. Tumor markers are not necessarily sufficient on their own to give a picture of what’s going on. The oncologist won’t use this data alone to make decisions. So, we get a bone scan and re-evaluate next month.

I recently wrote about new treatment options for MBC. I was waiting for blood tests to come back to see if Orserdu might be an option. This newly approved medication only works if an ERS1 mutation as developed. I don’t have the mutation, so this drug will not be an option. If I do need to switch medication, the next option is chemotherapy.

These past few weeks have been difficult. In particular I’ve had chronic pain that is tough to deal with, as some of you know. It’s hard for the pain (and MBC) not to take over my life. So, I’ve been focusing on finding balance.

My guess is you are looking for balance too. So many of us are. Too much focus on any one thing in life is unhealthy and yet it’s easy to get swept up.

Thankfully, the past month I was able to enjoy a dance competition Maddy competed in, found a few new shows to watch while walking on the treadmill, met friends for coffee or lunch, and took a long weekend trip to Wisconsin to see some friends and family.

I keep looking carefully at how to spend my time – finding the right mix of fun, rest, and spending time with people who are important to me. I hope you can do the same.

~~~~

Current treatment:
Ibrance, 125 mg (oral) + Fulvestrant (injection) – Prevents cancer cells from dividing + estrogen blocker
Lupron (injection) – induces menopause
Zometa (infusion) – bone strengthener

Update – November 3, 2022

Winter has given us a sneak peak today. First measurable snow of the season.

I had monthly appointments this week. My CT and bone scans were the same as August. This means STABLE MABLE is back. 🙌

My enthusiasm is tempered a bit by a cranky hip.

My back pain is gone for now, and I’m having trouble walking due to hip pain. So much so that my oncologist ordered an MRI, which I had today. I’m hoping it gives me some answers.

The hip pain means my daily walks have ceased – for now.

Fingers crossed the MRI shine a light on the problem.

Onward!

~~~~~~~~

Current meds (2nd line of treatment):
* Ibrance, 125 mg (oral meds)
* Fluvestrant (monthly shots)
* Lupron (monthly shot)
* Zometa (quarterly infustion)

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

~~~~~~~

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.

~~~~~

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)

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 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!

~~~~~~~~~

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

Steady Betty Bones – October 25, 2021

It’s scan time again. Every three months I get two scans: bone scan to check what the cancer is doing in my bones (hopefully nothing), a CT scan to see if the soft tissue / internal organs are clear of cancer.

My bone scan this month was the same as June. So, the possible progression identified in June did not continue – if in fact that is what was happening. Confusing – yes…. I’m “stable” with regard to my bones.

I was supposed to have a CT scan the same day – I had to reschedule to later this week. I’ll get the results maybe Friday, probably next week.

The craziness of our corporate health care system was evident to me this month. (Ok, it’s usually evident, but this was a big example.)

The CT machine at the Cancer Center where I usually get my CT scan is not available. I asked if I could get my CT scan across the parking lot at the hospital where I get my bone scans. My Dr. office said yes. My insurance company said no. Well, they said yes but I’d have to pay for it.

It turns out that the EXACT SAME SCAN is covered by insurance if it is at an “independent facility” but not at a hospital. It is considered a hospital service and that is not covered. 🤦‍♀️

So, I had to identify a new location, call insurance to get it authorized and now I will need to drive to Denver to get the scan. I’m physically able to do this but geez, this is not the kind of run around you want to give someone who is just trying to get through the daily mental gymnastics of having a terminal disease.

I’ll probably post again after I get those results.

This has been an extraordinary month – it’s “Pink-tober” (breast cancer awareness month) which has been super hard this year, some family challenges, and my parents/dad are having health hiccups which precipitated a quick visit to WI. Overall, I’m actually grateful that I can navigate this with success. The silver lining is that my trip to the Midwest was originally to see a dear friend get some well earned recognition and she asked me to introduce her. What a privilege.

Until next week. Keep those fingers crossed the cancer is “behaving”.

❤️

…it’s been an amazing display of fall color here and I’ve been soaking it all in with as many outdoor walks as possible.

Beautiful fall weather – snuck in a walk while Maddy was shopping at the mall. I know – how amazing is it that I live in a place where this is available next to the mall?!?

March 4, 2021

It’s been a wild ride this past 51 weeks. I hope you are all doing as well as possible and are safe and healthy. It’s hard to believe COVID has been with us almost a year.

I had scans 2 days ago. A bone scan and CT scan with contrast. There was no change in the scans meaning that the cancer is stable. No progression. Status Quo. As I’ve said before this is the best possible news we can have. This means that the medication I’m taking has stopped the cancer from replicating.

The tension in our house understandably becomes high during this week of scans. When Evelyn heard I had scans scheduled her reaction was – again? Didn’t you just have them. Yes, yes, I did. But three months have passed and so here we are again.

Normally I have the scans ~2 days before the appointment with my oncologist. This gives the radiologist time to read the scans and write the report, but not too much time for me to fret over the results. With electronic medical systems I can see the scan reports (after they are approved for my viewing). Normally both the bone and CT scan reports come through within a few hours of each other. When I go to open them my hands literally shake. In December I couldn’t even open them and read them I was so nervous. Glen had to do it. Anyway… this month the bone scan came in yesterday but no CT scan. I checked early evening, no CT report. My mind immediately went to places it shouldn’t – the report wasn’t shared because it showed progression (why can’t our minds go down a ‘good’ rabbit hole?). I checked again this morning (after only ~4 hours sleep). No report. I checked right before I left for the cancer center. No report. All day I prepared myself for bad news. Then, Glen texted me when I was in the waiting room and said the report just came through my electronic file and it was stable. I could feel the tension drain from my body.

One of the more interesting aspects of dealing with this uncertainty is that I otherwise go through the day just like anyone else would. I spent the early morning texting neighbors looking for sand for Evelyn’s engineering project. I went on a walk with Glen before 3 hours of Zoom meetings. I talked with colleagues around the state and across the country about all the work related things that have to get done. I’m grateful for all of that because it allows me to push the cancer to the back of my mind. …but it’s always there.

COVID Vaccine! As an additional bonus I managed to get a COVID vaccine today! A Johnson & Johnson shot so I don’t need a second shot. “One and Done.”

I usually see the same techs when I get my scans and so we chat a lot during the process. One of the techs shared with me how to be available for extra doses the vaccine clinic might have at the end of the day. I went Tuesday but no luck. I went again today and they were hedging. In talking to the clinic manager he said they might have a few – he asked how old I was. In Colorado we are moving tomorrow to the phase where 50+ yr old who have two conditions can get vaccinated. I only have one. I said “51 , but I have stage 4 cancer.” I saw his face change expression. He asked me to have a seat in the waiting area and 10 minutes later he came by to get me. He checked me in himself and told me I was getting one of the Johnson & Johnson shots. Today was the first day they were distributing them. I got the shot and waited 15 minutes and was on my way.

Fortunately, my body handles vaccines and all kinds of medications without issue. I’m grateful for that, very few side effects at all.

Bonus vaccine on a good news scan result day!

Glen will get vaccinated at the end of the month and Evelyn will be eligible with the general Colorado population – hopefully by May. Maddy wil have to wait since she is 14. The vaccines are safe and effective – we will still be wearing masks in public and limiting our activities in the short term. Let’s all hope we can get wide scale transmission and mutations under control so we can figure out the new normal!

February 4, 2021

Dear Friends and Family –

A few years ago Evelyn did a project for school where she made a calendar. Each day of the calendar was a different “national” day. National donut day (June 4), national chocolate day (November 11), my personal favorite – national wine day (May 25). I’m writing this on February 4, World Cancer Day. Not even national cancer day – WORLD cancer day. Who knew this existed? Not me. Now you do. Take this opportunity to enlighten others about cancer, donate to cancer research (if you have the means), or reach out to someone you know impacted by cancer. (Sadly the list for that last one is probably substantial).

Today I had my monthly treatment and medical visits. These are every 28 days (Thursday afternoons) and fortunately are relatively short and usually pain free. I typically wait to write until I get all my blood work back, which takes up to 72 hours. It seemed fitting to write today though.

I’m still taking the same medication and on the same treatment plan as when I was diagnosed in July 2019. Earlier this week I started cycle 21 of my medication. (We count the time I’m on this medication by the 28-day cycle of the meds.) I’m still taking Ibrance (you’ve probably seen commercials for it on television) and Anastrozole. Those are oral meds and I take them daily. Today I received a shot of Lupron and an infusion of Zometa. I have very few side effects from the medication. My treatment today was pretty uneventful, which is always good.

Lately I’ve been feeling fine. Some days I feel great! That’s the thing about Stage 4 cancer that is weird. I don’t physically feel bad. I’m not incapacitated. I worked this morning. I styled my hair today – I still have hair. I thought about how I didn’t want to exercise and did it anyway. Probably pretty similar to your day in many ways.

I’ll stay on this medication until it no longer keeps the cancer at bay. When will that happen? No one knows. Will I know when it is happening – will I feel it? Might feel exactly like I do right now, I might have some terrible pain, no one can say. How will we know if the medication has stopped working? When my scans show new cancer.

Speaking of which, I’m up again for scans – will have them just before my March appointment. I get them every 3 months. It feels a little bit like the movie Groundhog Day. A lot of repetition. I’m ok with that. In fact, I am grateful for it. It means nothing has changed and that’s the best we can hope for.

I hope those of you on the front lines of health care or enjoying your later years have received a vaccine or will get one soon. Until we all are vaccinated, Mask Up, social distance and stay safe.

Be well.