Update – October 6, 2022

Hi everyone. I hope you are considering October as Breast ACTION month and are thinking before you “pink” (Pink-tober).

Yesterday I had my monthly check in with the oncology team. It happened to also be the day I got an MRI on my back to investigate some significant pain.

My appointment was “fine”. I started taking Ibrance again last month. However, it’s really compromised my immune system. So much so, that I have to wait another week to restart it. Normally it is 1 week off to let your body recover. They are having me take 2 weeks off. I will go back next week to see if my bloodwork looks better. If it looks better, I restart. If I still have a compromised immune system they will probably lower the dosage.

I had my other treatment (shots) and those seemed to have gone fine.

The MRI was to try to give us some ideas about why I’ve been having incredible (intermittent) back pain. Unfortunately, I don’t have any new answers. This is incredibly frustrating.

So, yesterday was a rough day. None of my medical appointments were great. I also found out that a fellow MBC sister passed away last week. She was diagnosed one month before me. She lived in Colorado Springs and we communicated a lot. Last summer she and her husband were able to meet Glen and I for lunch. We had a lovely visit. She was only a few years older than me, and like I said diagnosed at basically the same time.

Terralissa and Bill Eastburn met Glen and I for lunch, August 2021..

This disease is rubbish.

From the American Society of Clinical Oncology: This year, an estimated 290,560 people (287,850 women and 2,710 men) in the United States will be diagnosed with invasive breast cancer. Breast cancer is the most common cancer in women in the United States, excluding skin cancer. Worldwide, female breast cancer has now surpassed lung cancer as the most commonly diagnosed cancer. An estimated 2,261,419 women were diagnosed with breast cancer (worldwide) in 2020.

44,000 mothers, daughters, wives, friends will die from breast cancer this year. They will die from metastatic breast cancer. That is 120 people EVERY SINGLE DAY.

Every single woman (or man, yes – men get breast cancer) deals with things like I’ve described here. We largely do this quietly all while we are trying to both live a ‘normal’ life and help push the needle on breast cancer research and awareness of MBC.

Everyone is going through something. Give everyone a little grace as you go through your day. And please spread the word that we need more research for MBC, and a cure.

Enough with awareness. We need a cure.

Morning walk at our local (very low) lake.

~~~~~~~

Treatment:

Flaslodex (Fluvestrant)
Ibrance (Palbociclib)
Lupron (Luprolide)
Zometa (Zeldronic Acid)

Next scans, end of October

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.

~~~~

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

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.

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.