Risky Business

May 2, 2026

Happy spring. I hope you are enjoying the longer days and warmer weather. If any of you want to send some moisture this way, we’d appreciate it!

Our Bleeding Heart did well in spite of having almost no rain this spring.

You may recall that my scans in March showed some of the active cancer areas getting more active (bad news 👎). The good news is that it’s still only in the bones 👍. Things become more challenging if it shows up in the lungs, liver, etc.

I was hoping to participate in a clinical trial but it was full with a long wait list. Waiting for treatment with Stage 4 cancer is not a good strategy.

I decided to try an unconventional approach (instead of doing IV chemo). It’s a bit risky because it’s not standard protocol. My oncologist was not very excited about it saying that in his experience he’s not seen great results. I told him that I’m not typical 🙂 and that I’d like to try it for 3 months. He agreed as long as we do close monitoring.

The conventional approach is that once a drug fails you do not go back and try it again later. This is why I keep saying that I have a limited number of treatment options.

However, there are often multiple drugs in the same class (or type) and while they largely work the same, the way they work differs. For example, there are three different CDK/6 inhibitors and they all work slightly differently.

I’m trying a different CDK4/6 inhibitor (Verzenio). You may recall my first line of treatment was Ibrance, also CDK4/6 inhibitor. Ibrance failed me so I moved on to other drugs.

The CDKs work by targeting estrogen (along with a second drug you take with them). Once drugs that target estrogen fail, you move on to other drugs like chemo or an Anti-body Drug Conjugates (ADC – like Enhertu that also just failed).

There is some rumbling in the MBC research world that it might be possible that the cancer “forgets” why it became resistant to a drug. If you are off of a particular type (or class) of drug for a while, going back to that type might work again.

There have not been clinical trials to test this. Especially for CDKs, the research is limited because these drugs are relatively new.

I had over a 2 year break from the CDK Ibrance. I’m banking on my cancer having forgotten how to resist a CDK and am taking Verzenio.

It’s an oral drug so no infusions (yay! 🙌). It has potentially terrible side effects (boo! 💩). Thankfully, I’m not having any of the bad side effects (grateful! 🥰).

Hoping that the cancer hates Verzenio and I get to take it for a long time!

I’m doing this treatment plan only because of my advocacy. I investigated literature to see what has been published about doing this (basically nothing). I read a lot of support group forums to understand what other MBC patients are doing. I looked into ways to decrease side effects.

I told my oncologist I was going to tritrate up to the full dose. This basically means starting with less meds initially and ramping up. Instead of 2 pills a day, I did one. Then I would go to 2 pills a day alternating with 1 pill a day, eventually getting up to 2 pills a day, everyday. Based on the experience of many other patients this gives your body time to adjust and lessons side effects.

My oncologist was not aware patients were doing this. He thanked me for telling him and told me to let him know how it goes. I’m hoping by sharing my experience he will suggest it to others.

Tomorrow I will have blood work and meet with my oncologist. I’ll get an infusion of Zometa – a bone strengthener. Then I have a pause in medical appointments until June (because May is filled with travel). I’ll have scans in early June and then we will have information about if this treatment is working or not.

In the meantime, I’m feeling good and doing all the things! I hope you are too 😉.

Onward!

New Treatment Plan 💊

March 29, 2026

Hello again. A quick update on where I’ve landed with treatment.

Over the next 2 weeks I’ll start what I consider my 5th line of treatment. If you are interested I’m tracking my treatments on the My Story link of this website/blog.

I say 5th because I’m not really counting the clinical trial I was on. It was a blind trial so you don’t know if you are in the treatment or control group. After the fact I learned I was in the control group so I was really getting the same treatment as before the trial. Anyway, it’s not always straightforward to track treatments.

Speaking of clinical trials – I was hoping to get in to a Phase 2 trial with a “new” drug. Phase 2 trials have limited participation and the focus is to figure out the right dosing. The trial had a wait list of 10 women and the wait list was “not moving”. Sigh. A disappointment.

I’ve decided to try another drug similar to one that I was on before (from the same “class” of drugs). My oncologist says that in his experience he’s not seen great results from doing this. However, I’m seeing more people with MBC (metastatic breast cancer) who are doing this, some with good success.

So, he agreed that we will try it and closely monitor things through bloodwork and how I’m feeling. I’ll have another scan in early June to see if it’s stopped the progression.

I’m going to take Verzenio (Abemaciclib) with Tamoxifen. Fortunately for me, when I had early stage breast cancer I didn’t take any medications. This means they are all an option for me now (#silverlining). Many women with early stage breast cancer take Tamoxifen for 5 or 10 years as a way to prevent the cancer from returning.

Verzenio is a CDK 4/6 inhibitor (and has to be taken with something to knock down estrogen – the Tamoxifen in this case). When I was diagnosed in 2019 the “preferred” CDK 4/6 inhibitor was Ibrance. Since that time, research studies have shown that Verzenio is actually a bit superior. My oncologist told me that if I were diagnosed today he’s put me on Verzenio.

So, we will give this a try. They are both oral medications (nice, I don’t have to go to the cancer center). Verzenio is known to cause GI issues, in some cases severe. I have tolerated most of the drugs really well and am hoping this is the case again.

Am I nervous? Yes.

Anxious? You bet.

Optimistic? Absolutely!

In the meantime, life continues! Maddy and I just got back from a week in Rome. Evelyn and I are planning a trip to Europe in May. Hopefully I’ll be well enough for Glen and I to do a trip in early fall. I’m going absolutely nowhere in April and will be hitting the trails to walk and soak up the beautiful Colorado views! Come visit, I could use walking partners!

Onward!

🌷Stepping into Spring and Uncertainty

March 14, 2026

Happy spring! It’s been crazy warm here with basically no snow this winter. It’s made it a bit easier to get outside but also worrisome.

Christmas in March – Glen and the girls got me a stained glass making class for Christmas. You can see how beautiful the weather looks!

One thing I try not worry about is this damn cancer. There is a lot about my situation that is out of my control. Sometimes it’s hard not to worry and in those cases I only give my self a set amount of time and then I put the worry away.

It’s been a wild three months.

🌷 Radiation to my C1 last fall looks like it was successful in stopping that cancer lesion.

🌷 I was taking a walk in January and my hip/femur (greater trochanter) fractured. It was minor and no longer hurts. Still, walking may = fracture.

🌷 This week I had 5 doses of radiation on that fracture to try to knock down the cancer and reduce any further fracture.

🌷 This week I had a total of 8 medical appointments (5 radiation, a PET scan, an oncology visit, and an echocardiogram).

🌷 PET scan results were not great. Looks like the cancer has gotten a bit more active. Looking at changing treatments.

As you’ve probably learned from me by now, there are a finite number of treatments. Once those run out there is nothing to stop the cancer.

How many treatment lines are there? It varies for each person depending on your cancer subtype. Exact number is unclear (but not a huge number, maybe 6-10ish?). The positive side is that research and clinical trials are making more drugs available all the time. The drug I’ve been on for the past 2 years was not an option for me when I was diagnosed! I just need more drugs to become available and approved!

I don’t know what I’ll do for my next reatment line. We are looking at a clinical trials.

Please, please, talk to your fiends, family and neighbors about how important it is for the federal government to pass budgets on time and to fund cancer research! I know several promising trials that have stopped because of all the nonsense going on with the budget and NIH. It’s not partisan, it’s life or death for some of us.

All of this being said, I’m optimistic that I’ll find a good next treatment and hope that the side effects will be minimal and it will be very effective.

In the meantime I’m doing all the things! So far this year I’ve taken ballet classes, a sketching class, Spanish lessons, signed up to work with a personal trainer and am looking into learning to knit. I have a few trips planned with the girls and will enjoy every single day.

Wishing you all a fantastic rest of March. I’ll share more when I know it.

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)