progression – Life As I Know It

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!

☀️ More Radiation ☢️

Happy New Year!

I hope the new year is treating you well. We were fortunate to be able to spend time with family in Wisconsin and then Rob, Paul and Cara came out to do some skiing over New Years. Escaping to the mountains and Winter Park is always a good time!

It’s been sunny here – pretty typical for Colorado. I love the sun so I celebrated the winter solstice and the increase of solar radiation 🌞. I’m very happy the sunset continues to move later and later into the evening.

While I welcome more radiation from the Sun, I’m less thrilled with the fact that I will need to have some medical radiation ☢️. New pain developed in my left hip and leg a few days after Christmas. After an MRI and appointment with my neurosurgeon, we’ve confirmed the pain is real and related to progression of the cancer.

It looks like the L4 and L5 vertebrae are growing more tumor. Recall in October I had surgery to remove tumor on my L4 and L5 that was pinching my spinal cord. It’s grown back. It also looks like my S1 vertebrae (sacrum, just below the lumbar region) has notable progression. This is new cancer activity. Clearly the cancer is active and has grown back over the past 2 months.

I stopped taking Ibrance in September, I continued to receive Fulvestrant shots through early November. I started taking Xeloda (oral chemotherapy) in December. I continue to take Xeloda.

So, the cancer is active and we need to figure out how to stop it. The best path forward is to stay on my medicine so it has the opportunity to get the cancer under control.

Surgery would require me to stop my cancer medication. That’s not a great option because this would allow the cancer to continue to grow. My medical team has told me radiation is the best option.

At this point I’m waiting for the cancer center to call me to set up the appointments. I will have an initial appointment where they plan out what they are going to do and then I will go to the cancer center daily for the radiation treatment.

I’m grateful I have an option other than surgery and I’m looking forward to working with the radiation team to get started. In the meantime I’ll be working as I can and aiming to keep moving. My physical therapist has given me many good exercises and I’ve ordered some walking poles specifically designed for recovery. The poles should arrive this coming week and I’ll be getting outside as soon as I can with them. (Neighbors, if you see me, come on out and join me – I’d love the company.)

I hope that you all are having a great month and are doing all the things that make you happy and that are good for you.

Onward!