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!

Thankful 💖

We are in the throes of fall and the Thanksgiving holiday is less than a week away. For many people, this time of year causes more reflection. For me, it’s mostly gratitude.

I’m grateful that I am able to celebrate another holiday season with my family. I’m grateful that most days I can live my life like I don’t actually have a terminal disease. I’m grateful for friends and family that support me and I’m grateful for science and scientific researchers who are working to find more treatment options for me.

I’m grateful that my oncologist is top of the game and is always a step a head of me. I appreciate that because, as you can imagine, I’m the kind of patient that comes with questions about new drugs and clinical trials.

Speaking of which, I spent all of yesterday afternoon researching clinical trials. Clinical trials.gov is a database of every clinical trial happening in the U.S. As you can imagine there are tens of thousands. Fortunately they have a decent search feature.

Even better are two trial search sites that focus on breast cancer. The Storm Riders site allows you to search for any trial related to breast cancer (any stage). It’s a fantastic resource. If you know anyone with breast cancer I hope you will share it with them.

The other site is Metastatic Trial Talk. This one is focused on stage IV, metastatic disease. In spite of searching and reading through many, many trials, I did not find any that were particularly helpful for the next treatment line. That was a little disappointing.

Last month my oncologist shared a trial with me for my next line that basically compares two different types of IV chemo. While that is fine, I’m really hoping for something that doesn’t require me to go in to the cancer center every week for an IV infusion.

I’m still taking Enhertu and the side effects have stepped up their game lately. Actually, I don’t know if they are side effects or just bad luck with something else.

I have tingling in my left arm that comes and goes. I had a Brain MRI and MRI of my cervical spine. The brain MRI was clear (yay!) and the cervical spine showed that the openings in some of my vertebrae where nerves exit are a bit too small and pinching the nerves, potentially causing the tingling.

What is causing this in my cervical vertebrae? I met with my neurologist and they are convinced that it is not a result of cancer. My oncologist thinks the same thing. What did they say? “This kind of thing can happen when you are 50+.” I don’t buy it. I think there is something going on that is causing it, likely cancer.

I also have a blood clot under my left collar bone. That could be causing the tingling. I’m on blood thinners now to prevent any new clots from popping up.

To top things off I’ve been having episodes of vertigo. My PT did the Epley maneuver and that helped initially. However, the episodes continue.

So, where does this leave me? Good question.

I will have an infusion of Enhertu on December 4. I will have a PET scan the following week followed by a telehealth appointment with my oncologist. My CA 27-29 tumor markers have been rising, so that’s not great. At that appointment we will know if the cancer is quiet or progressing. If it’s quiet, we continue on with Enhertu. If it’s progressing, we change treatment.

In between my Enhertu infusion and scan I will need to travel for work. I don’t mind traveling for work but it’s certainly not fun. It’s harder for me now than before my diagnosis so I try to go only when I really have to.

That’s my cancerland part of life. In the rest of life, I’m still working FT. I’m almost finished with a painting project, I’ve started painting with watercolor, and Glen and I went to the theater to see A Christmas Carol. The girls are off in Vienna now, exploring and having some quality sister time.

I hope that all of you have a meaningful Thanksgiving holiday, whatever that looks like for you.

Onward!