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!

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

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

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!

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

Fall update – November 9, 2021

Most days, my living with stage 4 breast cancer is probably very similar to you. Wake up, enjoy coffee, scroll phone, think about what’s coming up. Lately that’s meant planning for Maddy’s 15th (golden! 15 on 11/15) birthday, helping Evelyn with college apps, planning meals, and sneaking in walks with Glen.

I’m grateful that my life with MBC as been so “normal”. It’s easy to get caught up in the normalcy of life – and then you have a day like today where I’m jolted back to reality.

Short version: My bone scan was stable compared to June (great). My CT scan shows 2 areas of “interest” (not great, but not necessarily bad). At this time they are not actionable so I’ll continue the same treatment regimen and we will repeat scans in early 2022.

Longer version: I had a bone scan in early October. This procedure images my entire skeleton to look for areas that are damaged by cancer or healing due to medication. It’s an inexact science with the radiologist looking to see how much uptake there was of the tiny amounts of radioactive materials (tracers) that are injected into me hours before. Areas of the body where cells and tissues are repairing themselves most actively take up the largest amounts of tracer. My scan from October looked the same as the one from June (where they thought there might be progression). The “no change” message is one we want to hear! The breast cancer cells in the bones can compromise the strength of the bone and cause other problems, largely it’s manageable.

I had a CT scan in late October. The CT scan goes from my neck to my lower abdomen. The purpose is to look for breast cancer cells that may have migrated to the soft tissue. Cancer in the soft tissue is more worrisome than in the bones.

I had to go to a different location to get my scan and I think a different radiologist read the imaging. My oncologist noted that this radiologist is very thorough and tends to be “conservative” in what is reported – meaning everything that shows up is documented.

My report listed 2 areas of note and things that we will monitor. No action at this point. We will compare the next scan in early 2022 to see if these 2 areas are problematic or not.

The first is a nodule on the upper lobe of my right lung. It’s small, 6mm in size. These nodules can pop up all the time. My oncologist said it’s too small to biopsy and wouldn’t show up on a PET scan. These type of nodules apparently are the most common incidental finding on scans. There is no way to tell yet if this is cancer-related. We will need to watch to see if others pop up or if this one gets bigger – or if it goes away.

The second is an enlarged lymph node on left side / arm. It’s enlarged but within the “normal” limit (8×12 mm). This type of thing waxes and wanes normally. Could be related to an infection, could be cancer, could be nothing. It’s something to watch.

What to make of all this? Well, it is a reminder that while everyday life seems normal for me, it’s really not a normal life. I hope that as you go about your day and encounter others, remember that you have no idea what might be happening in that person’s life. Be kind. Be thoughtful. Live each day to the fullest.

p.s. Glen and I are making the most of each day. Last week we splurged and saw one of our favorite artists (Sting) in concert. Fortunately, they required full vaccination and we made masks part of our stylish outfits! (And I’m guessing no one who saw us would have imagined what my health situation is!)