charlevo

How Long to Ride this Treatment Train? 🚂

April 6, 2025

Hi friends and family – I hope spring has sprung in your area and you’ve been able to enjoy some time outside!

I write to share the latest status of my life with MBC and treatment. On March 31 I had treatment #20 of Enhertu! Yippee! Enhertu is an anti-body drug conjugate (ADC) given intravenously every three weeks. I do not have a port for it. On days I receive treatment I’m at the cancer center anywhere from 3-5 hours.

My oncologist considers three things when determining if we stay on the current treatment or change.

How do I feel?
What does imaging show?
What are my tumor markers (blood work) showing?

Fortunately, I feel quite good. I am still working FT. I’m walking daily. I’m doing all the things I want to do. So, all good here.

Imaging. Earlier in March I had a PET scan to see if the cancer is active. The imaging report stated that there was increased activity in several areas of my spine. My scan in December also showed a small increase in activity. So, not the best result.

Tumor Markers. My tumor markers (CA 27-29) have been steadily rising, not great. Ideally we want the number to be under 40. As you can see from the chart here, they are above that and trending upward.

So, what to do? 2 out of the 3 indicators are pointing to progression. My oncologist gave me the option to change medication now or stay on Enhertu. He said it is the “devil you know vs. the devil you don’t know.” After some discussion we agreed that if my tumor marker got into the 350-range we’d change meds.

Keep in mind that when we had that conversation I didn’t have my most recent tumor marker number. Clearly, it has jumped a lot in the past 3 weeks.

So, what next?

As long as I’m still feeling fine I will have my next appointments and treatment on April 12. However, it remains to be seen if I’ll have Enhertu or the next medication we have lined up (also IV chemo).

As you know, there are limited treatment options so we aim to stay on them as long as possible. On the other hand, we don’t want to stay on a treatment that is not working. We want to find something new that will quiet the cancer.

I leave you with a few photos from some recent travels. More soon.

Onward!

Quick March Update ☘️

March 18, 2025

Wow, I realized it’s been a hot minute (actually 2 months) since I shared an update on my health. You can assume that no news is good news!

I’ve been busy life-ing. I’ve been focused on improving my movement. I haven’t used a cane since October. I’m up to walking an hour at a time up to 3mph. I have started some weight training at home, basically trying to get back into shape.

All this to say, I’m feeling fine. I still have continual pain medication and other meds to deal with side effects. Other than some fatigue I’ve been feeling pretty good.

I’m still getting IV chemo (Enhertu) every three weeks. I’ve been on this medication since February 1 of last year. I’ve been grateful to have tolerated it so well.

There are hints though that it might not be working so well any longer. My scans in December were “fuzzy” and I just had another PET scan this morning so I will learn soon if the cancer is quiet or progressing. My bloodwork tumor markers have been rising pretty steadily (bad) so that is a concern.

I next see my oncologist at the end of this month and we will determine then if I need to change meds or not. As you all know, it’s best to change the medication if it is not keeping the cancer quiet. There are a finite number of medications though so the goal is to stay on each one as long as possible.

Our family is headed out on a little holiday later this week to celebrate life. Life is short! Go do “all the things” – even if it doesn’t seem like the best timing.

Onward!

Please help end restrictions on National Institute of Health ❤️‍🩹

Hi everyone –

It’s been an interesting week, regardless of who you are and what you support. I’m writing because one of the Executive Orders this week puts a freeze on communications from many Federal agencies including Health and Human Services (HHS) and the National Institute of Health (NIH).

This is a serious situation as it is already putting cancer research at risk. I work closely with a breast cancer researcher at the University of Colorado (Dr. Matt Sikora) who conducts basic research through grants from NIH. Based on communications he received, it looks like his research lab may lose funding. This funding supports the basic cancer research that leads to new treatments. We all know how I feel about new treatments!

Well, that is a lot. What can I do as one individual?

I ask that you take 10-15 minutes to send an email to your elected members of Congress (you have 2 state Senators and 1 Representative). Believe it or not, staffers count the number of communications they get from constituents on a particular topic. While you might get a form letter response, don’t get discouraged. They will count your email! It will make a difference.

To help you, Dr. Sikora has drafted a sample email and provided links to find contact info for your elected reps as well as a link to where you can find the economic impact of cancer research in your state.

I’m happy to help anyone if you need it. Thanks for your consideration. Cancer has long been a non-partisan issue and should stay that way.

Onward!

Sample email text (you need to change things in bold)

Dear [congressperson]:

I am writing due to grave concerns with the freezing of communications at Federal agencies. Specifically, I am writing regarding HHS and the National Institutes of Health, including the indefinite suspension of council review meetings, review study sections, and travel. Suspension of these meetings and review sections jeopardizes biomedical research funding nationwide.

Currently, our state of Colorado receives nearly $600 million in funding for biomedical research from NIH, supporting over 7,000 highly skilled jobs and driving over $1.5 billion in economic activity. As a concerned constituent living in [Denver], and as a [patient living with cancer/research advocate/caregiver/etc], I urge you to make sure that money that has been allocated for NIH extramural funding, including all training and workforce development grants, remains committed. Loss of this funding would be disastrous for our local economy, and would drive major job loss including in highly trained university biomedical research personnel, including graduate students and postdoctoral trainees that make up the next generation of biomedical researchers.

NIH has always benefitted from robust bipartisan support, and I urge you to continue to commit Federal support to the NIH mission and extramural program, which ensures that our nation remains at the forefront of biomedical research innovations and advances in patient care.

Sincerely,

[name]

–Other state funding data can be found here: https://www.unitedformedicalresearch.org/nih-in-your-state

— Reps by address can be found here: https://www.congress.gov/members/find-your-member

Welcome 2025 🍾

January 1, 2025

As New Year’s Day winds down I write to say hello to all my friends and family, near and far. 2024 was actually a pretty good year for me (unlike 2023) and I’m optimistic this year will be even better.

I had a PET scan in December and the results were “fuzzy.” Well, that is the first word my oncologist used. Let me explain.

He agreed that imaging was not very reliable for me. However, the results showed additional uptake of the contrast in a few areas where I have known cancer (mainly in my spine). On the one hand, other areas seemed quiet and unremarkable. (I want to get a t-shirt that says “I’m unremarkable” – if you know, you know.)

Dr. Andorsky said the most important thing is how I’m feeling. I feel great! Really, I am so grateful for my new hip and my fentanyl patch and other meds, and the fact that I can get up every day and work, exercise, read, paint – you name it. On the other hand, my tumor markers have been slowly rising. They tend to be accurate in terms of whether cancer is active or not.

The other thing to consider is that there are a finite number of treatments so you want to make them last as long as possible. I was prepared to argue to stay on the same treatment and I didn’t need to do that at all! He suggested we stay on Enhertu and revisit in 3 months.

In other news, the tingling in my left arm has gone away. I will attribute it to the blood clot I had under my left collarbone and that by this time it has dissolved and so has my arm tingling.

So, I stay the course which is the best possible outcome. I get an IV infusion of Enhertu every 3 weeks. The cancer center is only 5 miles from my house so I’m able to get there and back quickly. A typical appointment is 3-4 hours for labs, an office visit and then treatment.

The rest of life is going swimmingly. We had a lovely (short) visit with family in Wisconsin. Glen, Maddy and Evelyn have hit the slopes already. Evelyn has been popping home now and again. Maddy has a short break from dance so she is home a bit more as well.

Maddy and I head to Texas to see her grandparents, it will be a short visit – we are looking forward to it regardless. I’ve booked a trip to see my BFF in LA for February and our family is making plans for a few family vacations in 2025.

I hope you are able to approach 2025 with optimism, enthusiasm and peace. I hope to see many of you this year. You are always welcome here – we have plenty of room! Seriously, we’d love to show you around Colorado.

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!

BCAM and Lobular Conference

October 20, 2024

It’s been a busy couple of weeks. The main thing to share is that I feel great and have largely been able to do all the things I’d like to. My main medication (Enhertu) does cause significant nausea and vomiting (yes, that is the reality of MBC) but I have some medication that largely keeps it at bay.

My recovery from the hip replacement is going very well. All restrictions are lifted and I’m working with my PT to get more flexible as well as gain strength and endurance while walking.

October is Breast Cancer Action (Awareness) Month. This year hit differently for me and I can’t pinpoint it. It’s been hard. I did update the blog pages to include my favorite organizations for supporting breast cancer. You can see it here: Organizations to Support. If you are inclined to share some of your hard earned money to breast cancer research you are welcome to donate to my efforts to support METAvivor on this page.

Last month Maddy and I went to Belgium to attend the International Lobular Breast Cancer Symposium. In addition to enjoying the city of Leuven, I learned a lot about the state of research of lobular breast cancer. I have a short write up of what I learned at the end of this post.

Going back to the month of October and breast cancer – please “Think before you Pink” and know where your money is going. Awareness will not help those of us being treated for cancer. Ask questions, if they can’t tell you where the money is going it’s probably not a good investment.

I have treatment again this coming Wednesday. I’m usually at the cancer center for ~4 hours total including office visits, labs and treatment. I use the time to keep up with work but also read – or nap!

Take care of yourselves and your loved ones and enjoy fall.

Onward!

Here is the summary of my experience at the Symposium:

The ILC Symposium, held in Leuven Belgium, was attended by clinicians, researchers, and patient advocates. I attended the 3-day event as a patient advocate. There were just under 190 people in attendance. There are three main points I took away from the Symposium. Imaging for ILC is not very good and needs a lot of improvement. There are new opportunities for understanding an individual patient’s ILC/disease using circulating tumor cell technology. There are many people passionate about ILC and working to move the needle both in treatment and awareness. I found the opportunity to network with other patient advocates to be very good on Monday. We traveled to the university hospital and the time together on the bus allowed for very informal conversations. On the way back from the hospital we discussed what we saw and how the treatment there differs from the U.S. I found the lunch period another good time to network. It was rather difficult though for me personally to manage lunch because I have mobility issues and a cane and there were no tables to sit at. Because of this I ended up sitting elsewhere initially during lunch and then working to join conversations after.

I attended a breakout session devoted to “Imaging primary and metastatic ILC.” Breakout sessions ran concurrently and attendees could self-select which they wanted to join. There were approximately thirty attendees in this breakout session. The overall message was that imaging needs to be improved to be able to diagnose and monitor lobular breast cancer. It was interesting to hear from multiple people on the panel that there is also a shortage of radiologists, causing delays for patients. Patient concerns were shared with researchers and clinicians and among the top concerns were access to imaging, exposure to radiation, contrast exposure and difficulty with IV placement.

The second session I’ll summarize was focused on Tumor Microenvironment, specifically in Metastatic ILC. Here there was a presentation about circulating tumor cells (liquid biopsies) and how that may be a future way to monitor metastatic progression. There needs to be more research and clinical trials into liquid biopsies in various biofluids (beyond blood). This is an area that really needs more focus. Also discussed in this session was to promote research on misdiagnosis and delayed diagnosis in ILC as well as addressing patient-identified concerns through targeted research. I found those two discussions very interesting, and somewhat frustrating. It is clear we have a long way to go when it comes to diagnosing and treating metastatic ILC.

I’ve already had the opportunity to share what I’ve learned. I attended a metastatic breast cancer event the week after the Symposium and shared with other patient advocates what I learned. In addition, I’m the moderator for two facebook groups (one focused on lobular bc) and I shared some information already and will share more in the coming weeks. I also posted on social media during the Symposium, reaching several hundred followers. My hope is not only to educate but to prompt others to become ILC advocates in the future.

All Systems “Go”🚦

September 19, 2024

Hello friends and family! Welcome to fall (almost). The nights are getting cooler here and I’ve seen photos from others that the aspens are starting to change color in the mountains.

I write with good news. My PET scan of earlier this week shows that I’m stable. This is fantastic; it means that the cancer is not growing or spreading. The caveat is that lobular breast cancer sometimes doesn’t show up well on imaging. However, my blood tumor marker number dropped as well! The CA 27-29 gives an idea of how active the cancer is. A number of 38 or lower means the cancer is inactive. In mid-August it was 109. On September 11 it was 93! That was very welcome news!

The combination of the tumor marker dropping and my scan not showing progression means I can stay on the same treatment. I’m currently getting Enhertu every 3 weeks. I’ve got medications to deal with the side effects, overall I’m tolerating it very well.

I also spoke with my orthopedic surgeon this week. My recovery is going very well and he wished me a good time on my upcoming trip. He did mention several times how bad of shape my hip was in. I’m feeling grateful that I no longer have pain and hopefully I will be able to walk unaided soon. I still have some swelling and it’s hard getting used to walking since I’ve been using a cane for 2 years.

Tomorrow Maddy and I leave for Belgium. We are attending the International Lobular Breast Cancer Symposium! I received a travel grant from the Lobular Breast Cancer Association for which I am very grateful.

The symposium is 3 days long and the first day is focused on patient advocates. Maddy will come with me that day. The other 2 days are more research focused. We are excited to go and learn where research is headed for lobular breast cancer. My oncologist was not familiar with this conference and asked me to brief him on what I know. I’m more than happy to do that!

Not gonna lie – we are happy to go to Belgium as well. We should have one day where we can sight see. We will be in the city of Leuven which is east of Brussels. Watch for photos in the next blog post.

Life is good, right now for me life is great. I’m going to take it all in while also making sure I rest and don’t overdo it. Maddy may need to help me with that.

Onward!

My shiny new hip

September 7, 2024

I’m happy to share that my total hip replacement was a success! I had the surgery on Tuesday and was home Wednesday afternoon. My first home physical therapy session was Friday and he cleared me to walk the cul-de-sac. All the pre-habilitation has paid off!

Thank you to everyone who has sent well wishes and flowers and text messages. They are very much appreciated and each one brightens my day.

So, it turns out that my right leg was 1.5 centimeters shorter than my left leg. Over time, with the cancer eating away at my hip, the socket flattened out. The top of the femur also flattened out. It was months in the making so I didn’t necessarily notice the leg difference. It feels weird now to have both the same length – the right feels longer than the left.

He put a ceramic socket in and attached it to the cement/hardware that he put in a couple of years ago. My hip is not strong enough to have the socket attached to the hip bone, like in a normal hip replacement.

The top of the femoral head is metal (titanium I think). When he was putting it in my femur cracked (again, weak bones) and so he had to wrap some wire around it, kind of like a wine barrel. Overall he said the procedure was good and doesn’t expect any kind of complications with the healing.

Ann came out and was my caregiver for which I am extremely grateful. Maddy took the day from school to come to Denver and wait with Ann during the surgery.

The weather has been good and so I’m looking forward to walking outside. My PT comes again on Monday and I’ll be looking to walk longer. The cat is happy that I’m spending a lot of time in the recliner! On Monday I’ll get back to working, probably from my recliner!

I’ll have a check up in 2 or 3 weeks. I’m still planning to go to Belgium with Maddy for a breast cancer symposium later in September. The work must go on!

I also have a PET scan mid-September to see if the cancer is stable or growing. Keep those fingers crossed! 🤞

Onward!

Toward a New Hip

August 25, 2024

Happy end of summer everyone. It’s been a good one for me all things considered. I had some work travel and also some fun personal travel. I was in Wisconsin with Evelyn and Maddy to visit family and shortly after that we took a family vacation to Kauai, Hawaii.

The Nepali coast. You can only see this area by foot, boat or aircraft

Kauai was beautiful as you might expect, it is called the Garden Island! We had a grand time. I was not able to do all the things they did with hiking and surfing. I did mange to read two books and get through a full season of a Netflix series. Those are things that an are tough to do in daily life.

My cancer is still here of course, just hanging out. I had a PET scan in July and it was a bit “brighter” than the previous scan. What does that mean? Could mean that the bones were healing (growth) or it could mean that the cancer is growing. Confusing? Absolutely!

My tumor marker numbers (taken via blood work) have been pretty reliable. The higher the number the more active the cancer. Over summer, they had been creeping upward a bit. But….the most recent blood work saw them drop back down.

So, my oncologist decided we would repeat the scan in 2 months instead of 3. I am scheduled for a PET scan mid-September. After that we will determine if we should switch medication (progression) or stay the course (stable). We talked about what is next….a different kind of chemo. There is the possibility of getting into a clinical trial which I will try to do. More on that later when we get to that point. It is good to have options. As I’ve mentioned many times before, there are limited lines of treatment. Once I run through them all, then that is it. So, we want as many options as possible. Adding in clinical trials is a way to increase the number of treatment lines AND help advance scientific research.

In the meantime, I have this fracture starting in my acetabulum (extending from the socket of my hip) extending upward into my hip. The femur connects with the fracture when I step, causing a fair amount of pain and discomfort. I continue to walk with a cane to relieve the pressure. I actually wore out my first cane and had to buy another one!

Tuesday, September 3 (the day after Labor Day) I will have a full hip replacement. I’ll stay in the hospital for 2 nights and then recover at home. Glen has some international work travel so Ann has kindly agreed to come out and help me. I’ve been told by numerous people that recovery is not difficult. I’ve been working with my physical therapist on some pre-habilitation to make sure I’m in the best possible place. In addition to the PT exercises I continue to walk daily. I’m up to 8000 steps a day which I think is pretty good.

I did learn what it means to have a full hip replacement. If you are squeamish you might want to stop reading here!

They cut off the top of your femur and replace it with an artificial top. It could be metal or ceramic or plastic. Your bone is hollow and so they basically hammer the artificial femur top into your bone so it stays. They also put something in where the socket is. I’m not positive how that will be attached but likely with special cement. Apparently the material of the femur and the new socket are not the same material, it is rare for a surgeon to use a metal-on-metal replacement.

This image shows the various parts and how they fit together.

This image is pretty self-explanatory. The material for the socket and femur head will be TBD. My surgeon said he will be doing a posterior approach which might take a tad bit longer to recover from.

I am cautiously optimistic that this will go smoothly and I will be up and about in no time. My surgeon has green-lighted me to take an international trip 3 weeks after my surgery so he thinks the same thing apparently!

A few fun photos from summer. Missing here is Maddy’s first day of senior year, visit to Wisconsin, and many walks and lunches with friends.

Onward!

Shades of Gray 🩶

July 26, 2024

Like many things in life, medicine is not black and white. I’m reminded of this every time I have a test or conversation with my medical team.

Earlier in July I had a PET scan. This is one of the primary tools my oncologist uses to determine the status of the cancer. According to the PET, there was increased update / brightness on the image, potentially indicating progression or the cancer being active. However, my blood work (tumor markers) show things as steady, no progression. My tumor markers have been pretty accurate in general.

So, we have conflicting data, which makes decision making challenging.

Given that there are a finite number of treatments, the goal is to stay on each treatment as long as possible. Once you move off a treatment you can’t go back to it. The reason for this is that the cancer has mutated and figured out a way around the treatment so it wouldn’t be effective to go back and take the same medication after you have progression on it.

So, I’m in a situation where one piece of data says potential progression and another piece of data says no progression. What to do?

I will stay on my current treatment (Enhertu) but have another PET scan in 2 months, instead of the typical 3 months. This way we are not waiting too long if there is progression and if there is no progression then we just continue on.

This situation is stressful in spite of my trying not to be too stressed out about things. The uncertainty is hard to deal with.

Working in my favor are 2 upcoming months of lots of exciting things including travel. The best – and only – thing I can do is focus on the here and now and enjoy each day to the fullest. I hope you do the same.