IV chemo – Life As I Know It

Metastatic Breast Cancer Awareness Day

October 13, 2025

Today is Metastatic Breast Cancer Awareness Day. We get this one day in breast cancer awareness month to shine a light on MBC.

1 in 3 of women cured of breast cancer
will be diagnosed as stage IV (MBC), which is terminal.

If we cure Stage IV, we cure all breast cancer.

In support of raising awareness for MBC, I went to Washington D.C. last week and participated in the METAvivor Stage IV Stampede and Summit.

The Summit included a day of education about MBC as well as how to advocate for various bills and funding.

Tuesday we marched (with police escort) from our hotel to the Capitol. We had a remembrance on the grass. I am holding the sign on the end, near the last “R”. We spoke the names of those who have died from MBC (and I included my aunt Jeanne Moretti as well as several other friends who have passed).

Policy advocates preparing to visit with Congressional staffers.

We met with staffers of our elected representatives. Staffers were taking meetings even though the House was not in session and the federal government was/is closed.

There were four “asks” that we made. I had fantastic interactions and felt like I was heard. I’ll share here what those asks were – if you feel compelled to share with friends/family or to reach out to your own elected representatives that would mean a lot.

Did you know that if you have MBC and need to stop working there is 5-month waiting period for Social Security Disability Insurance (SSDI) benefits to start? In addition, after that there is a 24-month waiting period before you are eligible for Medicare! I am one of the fortunate people who is living longer with my MBC diagnosis and can still work. Women with different subtypes have a prognosis of 2-3 years. During this time they can’t work and can’t get SSDI or Medicare. House bill 2048 “Metastatic Breast Cancer Access to Care Act” would eliminate the waiting period.
Did you know that where you live impacts how private insurance pays for MBC drugs? Private insurance treats medication received at a cancer center different from medication taken at home. Recall that I was on a pill (Ibrance) for the first 4 years. I live in a state where private insurance is required to pay for this (chemo) regardless of how it is given: intravenous or a pill. House bill 4101 (Cancer Drug Parity Act) would require private insurance to cover oral cancer drugs the same as IV drugs, regardless of what state you live in.
The U.S. is the largest funder in the world of cancer research. The administration’s budget zeroed out some breast cancer research programs and greatly reduced funding for the National Institutes of Health (NIH). Fortunately, Congress likes science – we asked them to provide the NIH with the same funding as last year and restore the breast cancer program in the Dept. of Defense.
Did you know there is a national database of incidence of cancer? It was created in the ‘70s during the Nixon administration. Unfortunately, it has not been updated since then. The Surveillance, Epidemiology and End Results (SEER) database provides information on cancer statistics which is used to inform where research dollars should go. It needs to be updated badly and I asked our reps to support funding for it. SEER help us understand where there is a high burden of cancer. It turns out that not every state is contributing to it. In addition, it does not include any recurrence of cancer. When I was first diagnosed, my information was put into SEER (LCIS and stage 0 DCIS breast cancer). However, there is no mechanism to update my information! According to SEER I was treated in 2009 and all is good with me. As you can see, the number of people with MBC or with any recurrent cancer are not counted which means we have no idea who is living with metastatic disease (unless you were diagnosed with MBC right away, which is only 6% of all MBC diagnoses).

That was a lot! If you are still reading, thank you. If you’d like more information about anything including language to send to your elected representatives, shoot me an email (charlevo@gmail.com).

I have one other cancer event this week and then I will take a break from cancer the rest of this month. I hope you are keeping balance in your life as well.

Onward!

1. Donate to research for MBC via METAvivor.

2. Find your Congressional representatives: House & Senate

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!

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!

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!

Enjoying Summer ☀️

Hello friends and family!

First, a very big thank you to everyone who wished me a happy birthday. It was an incredible month topped off by an open house for the ages. I felt the love. Thank you, thank you!

Second, I don’t have much to report. Yay! My infusions are every three weeks. I got my tumor markers back and they dropped down a little bit so basically I interpret that as holding steady.

I have a PET scan this week. My oncologist uses the scans to look for progression. I’m feeling pretty good about it because I both feel good and I think my tumor markers are reliable. If they had started to rise I’d be more concerned.

I’m mostly just trying to enjoy summer, my favorite season. I had an epic weekend with family here. I wish they could come more often and stay longer.

Evelyn, Glen, Cara, Rob, Ann, Lynn, Paul, Donna, Maddy, and Nancy. A huge thanks to Nancy for the informative t-shirts with facts about MBC. Glen even got flowers in the MBC colors!

I’m getting out for walks in the neighborhood, aided by audio books. I am working on my stamina and also working with my physical therapist on “pre-habilitation” to prepare for my hip replacement on September 3.

We just returned from a holiday weekend in Steamboat Springs – one of our favorite mountain towns.

The base of the ski hill is where we like to stay in summer too!

Whatever you are doing this summer, make the best of it!

Onward!

June 2024 update

June 17, 2024

Here we are in full swing of summer. Flowers are blooming, the sun is shining and I’m enjoying all of it.

I had infusion #7 of Enhertu last week. It was an uneventful appointment which is always good. I received a bunch of pre-medication (anti-nausea meds and steroids), a big old bag of fluids (for extra hydration) and Zometa (a bone strengthener). The Enhertu itself only takes about 30 minutes but with everything else it comes out to around 2.5 hours.

I typically feel quite good the day after an infusion. The fatigue starts to hit 3-4 days later. I try to take it easy those first few days because it’s easy to overdo it.

My activity is mostly waking outside now on the cul-de-sacs of our neighborhood. They provide good stability and I can lengthen or shorten my walk pretty easily. At least easier than if I was doing a big loop around our neighborhood. I’m walking long enough now that I can easily listen to some audiobooks which is nice. I’ve missed that. I’m currently listening to How to Solve Your Own Murder by Kristen Perrin.

Anyway, I’m doing fine overall.

I did meet with the orthopedic oncologist last week as well. He validated my pain pointing out on my CT scan that a part of my hip has cracked and broken off and there is the fracture extending through my acetabulum. My femur hits that area each time I put pressure on my leg.

My right hip is on the left of the image. You can see the femur head is not round like it should be. This is from hitting the actual hip – which it should not be doing. You can also see a triangle in the lower center of the left side. That is a part of the hip that has cracked off.

The very good news is we have a solution! In early September I will get a hip replacement. I am very much looking forward to this. The orthopedic surgeon is very confident this will solve the problem. I’m looking forward to walking without pain. My family is also looking forward to my being more mobile. My situation impacts them as well so we will all be happy once I have a shiny new hip.

Onward!

🎂 Birthday Month 🎉

June 1, 2024

It’s my favorite month of the year – mostly because it’s warm and sunny and summer; also because my birthday is the 26th. This year I’ve decided to celebrate all month, I deserve it! (Heck, we all deserve it!) I will be 55 this year. Next month is my 5 year anniversary of living with Metastatic Breast Cancer (MBC). 5 of 55 years with cancer. That doesn’t count the 6 months I dealt with it back in 2009.

Anyway, yay! The cancer is stable.

I have had 6 infusions of Enhertu and it seems to be keeping the cancer quiet. I’ve noticed that my hair is falling out a bit more, it’s quite thin. I’m also taking a fair number of medications to keep other side effects at bay.

I discovered that the steroid I get as a pre-treatment actually helps with the pain in my hip. So, for the time being I’m taking additional steroids daily to make moving about easier. It’s helped tremendously. My physical therapist says I’ve made great progress over the past month. Here’s to hoping that continues!

I have an appointment mid-month with my orthopedic oncologist to see if he can help with eliminating the hip pain. More on that later.

My CA 27-29 tumor marker is a way we monitor for progression. I get tested via blood that gets sent to the Mayo Clinic in Minnesota, every three weeks when I have my treatment. My numbers are still hovering around 100 which is not great but I’ll take it. If it is below 38 then the cancer is quiet and not active. I’m still doing wonderful overall though so I’m not too disappointed.

I’m still working full time with a very flexible schedule. My remote work makes for lonely days but a few wonderful friends make time to come by for tea or lunch which makes a big difference. Later in the summer we’ll do some traveling as a family. This month will be fun at home.

Knowledge is Power 🧐 💪

May 4, 2024

Hello everyone and happy May! I feel like I can’t pass on saying May the Fourth Be with You, even though I’m not big into Star Wars.

I do feel like this is a good news post. I have information from both a PET/CT scan of my entire body and an MRI scan of my lower back.

I have a fracture in my hip that was not caused by a fall or any kind of trauma. It just developed because my bones are weak. The fracture is right in the ball of the hip joint (the acetabulum) where the femur connects. Every time I stand up the femur pushes on the acetabulum where the fracture is, causing pain.

So, my cranky hip is not progression from cancer. Yay!

My tumor marker numbers look good. Last month was 94, last week it was 102. I’ll take it, it’s much lower than the 800 I had in January! 38 and lower means no active cancer. For now, I’d like lower but will be patient!

All smiles because the cancer is under control, for now!

Now the longer version. Stop reading here if you only wanted the basics.

My main oncologist is calling the orthopedic oncologist that did my hip stabilization procedure back in December 2022 to ask if there might be anything he can do. Still waiting on that.

I had my 5th infusion of Enhertu, which is an IV chemo. At this point my side effects are mild and manageable with a combination of my being kind to myself and medication. I don’t have major hair loss, just some shedding. I have some numbness in my fingers now and again (neuropathy). I get the hiccups a lot. Sometimes so loud and violently that they wake me up; sometimes Glen has to go sleep elsewhere because they just don’t stop. The biggest issue has been nausea and vomiting. I think I have that managed by medications, we shall see.

I am feeling very, very grateful as many people do not tolerate these drugs as well as I have.

Back to my hip. I’ll be mainly working with my physical therapist now to get me stronger and get some cardio going. He explained today that unless we can do something with the hip fracture, I probably need to accept that an assistive walking device, like my cane, is a part of my future.

I’ve got a home exercise plan for weight training and other exercises to improve my balance and all that fun stuff. I need to get cardio into the mix so I’ll start with our home treadmill. Ultimately, I’d like to get to the pool to do some walking and other exercises in a non-stress environment.

My goal is to be able to walk outside on the trails by July. I’ll need more strength and stamina and I’m really excited about working to reach this goal. I’ve really missed getting out of the house.

I’m still on a ton of pain medication, including the fentanyl patch. It helps tremendously and I don’t notice any impairment from it, yet I’ve avoided driving as much as possible. That makes life rather difficult but not impossible.

In non-cancer updates – Evelyn is finishing up her semester exams of her sophomore year at CU Boulder. She will live at home this summer because she got an internship (in mechanical engineering) at a company across the street from our neighborhood!

Maddy is wrapping up Junior year and some IB (International Baccalaureate) testing. She just had her last dance competition of this year, now auditions for next year and the spring recital. If you are local and want to join me at any of her recitals let me know.

Glen is busy with work and enjoying the warmer weather. He’s back to running in the foothills, especially on the weekend. He is currently outside working on the gardens. Glen and Maddy did some campus tours in the LA region earlier this spring.

I’m keeping myself busy with work and working on strengthening the local MBC network that I started. Overall I’m feeling better so it’s been a blessing and a curse that I want to do more and need to not overdo it, which I have a tendency to do.

I’m hoping to make a trip to Wisconsin in the early part of summer and of course would love to connect with many of you. I’ll share plans once they are made.

Be well my friends. Get out there and live every day as if it were your last.

Onward!

Toulouse is officially a lap cat as this is a rare sighting with Glen

April 2024 Update 🌷

April 14, 2024. Hi everyone – just a quick update on things here in cancerland.

This past week I had a PET scan and an infusion of Enhertu (chemotherapy). Both went smoothly, no problems at all. I’ve not seen the PET scan report, but I received a voice mail from my oncologist that things were “stable” meaning the cancer did not look like it was growing. The infusion treatment on Tuesday also went smoothly with no issues. My blood work and tumor marker continues to drop, indicating the medication is doing its job.

I am very grateful for all of this!

I continue to have mobility issues with my right hip. It’s not clear if it is cancer related or not. I’m on a lot of pain medication right now due to my lower back. Next week I’ll reach out to my oncologist and see if we can get an MRI so we have more detailed information.

The impaired mobility is significant. I cannot walk without assistance and my hip flexor is extremely tight. I’m trying to work in some upper body free weights and additional lower body stretching. I’ve not returned to doing outdoor walks, my stability is not great. I may look at longer walks on our home treadmill to get some endurance going.

I hope that signs of spring are apparent where you live. We’ve had some lovely weather here and I hope it continues!

You can follow me on Instagram at @nottodaymbc where I tend to post more daily cancer-related updates. I post to Facebook but not much health-related information. Of course I always welcome a text message or snail mail if you feel like getting in touch.

Enjoy whatever weather Mother Nature throws at you!

Spring and renewed hope 🌷

Hello friends and family. We are well into March and you, like us, are experiencing the crazy weather that happens when Mother Nature is trying to change seasons. After a week of 60 degree temperatures, last week we got close to 17” of snow at our house and snow days from school (even the University closed for a day).

The view from our bedroom window just after the snow ended. We lost the little tree in the center of the photo and some of the larger bush branches by the fence.

Anyway, I’m looking at spring as a time for renewal and new beginnings. I started a new medication in February and it appears to be working based on the blood work. I’m getting IV chemo called Enhertu. It takes about 3 hours to get all the various meds dripped into me. Fortunately I’m not having much in the way of serious side effects: fatigue, some neuropathy in my hands, and gas. So, not great but overall not a big deal.

I’ve talked a lot about the tumor marker CA 27-29. It’s a way to get some data about how well a particular treatment might be working. Oncologists don’t make treatment decisions on tumor marker data alone but it’s a good proxy.

My blood is drawn and sent off to Mayo Clinic in Minnesota for analysis. The results show up in my medical portal a few days later.

A number below 38 indicates no active cancer.

When I was diagnosed in July 2019 my CA 27-29 was 122.

The number had been climbing the past year, yet my scans didn’t indicate any progression.

I peaked at almost 800.

My March number was 130! Yippee!

It’s clear from this chart of my tumor marker numbers that the cancer does not like the Enhertu chemo! Let’s hope that my scans in April confirm this.

A graph of my CA 27-29 tumor marker starting in July 2019 when I was diagnosed. Any value under the red line indicates no active cancer. I started taking Enhertu chemo right at the peak on the right side. The Enhertu seems to be knocking down the cancer activity. The numbers on the x-axis are days since diagnosis

Be well my friends. Onward!