December 26, 2025 – I hope you are all enjoying the holidays and they are evolving exactly as you need them to.
This has been a busy month for cancer and overall quite good.
Two infusions of Enhertu this month, both uneventful.
An echocardiogram that was unchanged from 4 months ago.
A PET scan that is considered “stable”. I have many cancer lesions in my bones and most were healing, a few got worse.
The radiation on my C1 vertebrae in September appears to have worked. It was much less active on my PET scan.
All the cancer-stuff finished before the holidays so I was able to travel to family and friends.
Overall I’m feeling fine. I had a lot of travel in December and with pacing myself I was able to have successful trips.
I will continue on the same medication until at least March when I’ll get another PET scan to see how things are. In the meantime I plan to make the most of what is left of 2025 and start 2026 with gratitude, enthusiasm, and big plans! I don’t know what exactly those plans are but I’m going to try to do “all the things”.
I hope you are able to embrace the new year and all it might bring. Happy Holidays.
Thanks to Amy and Josh we were able to enjoy the Bronco-Packer game. Yes, those are Packer earrings!
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.
Staffer from Rep. Joe Neguse’s office.Staffer from Senator Bennet’s office.
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.
September was a busy month for me in managing cancer.
Back in June I had a brain MRI, which includes the very top of your spine (cervical). At that time, it looked like there might be an active tumor in part of my C1 vertebrae. I also had a full body PET scan that showed “stable” cancer at the time (mainly my spine has been problematic).
The stable PET scan means that my treatment (Enhertu) is largely working. However, the tumor on my C1 made me nervous. Your C1 is directly at the back of your head at the height of your nose. If anything goes wrong there it can be complicated and in the words of my oncologist “catastrophic” 😳
After discussing with my oncologist in August, we decided to radiate it. It’s not uncommon with metastatic breast cancer (MBC) to consider radiating smaller tumors if everything else is stable or no evidence of disease (NED).
So, I decided to pack this in to September which was already busy.
After another MRI of my cervical spine I met with a radiation oncologist. He wanted to do Stereotactic external Beam Radiation Therapy (SBRT) – a concentrated radiation that would have been 2 sessions.
My insurance company disagreed with my radiation oncologist and wouldn’t cover it.
I could appeal it but that can take weeks and I didn’t want to give the tumor more time to get comfy and grow. So instead, I had to go for 10 sessions over two weeks.
You have to lay perfectly still for radiation so that the beam hits the intended target. At my planning session appointment they created a mask. A mesh of warm plastic was placed over my face and head and molded to my exact shape. The photo of the mask shows me with a big smile – not that I’m super happy to be doing this, I just naturally smile for photos.
A spanking new mold of my face and head.
Then I got out of town. Drove Maddy to Cal Poly and then back home. The next day I jumped on a plane to Providence for work. Glen flew out at the end of the week and we spent the weekend (our first as official “empty nesters”) with my cousin playing tourist.
Beautiful fall weather made a boat tour of light houses on Naragassent Bay just delightful!
We got home late on a Sunday and Monday morning at 9am I had my first radiation treatment.
The photo shows me right after they finished a treatment. The mask mostly feels like a heavy blanket with a lot of holes draped over your head.
The mask is literally snapped to the table. You can’t move your head at all. You can kind of see through the holes and of course you can breathe. The round equipment above my head rotated all the way around the table that I’m lying on.
I had 10 treatments (M-F) over two weeks. Within those 2 weeks I also had my Enhertu infusion and got my flu and COVID boosters.
As soon as I finished radiation I headed back to the east coast, Washington DC this time to advocate on the Hill for funding for cancer research.
It’s been a lot, however, I refuse to let cancer dictate my life. Most of those days I was in bed before 9pm. I’m grateful that my side effects are minimal and I can still do “all the things”.
The side effects of radiation to your head are not pleasant. This week I developed a wicked sore throat to the point that I couldn’t swallow. Food doesn’t taste like anything. My fatigue has been ridiculous.
October is a little more quiet but more travel for work and fun.
I hope you all are living your best life and doing the things that make you happy and matter to you, whatever that might be.
Onward!
Our last family dinner before Maddy left for college.Saying “see you later” to MaddyTouring in Rhode Island – this is the homestead of the painter who did the portrait of George Washington that was the inspiration for the $1 bill
Happy summer my friends. In Colorado we are starting off with a cool, wet one which is great for the a/c bill but less ideal for exploring outside.
Lot’s going on here including medically.
I had some work travel last month and towards the end I started not feeling well, including being light headed. I mentioned this to my oncology nurse 2 days ago during my treatment appointments and she scheduled a brain MRI and echocardiogram. Yes, light headedness triggers the immediate thought of brain metastasis.
Recall from my last post that we’ve found the MRI to be the best imaging for me. The brain MRI captures the head and top part of the spine (cervical). Mixed results: no brain metastasis 🙌 but it did pick up a new lesion on my C1 vertebrae 👎.
The nerves that come out of the C1 impact the sides of your face and head as shown in this nifty diagram (one of my fav diagrams BTW).
The most likely explanation for my light headedness is that the lesion (tumor) is pressing on the nerves. So, my oncologist has ordered another PET/CT to check again. It seems a little insane to keep getting imaging that doesn’t work so well – I guess he wants to confirm or look for other lesions.
My tumor markers did drop the end of last month which is in contradiction to the new tumor.
See how complicated and tricky cancer is?
For now, I’ll get the PET/CT and an echocardiogram and keep doing all the things (eating healthy, moving, relaxing) and we shall see where this takes me.
After my work trip I spent 2 days in Chicago at the American Society for Clinical Oncology (ASCO) where I learned about new treatment lines coming out and connecting with other patient advocates.
The cancer research going on now will result in the drugs being used in the coming years. This is why it is so important to preserve funding for the National Institutes of Health. The presidents budget slashes funding by almost 50%. That means many fewer clinical trials and many fewer drugs in 5 years. No one expects to get cancer. If you get cancer in 5 years you will be wishing the NIH had done more research to help you. Please call your elected federal reps and push for restoring funding to NIH.
On a lighter note – Maddy graduated from high school, Evelyn started a research internship at University Colorado Anschutz Medical Campus and we all head to Las Vegas at the end of the month to support Maddy in her last National Dance Competition.
Onward!
Amir humored me with a selfie in front of the MRI machineMaddy’s pre-professional companyThe ASCO meeting was huge with 50,000 attendeesGrateful Nancy could come for the graduationMy 2 favorite future engineers.
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.
Screenshot
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!
At the pool (Hearst Castle, CA)The crew whale watching (CA)Enhertu treatment. Enhertu has to be mixed on site and then covered with a brown bag to block sunlight.
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!
Cheering on the BroncosEvelyn and Glen skiingMaddy and Grandma SeifertI dropped something off at Ev’s apartment and we snapped a quick selfieWith my MBC Sisters. I went to a conference with 350+ women living with MBC. Such love!
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!
Annual Nutcracker BalletToulouse loved present debris!Selfie with Mom and AnnYou can’t visit Wisconsin in winter without bowling.
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!
Glen and I at A Christmas CarolMy buddy resting with meMaddy turned 18 mid-November
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.
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.
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!
Red Rocks to see Santana. Amazing!We did a private air tour of Kauai which was great except that Maddy got motion sickness. Preseason game of Broncos and Packers. I can always rely on my good friend Amy to get me out and cheering for the Broncos!
Life As I Know It 