research – 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

Cancer Drugs 💊 and Research 🔬

April 19, 2025

Hello friends and family! A quick update on things cancer-related, as you can expect from this blog!

My hip is fantastic. No pain at all. I’m up to walking around 4 miles a day. I can manage about an hour at a time. So happy about that and grateful for the skill of my orthopedic oncologist Dr. Lerman.

This coming Monday morning I will have treatment #21 of Enhertu. Recall this is a drug called an Anti-body Drug Conjugate (ADC) and is given intravenously every three weeks. Overall this drug has been good to me. It brought me back from the brink of a run-away cancer train early last year. Recently it’s not clear it’s been working so well as I mentioned in this post. Recall also that this drug was approved for my type of breast cancer (Her2-low) only in August 2022 – a full 3 years after I was diagnosed with MBC. I’m hoping for more drug discovery and approval so I can live longer!

I’m grateful that my side effects continue to be minimal. I’m on a blood thinner because it caused a blood clot last fall. I take Olanzapine nightly to control nausea and vomiting. I’m also grateful for the researchers that looked into this particular use of Enhertu. So very grateful!

This brings me to my second update. The future of cancer research in the U.S. is at risk. I know this first hand as a researcher I work with is looking at a loss of funding from NIH for his basic lobular breast cancer research. He shared some of the graphics and information shown here.

This chart shows the trends of NIH grant funding from 2015-2025 (source). As you can see, the amount of funding being distributed is far below previous years. The spring months (Feb-May) is when most federal awards are made based on the budget cycle.

The outlook for the Congressionally Directed Medical Research Programs (CDMRP) show significant cuts to cancer research. The March 14 Continuing Resolution has their budget reduced by 57%. You can see from this chart where some of the cuts were.

You may say, well ok, but there are a lot of other sources of funding for cancer research. There are other countries who will continue research – we don’t need to worry. Not really. As you can see from this chart, the NIH is BY FAR the largest funder of cancer research IN.THE.WORLD! The budget of the NIH is significantly larger than the next largest funder.

Ok, you say – what about foundations? They also support research. Yes, they do. The amount that they spend is a fraction of what the U.S. Federal government spends. In addition, the dollar amounts from foundations tend to be small. The motivation of foundations is to provide seed money to develop a proof of concept. Once the researcher does this they have some preliminary data to seek out a federal research grant to do the main research. The foundations take on the risk that federal funding won’t.

Well, Donna, thanks for giving me such uplifting news. Now I feel sad. Well, I can help you feel better about all of this by – please – contacting your federal elected representatives and urge them to restore funding to the NIH. You can find their contact info here. If you scroll down past the photos you can see a script to follow when you call.

All this being said, I remain cautiously optimistic that Americans will band together and convince our reps to fund cancer research. You never know who will get cancer next and having new treatment options is critical.

Onward!

I encountered this lovely little duck swimming away in the creek on my walk in Lafayette.

Script for federal reps:

Hi, my name is [Name] and I’m a constituent from [Your city].

I’m calling to urge [Name of representative] to oppose the recent devastating cuts to NIH funding and staffing. These cuts are already disrupting crucial research to treat diseases such as cancer [you could also add Alzheimers, diabetes, other diseases that impact you]. Hurting the NIH hurts everyone.

Thank you for your time and consideration.

p.s. If you leave a voicemail be sure to leave your full street address to ensure your call is counted.

p.p.s. – If you are nervous about talking to a person, call in the evening and leave a voice mail. It still counts.

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!

Four years of MBC

In my head July 19, 2019 was the day I got the stage 4 diagnosis. Turns out it was actually July 18. No matter. The 19th was the first full day living with this reality.

It’s been four years. Probably closer to 5 given misdiagnosis.

I’m on my second line of treatment. For that I’m extremely grateful.

Is my life what I thought it would be at 54 years old? Absolutely not. Is my life good? Absolutely!

I’m a planner and have always had a Plan A, Plan B, and Plan C. Never was stage 4 cancer in the plan, but alas, here it is.

Don’t get me wrong, the whole thing sucks. There is no silver lining. There are no lessons learned. I didn’t get some grand awakening that made me appreciate my life more. Me and my family just had to pivot and find a new path forward.

I’m on my second treatment line of medication. That means that I was taking medication that stopped working and had to switch to new meds. Cancer is crafty and can figure how to outsmart the medication.

Fortunately, science is amazing and research is literally life saving.

If you have the means please consider supporting my fundraising for more research into MBC treatments. Even if I am not able to benefit, those who, unfortunately, come after me will.

https://donate.metavivor.org/fundraiser/4523169

Four years + living with metastatic breast cancer. Bleh. Let’s hope for decades more.

Looking for Balance

It’s been a busy couple of weeks. I was at the oncologist this past week. Short version: stay the course for this month. Things look “ok”.

Every 3 months I have a CT scan (neck to pelvis) to check on the cancer and see what it might be doing. The results of my CT scan last Monday show nothing remarkable. This is excellent because it means the cancer has not spread. It’s still just hanging out in my bones.

The oncologist ordered a bone scan before my March appointment. The bone scan literally images the bones, toes to top of the skull.

We are a bit worried about the tumor marker from my blood work. The CA 27-29 tumor marker can give an indication if the cancer is active. My value has been slowly rising and then almost doubled last month. This month it dropped almost as much as it rose last month. What does this mean? Unclear. It’s unusual for me to see these big changes so it’s raised some concerns. Tumor markers are not necessarily sufficient on their own to give a picture of what’s going on. The oncologist won’t use this data alone to make decisions. So, we get a bone scan and re-evaluate next month.

I recently wrote about new treatment options for MBC. I was waiting for blood tests to come back to see if Orserdu might be an option. This newly approved medication only works if an ERS1 mutation as developed. I don’t have the mutation, so this drug will not be an option. If I do need to switch medication, the next option is chemotherapy.

These past few weeks have been difficult. In particular I’ve had chronic pain that is tough to deal with, as some of you know. It’s hard for the pain (and MBC) not to take over my life. So, I’ve been focusing on finding balance.

My guess is you are looking for balance too. So many of us are. Too much focus on any one thing in life is unhealthy and yet it’s easy to get swept up.

Thankfully, the past month I was able to enjoy a dance competition Maddy competed in, found a few new shows to watch while walking on the treadmill, met friends for coffee or lunch, and took a long weekend trip to Wisconsin to see some friends and family.

I keep looking carefully at how to spend my time – finding the right mix of fun, rest, and spending time with people who are important to me. I hope you can do the same.

~~~~

Current treatment:
Ibrance, 125 mg (oral) + Fulvestrant (injection) – Prevents cancer cells from dividing + estrogen blocker
Lupron (injection) – induces menopause
Zometa (infusion) – bone strengthener

Research For The Win

I write today not with an update about me, but about treatments for metastatic (stage 4) breast cancer (MBC).

Within the past week the FDA approved two – yes two! – drugs to be used to treat MBC. This is amazing and gives such hope to so many people with this disease. A third drug had FDA revised approval in 2022 expanding its use with MBC patients.

As I’ve said before, MBC is not curable but it is treatable. This means there are drugs to try to keep the cancer from growing, but eventually they fail. Then you move on to the next drug. Once you run out of drugs you run out of treatment options and the cancer wins.

This is why research is so important! Only through research will we be able to have new drugs developed and hopefully one day find a cure.

The two drugs are Orserdu (Elacestrant) approved January 27, 2023 and Trodelvy (sacituzumab govitecan-hziy) approved February 3, 2023. A third drug has already been a game changer for people I know in treatment. In May 2022, the FDA expanded the uses of Enhertu (Trastuzumab deruxtecan) for use by more MBC patients.

These drugs take many years to get to approval. Most drugs don’t progress far enough through clinical trials to get approved, so this is a big deal to have 3 new options within 6 months!

MBC is not one disease and so not all drugs work with all subtypes of MBC.

Will these three drugs help me? Probably, maybe.

Already we are looking into Orserdu as my next treatment line option. This drug only works well if your cancer has developed a particular mutation (ESR1). The cancer mutates to outsmart the medication. I had blood drawn 2 days ago that is being tested for the mutation.

The other two drugs (Enhertu and Trodelvy) may be options for me a bit later. We shall see.

A HUGE thank you to everyone who shares information about MBC, tells people about my journey and is able to donate to support MBC research.

The national #LightUpMBC fundraising campaign I helped with last fall raised over $500,00 for research and funded 2 scientific research grants specifically focused on MBC. Unfortunately we have to do fund raisers (kind of like a big bake sale) to fund this research because most breast cancer research dollars go to earlier stage.

So again, thank you for being my cheerleaders and for helping me raise awareness of the need for more support for MBC. I appreciate you all.