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.
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.
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.
Early morning sun on one of my neighborhood walks.
Life As I Know It 