What I want for Christmas + Update December 21, 2021

It’s the holiday season and doesn’t seem like it thanks in part to our warm weather. As our immediate family prepares to celebrate, I’m both happy and filled with anxiety.

I have not been feeling great the past month – more aches than usual and general discomfort (that has not risen to the level of ‘pain’) along with fatigue. My dr. appointment last week shows that the blood test for the CA 27-29 tumor marker (which is an indicator of the amount of circulating breast cancer cells in blood) jumped up 30 points. It’s now higher than when I was diagnosed. (122 at diagnosis (7/2019), lowest value was 42 (2/2020), rising steadily since then, currently at 146. Below 38 means no active breast cancer.)

What does this mean? My oncologist wants to get some scans to confirm. Between the blood work and how I’ve been feeling, I will not be shocked if the conclusion is that this first line of treatment has failed.

As a reminder, once a treatment fails you can’t go back to it. There are a finite number of treatments so I want to stay on each one as long as possible. There is also no guarantee that a particular treatment will work at all.

We knew this was coming. If I know the treatment is not working I’d prefer to get started on a new one with the hope that it knocks down the cancer. My anxiety is coming in mainly because of COVID.

Sadly, a select number of people in the U.S. have made COVID a political issue and some people are thinking that they don’t need to worry about COVID because “they will be fine” even if they get it.

The newest variant, Omicron, is spreading very quickly and has mutated enough that there are breakthrough cases for vaccinated people. And it’s critical to note that vaccinated people who get COVID typically do not get a severe case and do not need to be hospitalized.

If I get COVID between now and my scans, I can’t get my scans. If I get COVID I cannot enter the medical facility to get my scans and that means I can’t confirm what the cancer is doing and move to a new treatment plan if necessary. I cannot explain the high level of anxiety this brings to me.

It also makes me sad, angry and disappointed.

I – and my family – should not have to hide away from society to avoid COVID.

Each time someone is infected with a virus it has the opportunity to mutate. Vaccines don’t cause the mutation. Vaccines reduce a virus’s ability to infect people. This gives the virus less opportunities to mutate.

If everyone would get vaccinated, we would likely see mutations of COVID slow or stop.

The COVID vaccine is safe and effective. It reduces severity of disease. Even if you are not at high risk (e.g., young, healthy) you should get the vaccine to help stop the spread and mutations.

There is a disinformation campaign in the U.S. that is mind boggling. People pushing this misinformation have been vaccinated and many have gotten the COVID booster!

People who have not been vaccinated are more likely to end up in the hospital. Hospitals in Colorado are overwhelmed with unvaccinated patients. Even in Boulder County (73% vaccination rate) the hospitals are near capacity with patients from other parts of the state where there are fewer vaccinated individuals coupled with limited health care options.

Hospitals at capacity are not good for cancer patients or anyone else – think car accident or an older individual who fall and might need hospital care only to find there are no beds available for them to be treated. I know of one cancer patient who needed a port put in so she could more easily take her chemotherapy treatment. It was classified as an “elective” procedure and was de-prioritized due to COVID overwhelming her hospital.

If that’s not enough to convince you of the adverse impact of COVID – we will continue see professional sports games cancelled or postponed because of so many COVID infections! You won’t even have that entertainment as you recover at home from COVID.

Much of this can be avoided. Please, please get vaccinated and encourage others to do the same.

Between now and my scans on January 6, I’m going to hope that anyone I encounter is a thoughtful and caring individual who fully vaccinated.

What I want for Christmas is for everyone to get the (free) COVID-19 vaccine and reduce their risk and mine of serious illness.

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Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in January.

August Update (2021)

August 28, 2021

Hi Friends and Family –

Summer is winding down and things almost feel normal – school is back in session, Glen is on his annual fly fishing trip. I say almost normal because I’m not sure what normal is exactly anymore. I’m guessing many of you feel similarly.

Short version: I shared last month that the radiologist though from the scan images that I may have mild progression. If there is progression, that means the medication is not working and the cancer is growing. Typically that means you move to a new set of medication.

We waited for another month of blood work before making any decisions. Once you leave a line of treatment you cannot go back; you want to stay on a line of treatment for as long as possible.

Last month my blood work looked “ok” so that meant no changes. This month it’s “ok but not great”. I will stay on the same medication though and have scans again in a month or two.

Our normal now includes the stress and anxiety of never knowing if I’m stable or will be searching for a new effective treatment. Not ideal, but better than not having treatment options. So, we march on into fall.

I hope you are all safe, healthy and vaccinated. Please, please get vaccinated if not for yourself for me and others like me – those who are on life saving medication. If we get COVID we may have to stop taking the other medication while recovering. What a terrible choice to have to make.

Miss seeing many of you. Wishing you all a grand end to summer and that our paths can cross – in person – soon.

-Donna

Long version: The CA 27-29 tumor marker is blood work test that gives an indication of the spread of breast cancer. The lower the number the better. Mine dropped immediately after starting my treatment in summer 2019. In February 2020 it was close to “normal” and then has been slowly rising ever since, with a big jump in June – at the same time I had scans.

The increase in the CA 27-29 coupled with the imaging results made my oncologist start thinking about a second line of treatment. There is an opportunity to consider a clinical research trial when you change treatments. These trials are how they test new drugs and they are critical for getting drugs eventually approved. Think COVID vaccine here – before it was approved it went through multiple phases of testing via clinical research trials.

There was the possibility of my participating in a clinical trial as part of my next line of treatment. I met with the clinical trial nurse, got info on the treatment, Glen and I researched it and I also had some blood drawn to see if I would be eligible. From what we could tell, it looked promising. I could only participate if I had a particular mutation. Spoiler alert – I do not have that mutation. So, this trial is not an option for me. If I need to change my treatment we’ll have to go with the “standard of care” or see if there is another trial I might be eligible for.

So, I’m back to just waiting for my next set of scans to see where things are at.