Updates – Page 5 – Life As I Know It

Update – September 12, 2022

The quick update: My scans from August looked “fine” (the cancer is not growing, no progression) and my tumors marker bloodwork from this month showed improvement. Lower numbers are better and mine dropped so that is also encouraging!

So, we celebrate!

I’ve been fortunate to have the opportunity to travel (work and pleasure) and generally feeling good. Generally.

I had to go to Pasadena for work and stayed for the weekend. Maddy flew out to join me and we spent the Labor Day weekend with my BFF. We played tourist on Saturday in the 100+ degree heat.

It’s amazing to reflect back on time – Laura and I met when I went to grad school in Davis, CA. She needed a roommate and I needed a place to stay. That was 1993 – before social media, before cell phones. We had a phone call – I think – and that was it. We were roommates. Little did I know I was gaining a fourth sister!

It’s because of science that I’m able to spend time with her and her daughter. Science that has let me live a pretty “normal” life since this diagnosis of stage IV (metastatic) breast cancer. If this were 2010 or even 2015, the conversation would be very different. I would not be creating these new memories. I’d be recovering from chemo that probably would not work very long.

I sound like a broken record – live your life. Really. Do those things that have meaning and will matter to you a year or 5 years or 10 years from now. It’s way too easy to get caught up in the day to day and slide through life.

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Longer science-y version

I withdrew from the clinical trial. I decided I was not comfortable with not knowing if I was getting medication or the placebo. To be clear, I was getting the standard of care – meaning that I was getting the medication that is normally prescribed.

On Wednesday of last week (5 days ago) I re-started Ibrance, the CDK 4/6 inhibitor that I was on before. This is paired with a drug that blocks estrogen. That drug for me now is a shot called Fluvestrant (or Flaslodex). The shots don’t bother me so much when I get them. I haven’t had much in the way of side effects – or so I thought. I’m thinking this shot is messing with my back.

The past few months I’ve had sporadic pain in my lower back. So much so that it’s hard to move around, even walk. It’s hard to pinpoint what is happening, but I’m now thinking there might be a correlation and this is a side effect. (I actually had an episode this past weekend that lasted 24 hours during which I could barely stand up and walk.)

Fluvestrant is a “Selective Estrogen Receptor Degrader” (a SERD). This means that it messes with the estrogen receptor on cells. You can think of the receptor as the thing the estrogen attaches to. It’s kind of like a docking station. This medicine messes up the docking station so when the estrogen tries to attach to a cell it can’t. My cancer feeds off estrogen – if it can’t connect to the estrogen, it can’t proliferate and grow.

Previously I was on a different drug that prevented the creation of estrogen. The thought is that the cancer figured out what was going on and found a way to work around that to grow. So, I had to switch treatments.

Hopefully this SERD will work and for a long time!

I also continue to get an infusion of a bone strengthener every three months (Zometa). I had my infusion on Wednesday also. My veins tend to roll and are not easy to get an IV into. I thought a new nurse hit the jackpot until the saline started going into my arm. Nothing major, but it was uncomfortable and they had to try a different location for the IV. Certainly not the end of the world but one of those things you deal with living in Cancerland.

Second IV did the trick; red area was the miss

~~~~

Current meds: Ibrance (125 mg), Fluvestrant, Zometa, Lupron

Keep on Swimming – update, June 7, 2022

It was a good run. I’ve been on the same (first) line of treatment for nearly 3 years (July 2019). Alas, the oncologist thinks that the medication is failing me and that we should move to the next line of treatment.

It’s important to note that the medication is failing ME and not the other way around. I’ve done nothing to cause this.

I had a Zoom call with my oncologist this morning because I’m still under the weather from COVID. He went over my bone scan and CT scan results.

Short version – The CT scan showed some mild bone disease worsening and new small fractures on the C7 and T3 of my spine. Given that we’ve had the “should we change treatment?” conversation for ~6 months, he thinks it’s time.

Previous areas of my spine impacted include C7, T9, T10, L4 and S1. Latest scans show more fracture on C7 and also T3.

So, disappointing but not surprising or unexpected. The doctor was very upfront with me from the beginning – we have medication to treat Metastatic Breast Cancer (MBC) but no cure. Eventually all the medication will fail. It’s not a matter of ‘if’, rather ‘when’.

We are finalizing my next line of treatment. The standard of care is a drug called Flaslodex (aka Fulvestrant). I’ll share more about it later.

I have 2 options: (1) Flaslodex alone or (2) randomized clinical trial with Flaslodex and Verzineo (Abemaciclib, another CDK 4/6 similar to Ibrance). I opted for the trial.

A research nurse will call me about the trial and we will sort out details.

Sigh. Knew it was coming. Still a bit of a gut punch. This is the long game though…

I asked about progression free survival (PFS) on Flaslodex. He said his general experience is 1-3 years. He said I did better than average on Ibrance and so that could be an indicator of how well I respond to treatments. Overall, of course, hard to say.

I may have to go a bit without treatment so it flushes out of my system before starting the new one, especially for a trial so that they can be sure the effects are from the new medications.

As of today, still taking first line treatments (even though they are failing me): Ibrance, Anastrazole, Lupron, Zometa

March 16, 2022 -Sneaky Lobular Breast Cancer

Where to start – I had scans on Monday, March 7. The fantastic news is that both my bone scan and CT scan were stable! What does that mean? Based on the imaging it looks like the cancer is quiet in my skeleton and it does not appear to have spread elsewhere. Yay! The oncologist uses the scans as the measure of how well the medication is working so – we stay the course. Same medication, go back monthly for checks. Scans again in 3 months.

Every month I also get blood drawn for a tumor marker test (CA 27-29). The blood tests may or may not be reliable as an indicator of cancer activity. My oncologist orders this test but doesn’t make treatment decisions based on it alone.

A CA 27-29 value of under 38 means no active cancer. At diagnosis I was 122. As I’ve mentioned previously, my numbers dropped to a low of 42 in February of 2020 and have been rising steadily since then. This past month it jumped a lot. The most it ever had. I’m not going to lie, it freaked me out. That number is now at 185. (Note, numbers can vary wildly, I know some MBC patients with values around 3,000.)

Why worry about this if the data might not be reliable?

Well, I have invasive lobular breast cancer. The cancer is missing an enzyme and so instead of forming in a mass, it forms in a string. This means that lobular breast cancer doesn’t generally show up on scans.

So, is the tumor marker rising because it’s just not reliable for me? Or is it rising because the lobular cancer is active but just not visible on scans?

🤷‍♀️

We just simply don’t know. Lobular breast cancer is a very distinct subtype and also very understudied. As a result, it is treated just like the more common ductal cancer.

In the meantime, I continue to work, walk and spend a lot of time with the family. We took a few days to go up to the mountains to ski with family and it was fantastic to be able to go do that.

Take care of yourselves. Get vaccinated and boosted and really live today!

The crew at Copper Mountain ski resort. It was gorgeous weather!

~~~~~~~~~

First line of treatment. Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions.

January 13, 2022

Hi everyone –

I hope 2022 is everything you hoped 2021 was going to be and more. For me, 2022 is off to a better start that expected. I’ll take it!

I had scans last week (bone scan and CT scan). I met with my oncologist earlier this week.

Short version: We stay the course. I’m staying on the same treatment for the moment.

While my blood work (tumor markers) jumped quite a bit in December and I had pain in my right ribs, my CT scan came back clear. My bone scan was largely not changed.

Also a win… my cancer center got a new CT/PET imaging machine and it’s sophisticated enough that I do NOT need to drink barium before the scan. I cannot even tell you how excited I was to learn this.

Overall, I’m still feeling decent. Last week I actually did 2 runs on the ski slopes at Winter Park! Yay me.

In the lift line at Winter Park Ski Resort with (L to R) Glen, Rob, Maddy, Paul and Evelyn.

Longer version:

The CT scan checks for cancer in the soft tissue (lungs, liver, abdomen). In October you may recall there were two items noted by the radiologists. One was enlarged lymph nodes on the left side. Those are gone/normal. We suspected it was a result of my COVID booster and we were probably right. The second was a nodule in my right lung (which are apparently common for everyone). There was no mention of it on the report. Yay!

The bone scan checks the status of the cancer in my bones. The cancer had migrated to my spine, pelvis/hips, shoulders and ribs. My imaging report was largely stable. They noticed “increased uptake” in my hip, where I already knew the cancer had traveled to.

What does this mean?

Unclear. It might mean progression. Might not. ….maddening right?

So, I was given the option of changing to the next line of treatment or staying the course. Glen says (and I agree) we are playing the long game so we stay the course.

The oncologist says this is a gray area. We could change treatments because maybe there is progression. The tumor markers make it look like progression (but tumor markers can be unreliable), but the scans don’t show any progression (but my kind of breast cancer – lobular breast cancer – doesn’t always show up on imaging well). It’s complicated.

I will have scans again in 2 months.

So, for now I continue on my first line of treatment (below). I am on cycle 33 of treatment (cycles are 28 days). This is my 30th calendar month of treatment. It’s hard for me to comprehend that my diagnosis was well over 2 years ago.

Life changes on a dime. We have no control over it. We saw this recently with the fires in Boulder and over 1,000 homes lost and families displaced and losing everything.

It’s hard not to take life for granted when things are going well. Believe me I know. I largely had 50 years of it. But really, we are only guaranteed today. Make the most of it.

~~~~~~~~

First line of treatment. Current medications: Ibrance, Anastrazole, Lupron and quarterly Zometa infusions. CT and bone scans again in March.

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.

~~~~~~~~

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

Fall update – November 9, 2021

Most days, my living with stage 4 breast cancer is probably very similar to you. Wake up, enjoy coffee, scroll phone, think about what’s coming up. Lately that’s meant planning for Maddy’s 15th (golden! 15 on 11/15) birthday, helping Evelyn with college apps, planning meals, and sneaking in walks with Glen.

I’m grateful that my life with MBC as been so “normal”. It’s easy to get caught up in the normalcy of life – and then you have a day like today where I’m jolted back to reality.

Short version: My bone scan was stable compared to June (great). My CT scan shows 2 areas of “interest” (not great, but not necessarily bad). At this time they are not actionable so I’ll continue the same treatment regimen and we will repeat scans in early 2022.

Longer version: I had a bone scan in early October. This procedure images my entire skeleton to look for areas that are damaged by cancer or healing due to medication. It’s an inexact science with the radiologist looking to see how much uptake there was of the tiny amounts of radioactive materials (tracers) that are injected into me hours before. Areas of the body where cells and tissues are repairing themselves most actively take up the largest amounts of tracer. My scan from October looked the same as the one from June (where they thought there might be progression). The “no change” message is one we want to hear! The breast cancer cells in the bones can compromise the strength of the bone and cause other problems, largely it’s manageable.

I had a CT scan in late October. The CT scan goes from my neck to my lower abdomen. The purpose is to look for breast cancer cells that may have migrated to the soft tissue. Cancer in the soft tissue is more worrisome than in the bones.

I had to go to a different location to get my scan and I think a different radiologist read the imaging. My oncologist noted that this radiologist is very thorough and tends to be “conservative” in what is reported – meaning everything that shows up is documented.

My report listed 2 areas of note and things that we will monitor. No action at this point. We will compare the next scan in early 2022 to see if these 2 areas are problematic or not.

The first is a nodule on the upper lobe of my right lung. It’s small, 6mm in size. These nodules can pop up all the time. My oncologist said it’s too small to biopsy and wouldn’t show up on a PET scan. These type of nodules apparently are the most common incidental finding on scans. There is no way to tell yet if this is cancer-related. We will need to watch to see if others pop up or if this one gets bigger – or if it goes away.

The second is an enlarged lymph node on left side / arm. It’s enlarged but within the “normal” limit (8×12 mm). This type of thing waxes and wanes normally. Could be related to an infection, could be cancer, could be nothing. It’s something to watch.

What to make of all this? Well, it is a reminder that while everyday life seems normal for me, it’s really not a normal life. I hope that as you go about your day and encounter others, remember that you have no idea what might be happening in that person’s life. Be kind. Be thoughtful. Live each day to the fullest.

p.s. Glen and I are making the most of each day. Last week we splurged and saw one of our favorite artists (Sting) in concert. Fortunately, they required full vaccination and we made masks part of our stylish outfits! (And I’m guessing no one who saw us would have imagined what my health situation is!)

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.

July 29, 2021 Update

Hi everyone –

I hope you are all healthy and enjoying summer! We are all fully vaccinated and it seems as if time is passing even faster than before.

I write with a brief update here. I’ll be writing again soon with links to more information.

I had scans at the end of June. It is looking like (stable) Mable is a fickle friend. The radiologist indicated “mild progression” on my bone scan (although interpretation is a bit of an art form). My CT scan was clear so there is no cancer apparent in any internal organs. It remains only in my bones as far as we can tell.

My tumor marker in my bloodwork jumped a lot last month. The combination of the big increase in tumor marker coupled with my messy bone scan means that there is likely progression. I am exploring with the oncologist what the next line of treatment would be. I am waiting on new tumor marker blood work results from my appointment earlier this week. If the values jump again, we will move to a second “line of treatment”. If the blood work numbers stay the same or drop, we stay the course.

A “line of treatment” is basically the set of medications taken to keep the cancer from progressing and growing. We know that at some point all medication stops working. The goal is to stay on each line of treatment for as long as possible. There are a finite number of treatment lines.

I have a lot to be grateful for. I celebrated another birthday at the end of June and in August Glen and I will celebrate our 20th wedding anniversary. We spent time this summer as a family in Las Vegas, Steamboat Springs and New England.

I hope you will celebrate all the milestones in your life, even if they don’t seem particularly big. Soak up every day. More soon.

Much love,

April 30, 2021 Update

Dear Friends and Family,

Time marches on. I hope you all have gotten your COVID vaccine, or have a plan to get one. Even if you don’t think you are at risk, by getting the vaccine it will reduce the ability for variants to form, thereby protecting everyone.

I’ve had two regular visits to the cancer center since I last wrote. All status quo which is wonderful.

I don’t have much to share in the way of an update on my cancer situation so I’ll wish you all a happy spring.

March 4, 2021

It’s been a wild ride this past 51 weeks. I hope you are all doing as well as possible and are safe and healthy. It’s hard to believe COVID has been with us almost a year.

I had scans 2 days ago. A bone scan and CT scan with contrast. There was no change in the scans meaning that the cancer is stable. No progression. Status Quo. As I’ve said before this is the best possible news we can have. This means that the medication I’m taking has stopped the cancer from replicating.

The tension in our house understandably becomes high during this week of scans. When Evelyn heard I had scans scheduled her reaction was – again? Didn’t you just have them. Yes, yes, I did. But three months have passed and so here we are again.

Normally I have the scans ~2 days before the appointment with my oncologist. This gives the radiologist time to read the scans and write the report, but not too much time for me to fret over the results. With electronic medical systems I can see the scan reports (after they are approved for my viewing). Normally both the bone and CT scan reports come through within a few hours of each other. When I go to open them my hands literally shake. In December I couldn’t even open them and read them I was so nervous. Glen had to do it. Anyway… this month the bone scan came in yesterday but no CT scan. I checked early evening, no CT report. My mind immediately went to places it shouldn’t – the report wasn’t shared because it showed progression (why can’t our minds go down a ‘good’ rabbit hole?). I checked again this morning (after only ~4 hours sleep). No report. I checked right before I left for the cancer center. No report. All day I prepared myself for bad news. Then, Glen texted me when I was in the waiting room and said the report just came through my electronic file and it was stable. I could feel the tension drain from my body.

One of the more interesting aspects of dealing with this uncertainty is that I otherwise go through the day just like anyone else would. I spent the early morning texting neighbors looking for sand for Evelyn’s engineering project. I went on a walk with Glen before 3 hours of Zoom meetings. I talked with colleagues around the state and across the country about all the work related things that have to get done. I’m grateful for all of that because it allows me to push the cancer to the back of my mind. …but it’s always there.

COVID Vaccine! As an additional bonus I managed to get a COVID vaccine today! A Johnson & Johnson shot so I don’t need a second shot. “One and Done.”

I usually see the same techs when I get my scans and so we chat a lot during the process. One of the techs shared with me how to be available for extra doses the vaccine clinic might have at the end of the day. I went Tuesday but no luck. I went again today and they were hedging. In talking to the clinic manager he said they might have a few – he asked how old I was. In Colorado we are moving tomorrow to the phase where 50+ yr old who have two conditions can get vaccinated. I only have one. I said “51 , but I have stage 4 cancer.” I saw his face change expression. He asked me to have a seat in the waiting area and 10 minutes later he came by to get me. He checked me in himself and told me I was getting one of the Johnson & Johnson shots. Today was the first day they were distributing them. I got the shot and waited 15 minutes and was on my way.

Fortunately, my body handles vaccines and all kinds of medications without issue. I’m grateful for that, very few side effects at all.

Bonus vaccine on a good news scan result day!

Glen will get vaccinated at the end of the month and Evelyn will be eligible with the general Colorado population – hopefully by May. Maddy wil have to wait since she is 14. The vaccines are safe and effective – we will still be wearing masks in public and limiting our activities in the short term. Let’s all hope we can get wide scale transmission and mutations under control so we can figure out the new normal!