I mentioned briefly that my hip has been bothering me, so much so that I purchased a cane to help me walk.
I can’t walk unassisted, basically. I don’t want to continue to live like this because my quality of life (QOL) is not great.
So, I went to see an orthopedic oncologist in Denver.
I learned that the cancer has compromised my pelvis right exactly where my femur touches it. So, it’s painful whenever there is pressure or force exerted on it.
Dr. Lerman is in Denver and developed a novel approach to helping stabilize the pelvis of people with cancer. Rather than do a full hip replacement, he and Dr. Brown developed a surgical approach that will relieve my pain, take only a couple of hours of surgery, and have minimal recovery time.
I’m very glad that this looks to be an option. At the same time, I’m reminded that while my mind wants to move forward with life and do all the things….my body is riddled with cancer that is dictating everything.
I’m grateful for the access to care that I have. It’s also a struggle mentally and physically.
Thank you all for your support and checking in on me. I post about cancer stuff on this instagram account: @nottodaymbc
October is coming to a close and so is Breast Cancer Action Month.
If the month slipped away from you, do not fret! There is one very simple thing you can do.
Please go to this link and click Take Action. The form will send a message to your elected federal officials (Senators and your Representative) asking them to support two bills I hope Congress will pass. You will need to enter your street address so they can find your elected Representative.
Right now those of us diagnosed with MBC (a terminal illness) have to wait a minimum of 5 months to receive disability assistance through Social Security, and, you have to wait 2 years to qualify for Medicare.
The Metastatic Breast Cancer Access to Care Act (House bill 3183 and Senate bill 1312) would eliminate the 5-month Social Security Disability Waiting Period and the subsequent 24-month Medicare waiting period for individuals with metastatic breast cancer.
The second bill is the Cancer Drug Parity Act (House bill 4385 and Senate bill 3080). In a nutshell, this bill requires insurance plans to cover cancer medications taken at home instead of at a cancer center/hospital. For example, I’m on an oral medication that I take at home – Ibrance. Right now, insurance companies are not required to approve – or pay for – cancer medications that are taken at home.
I know this might seem overwhelming if you are not used to looking at bills and legislation. Please know that many individuals are dedicated to making it easy for us all to participate in our democracy and let our elected officials know what is important.
On a personal note, I see the oncologist later this week. I had scans last week and will learn at my next appointment if the medications are keeping the cancer quiet. More soon.
October is Breast Cancer Awareness (Action) Month.
October 13 is Metastatic Breast Cancer Awareness Day. We get one day.
Metastatic Breast Cancer has it’s own ribbon: green, teal and pink. The green represents renewal, hope and immortality, teal symbolizes healing and spirituality, and pink signifies the metastatic cancer originated in the breast.
Tonight, landmarks across the U.S. will light up in the green, teal, and pink. The #LightUpMBC campaign, by Metavivor, is raising both awareness of and money for research of MBC. You can learn more about the #LightUpMBC campaign here. Find a landmark near you!
MBC does not discriminate. Anyone can get it.
Approximately 30% of early stage breast cancer survivors will have a recurrence as metastatic disease, even after completing successful treatment. I was “successfully” treated for Stage 0 breast cancer in 2009, only to have it return as stage 4 in 2019.
685,000 people a year die from metastatic breast cancer globally. In the U.S. ~42,000 people die annually, that is 115 people every day.
Right now it is estimated that only 22% of U.S. MBC patients live longer than 5 years, and only 11% of live longer than 10 years. (I’m confident this number is now higher and more and more people are living longer due to advances in research and treatment and how the survival number is calculated.)
However, there is NO CURE for MBC.
I will be taking medication for the rest of my life. Eventually the cancer figures out how to outsmart the medication so you have to move to another option. We need more research for both treatment options and something to get us to a cure.
In the late 1970s my dear aunt, Jeanne, died from Metastatic Breast Cancer. She was treated in the 60s, “cured,” with a recurrence that was terminal. Fast forward 40+ years. Still no cure. More people (mostly women, but men also) dying annually from MBC.
On a personal note: yesterday I went back to the cancer center to have bloodwork checked. My immune system has recovered enough to start taking Ibrance again. I’ll have another check in 3 weeks where they will determine if I can stay on the same dose, or need to reduce.
I’ll have scans before that appointment to see if all the medications are working to keep the cancer quiet.
I had an MRI of my back last week to try to figure out why I have intermittent, debilitating pain. No new information. Very frustrating. Fortunately for the moment, my back is feeling better.
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.
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.
Current meds: Ibrance (125 mg), Fluvestrant, Zometa, Lupron
Summer is slipping away, I noticed the air felt different yesterday afternoon during a walk. I’m sitting outside as I write this listening to the soft sound of rain. The monsoon kicked in and we’ve had a lot of wet afternoons and evenings.
Update short version:
I had medical appointments last week.
My CT scan (which is imaging of my chest, abdomen, pelvis) was “stable”. Excellent news! We DO NOT want the cancer to migrate to the soft tissue organs. It’s much more difficult to manage.
My tumor marker blood work rose again (not great, we want lower, not higher). This alone is not evidence of how things are going.
My oncologist is good with the CT scans so we continue onward. The new medication may be working. (I’m nervous and concerned because I have lobular breast cancer which can migrate to the GI track and other places and it does NOT show up on imaging.)
So, onward! More medication, more walking daily, more trying to be intentional. I hope you all are living each day to it’s fullest. You are not guaranteed tomorrow.
If you are on Instagram my MBC account is @nottodaymbc
Longer version. I’m in a clinical trial where I don’t know if I’m getting the extra medication being tested or a placebo. In researching it more, I’m thinking I just want the actual meds. 🙂 They are FDA approved for this use, the trial is to see how effective they area.
I’m a HUGE advocate and proponent for science. You all know that.
This clinical research trial (CRT) is basically taking the “regular” medicine alone vs. taking the “regular” medicine with an “extra” medicine. The phase II trial showed that the “extra” medicine extended the time before a breast cancer patient had progression. (Progression is when the cancer finds a way to grow.) The trial I’m currently enrolled in is to determine how much more time a patient gets before progression.
Like I said, I’m all about science.
But this is personal. This is literally a matter of life and death.
I might be getting the “extra” medicine and then that would be great. I might be getting the placebo and missing out on the benefit of the other meds.
I don’t think I’m willing to risk not getting the “extra” medicine.
If I withdraw from the trial will it set back science? Yes, maybe a little.
Will it give me piece of mind to know I’m getting the actual meds and not the placebo? Yes, for sure.
What if I’m already getting the “extra” meds? I don’t know. Maybe I am, maybe I’m not. There is a 50/50 chance.
I’ve been thinking about all of this a lot; especially since my cancer tumor marker bloodwork is not great. Why are those numbers rising? Is it because they are unreliable or is it because this lobular breast cancer (that doesn’t show up on imaging) is growing in some other area?
So. Much. Uncertainty.
I really thought that science was more concrete than this. This is more like art mixed with science with a dash of uncertainty sprinkled in.
So what to do?
Stay positive – do whatever I can to keep a positive mindset and know that I’m doing all I can to be as healthy as possible.
Be informed – try to read as many scientific articles about this trial and the medication as possible
Cara was here visiting and we went to Colorado Springs for ziplining and whitewater rafting.
Evelyn moves in to the dorms today at the University of Colorado.
Maddy starts her sophomore year of high school on Thursday.
Glen and I celebrated our 21st wedding anniversary last week.
I’m not letting life pass me by and you should not either. Seize the day.
Uncertainty is tough. We all deal with it everyday and it’s stressful. Hopefully we all have coping mechanisms to deal with it.
Uncertainty with health is a different level for me and probably for anyone with a chronic or life threatening situation.
Last month my oncologist and I agreed to change my treatment plan because it seemed like it was not effective any longer. That’s a hard thing to process.
While there are “Standard of Care” treatment plans for metastatic breast cancer (MBC), it’s not as black and white as you might think. There is room for the doctor to try to tailor the treatment to the patient. Whenever there is a change in treatment there is opportunity to enroll in a Clinical Research Trial. Trials are important because it is a key part of the process in how new treatments are discovered and approved.
My treatment is standard of care “plus”. In this CRT I’ve enrolled in (postMONARCH) I may be getting additional medication or a placebo. It’s a blind study so I don’t know which I am getting.
I don’t know if it is working. I won’t know until several months have passed.
I will have scans again in early August. This is much sooner than I had been getting them because the CRT requires CT scans every 8 weeks. (That also is concerning to me.)
This morning I received bloodwork for my CA 27-29 tumor marker. It’s jumped up a lot. Way more than it ever has. I don’t know that it means the medication is not working – it’s too early to tell I think. I am reading that sometimes when you start a treatment the counts can spike (Patient Guide to Tumor Markers).
So. Much. Uncertainty.
How do I deal with it? Good question.
Honor the uncertainty. It’s not helpful to bury my head in the sand and ignore this. It’s not going away so figuring out how to manage my stress about it is important.
Spend time meaningfully. I feel better when I’m doing something. Keeping busy doing things that I value or spending time with people I care about helps.
Trust the Science. The science of medicine continues to advance. Medical practitioners go through extensive training to best treat patients. I also believe there is a mind-body connection so mental health is equally important.
Take care as best as possible. Continue to eat healthy, move as much as I can, sleep. Control those things I can control. (As evidenced in the photos at the end of this post.)
Life is good and it also has terrible elements. Don’t let those bad moments outshine the good.
3 years ago was the summer of 2019. Before COVID-19. Life was normal.
What were you doing that summer? What were your hopes and dreams? Did you plan to reach out to that old friend? Or get in better shape? Clean out that closet? Eat healthier? Maybe you wanted to travel somewhere on your bucket list, did you go?
What have you done in the past three years to make yourself happy? To make the lives of others better? To make the world a better place?
If you are like me, you have ideas in your head of things you want to do. Lots of things. Often, these are things for later, for when the kids are older, or out of the house. For when we are not so busy at work. For when we have more money. For tomorrow.
But life is funny. It has a way of moving forward with, or without us.
It’s easy for us to get into a routine. Routine is good – it gives us structure. It gives us a framework for our daily life.
Routine is also safe. It’s an easy excuse for why we don’t go out of our comfort zone, out on a limb, take a risk. Do something out of the ordinary.
Three years sounds like a long time. If you look back at that summer, it may not seem that long ago. (Yes, ok, COVID made time slow down, I admit that.)
Life slips away from us. Life is all the little moments aggregated together. If we are not careful, we get swept up in the everyday and forget to take a step back and look at the bigger picture.
What if, in the summer of 2019, you were told you had a terminal illness and that the life expectancy was only a few years? Would you have spent the last 1095 days doing what you did?
It’s hard not to take each day for granted. It’s our responsibility to make the most of each day, make the world a better place, and leave this world better than when we entered it.
Well, yesterday I was at the cancer center to start my new treatment. This is the second “line of treatment” for me. As I’ve mentioned before, there is no cure for MBC; there are a number of treatment options, or lines. The goal is to stay on each line of treatment as long as possible.
My first line of treatment was one month shy of 3 years. (Personally I was hoping for at least 5 years!)
My second line of treatment includes a clinical trial. I recently put together a web page about Clinical trials. You can view it here: Treatments & (Clinical) Trials. I don’t have it linked anywhere yet on this blog and will soon.
I have the type of breast cancer that grows in response to estrogen (estrogen receptor+/progesterone receptor+: ER/PR+). So, we try to eliminate the estrogen as much as possible. I was taking an Aromatase Inhibitor (AI) (Anastrazole), however, that seems to not be working any longer.
A standard second line of treatment is Fulvestrant (aka Flaslodex) which is a “SERD” Selective Estrogen Receptor Degrader.
A SERD blocks estrogen in a different way than an AI. Fulvestrant (a SERD) blocks the effects of estrogen on hormone ER/PR+ breast cancer cells by sitting in the estrogen receptors on the cells. If Fluvestrant is in the receptor, estrogen can’t attach to the cancer cell and the cell doesn’t receive estrogen’s signals to grow and multiply. It also changes the shape of the estrogen receptors so they don’t work as well. (breastcancer.org)
Fluvestrant is given by injection into a muscle – the back of my hip (literally a pain in my ass!). I will get 2 shots monthly.
I’m also doing the postMONARCH clinical trial. In addition to the monthly injection of Fluvestrant I am taking an oral medication twice a day. I don’t know if I am getting medication (Verzenio, a CDK 4/6 inhibitor) or a placebo. A clinical trial includes a lot of documentation and paperwork! More on that later.
The study is trying to determine if adding Verzenio to Fluvestrant gives better results: longer progression-free survival (PFS). They are probably going to look at overall survival (OS) as well.
We are leaving for vacation in 2 days. We are all crossing our fingers that I don’t have any significant side-effects or adverse reactions. Hawaii here we come!
Second line of treatment: Fluvestrant shots and clinical trial (Verzenio or Placebo, oral), Zometa infusion, Lupron shots
I don’t have much of a cancer update, sharing just to touch base.
Cancer-wise things have been pretty status quo since March with blood work and I’ve not had any weird new side effects or aches/pains. My tumor marker (CA 27-29) is still much higher than we’d like. The only way to know what is going on is to get scans.
I had scans the end of May. However, I also got COVID right after that. So, I got my scans but could not go for my appointment to get the results. I also could not go for my monthly lab visit and treatment.
I have things rescheduled for next week, when I’m hopefully feeling better.
Glen and I both got our second booster in mid-April, so I’m as current as you can be with vaccinations.
I know some people are pretty indifferent to getting COVID and they feel like it’s just something that we have to deal with and it is an inconvenience. That is largely true for the healthy population.
For those of us with life threatening health conditions, getting COVID impacts our ability to be treated, which can impact overall health and survival.
Each month I get a shot that puts me in menopause. This is important because it shuts down my ovaries and keeps them from producing estrogen. The breast cancer feeds on estrogen. I could not get the shot because of COVID.
I share this not for sympathy or pity or anything like that. I share because COVID is no joke and impacts many people in adverse and very serious ways. Please continue to take it seriously.
Get vaccinated. And boosted.
If you have any symptoms or have been exposed, wear a mask, it’s not the end of the world to cover up for a few days. 🙂
I’ll know more about any health changes later next week and will post an update then.