breast cancer – Life As I Know It

No Different Information

Here we are again. Another month has passed and I’m posting. I thank you all for reading and for your interest. I hope you also learn a tad bit about this hideous disease and share with others.

But it seems like, yes, another month has passed and there is not much to update. In the grand scheme of life, not much has changed for me. (Side note, my recent scans were “fine” and I continue my current medications. Yay!)

Life is busy. There are things to do, places to go, people to see, and dreams to achieve. One day blends into the next with the punctuation of weekends when we can stand down a bit – unless you are retired. (My retired cousin says ‘everyday is Saturday.’)

Seriously, I feel odd sometimes writing these updates because to many of you, there is probably not a lot of new information.

When I first got this diagnosis it was terrifying to me, and also to my friends and family. Here I am 3 years and 8 months later – still alive, still working full-time, still traveling. Still living like many of you.

And yet. I live in 3 month increments. I have no idea if the table will turn and the next set of scans will be the ones that show the cancer has out smarted the medicine. Will this be the month I have to change my medication – and if I do, will it work? What kind of side effects will it have?

So far, I’ve only had to change medication once. That’s pretty f-ing amazing in almost 3.75 years. Hooray for science!

The internal anxiety I have is always present. I’m able to swallow it a lot because work is distracting. My friends allow me think of other things. Being with my family helps me live in the moment.

Today I met with my oncologist. There was a real possibility I would change meds. He said that with the data he has we should stay the course. So, no change in anything. Same meds.

We talked about what is next. I have two options for treatment (Xeloda or Taxol). When that stops working I’ll go to Enhertu. When that stops working I’ll go to whichever of the ones I didn’t chose (Xeloda or Taxol).

There is no cure for this, just treatment. The idea of changing treatment is terrifying – to be honest. Do I show that? No, because I don’t think about it a lot and there is not point in worrying about something out of my hands.

That doesn’t mean that everything is smooth sailing. It’s just not apparent. I have a lot to do, a lot of plans and a lot of new memories to make.

You have that as well. We just don’t often think about the time when we can’t do it, or when we run out of time.

We all run out of time, some of us just know we have less time that others. Very recently someone Glen and I know died from metastatic breast cancer. She and I communicated via email and she was really supportive when I was first diagnosed. She leaves behind a husband and 8 year old son. Her mortality is my mortality and the same for everyone else with this disease.

This being said, I have supreme confidence in science and am looking forward to annoying you all for many years to come with boring posts of non-information. 😃

This was the first outdoor walk, out of our neighborhood that I’ve done since October. My hip is finally starting to really heal.
View from Sandia Peak in Albuquerque. I was there for work.
Glen and I with cousin Dave and Jill. Fantastic (to short) visit. Explored the University. Colorado campus after brunch and before a hike.

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Second line of treatment (since June 2022):

Fulvestrant (injection monthly)
Ibrance (oral daily)
Lupron (injection monthly)
Zometa (infusion quarterly)

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.

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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.

Today I was at the office of my orthopedic oncologist and they had a table of goodies for “Patient Appreciation Week”. What a lovely surprise!

Graduation tears

This morning was my last radiation treatment. The purpose of the radiation is to knock down any cancer that might be lingering in my hip and pelvis. The radiation does not cure my cancer.

Overall the radiation experience has been pretty straightforward. I only had 10 sessions and I haven’t really noticed any side effects. Fortunately, the treatments are quick and I live pretty close to the cancer center so the impact to my daily routine was minimal.

Radiation is done one person at a time and so you don’t interact much with other patients. I did get to know my 2 technicians relatively well. Interestingly, both of them were here on assignment (one from Tennessee and one from the Caribbean). The cancer center does not have enough full time local employees and so they contract health care workers from other parts of the country. This is not a new phenomenon, it’s been happening a lot since COVID not just here but across the country.

Did the radiation help? It’s too early to know. There won’t be a clear, obvious signal. If my cancer become stable again then, yes, it probably helped.

So I’m “done” with radiation. When I arrived, the technicians greeted me with “happy graduation day.” When I finished, the nurse I met with to ‘discharge’ me handed me a certificate of sorts congratulating me on finishing radiation, signed by all the staff. It was a lovely gesture. After I met with her, I cried.

I shed tears not because of the kindness of the radiation staff or for finishing radiation. I cried because I know this is just one small blip on my road of trying to keep this disease under control. I’m not “done” with cancer. I haven’t really graduated to anything. I don’t feel like this venture into radiation is anything more than documenting and checking off a procedure.

I know it’s ok to cry about this. I feel sad knowing the reality of my situation. I let tears fall until I got to my car. I composed myself and drove home. I have things to do today and I’ll tuck this into the back of my mind and get back to living.

Hope you have plans to live big today too.

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See my day-to-day living with MBC on Instagram: @nottodaymbc
Sciency-cancer stuff on Twitter: @dcharlevo

Woah, we’re half way there

Quick check in now that I’ve got 5 of 10 radiation treatments completed (with a music nod for a title to my fellow Gen-Xers).

Fortunately, things are going smoothly. The radiation staff are great. I’m literally in and out. I leave the house at 8:30 am and am back home by 9:15. (Watch me jinx myself for tomorrow!)

I don’t have any notable side effects (at this point). I’m slathering up with lotion and staying hydrated.

They do the same procedure every time so it does go a tiny bit quicker than the first time. On Wednesday I had a check in with the radiation oncologist which went fine.

Also on last Wednesday I had my monthly medical oncology appointment. That didn’t go as well. It was “fine” overall. My neutrophils were low (1.02) and normally they’d let me restart my Ibrance medication with that value but because of the radiation they are holding those meds for a month.

I get 3 shots each month. 2 were in my right hip and it seems like one has hit a nerve so I’m have some really unpleasant side effects with that.

On Friday I learned my tumor markers have almost doubled as well. Why? Could be many reasons. Not really sure.

So, it’s been an eventful few days.

On a fabulous note, I read a book on Saturday (Big Little Lies, recommend!) and Sunday watched both football games. It was a very relaxing weekend.

I’ve not been able to get outside for a good solid walk since late October. The weather is helping me to be less sad about that. It’s very Midwest-like with overcast skies, cold and occasional snow.

Soon the weather will break and I’ll be up and about. Darkest before the dawn!

Be well my friends.

View of the mountains from the cancer center parking lot this morning. You can barely make out some of the foothills. I’m ready for some sunshine!

1 ☢️ down, 9 to go

After a short delay, radiation treatment is on.

I got a call late Monday (yesterday) saying my insurance approved the treatment plan, so in I went today for my first dose.

As my kids would say when they were younger “easy peasy lemon squeezy”. At least this one was. 15 minutes from when I walked in the door to when I left.

Two things stuck out to me.

The first is that it sounded exactly like when you get x-rays of your teeth at the dentist. Except, it lasted for like 20 or 30 seconds. Not gonna lie – that was a little unnerving.

The second was that they radiated the “front” of me and then the machine spun around the table and the radiated the “back”. This tripped me out a little because that radiation was traveling through the table into me. That hit differently. This is some powerful stuff.

Of course I knew this. At the same time, I go through most days with stage 4 cancer compartmentalized, ideally in the back of my mind. This made it come screaming front and center.

Tomorrow my appointment is at 8:45 am. They’ve already closed schools across the front range area due to a winter storm so there is a good chance I won’t make it. Not to worry, I have more appointments in the afternoon for regular oncology check ins and it sounds like they can squeeze me in for radiation in the afternoon. All the appointments are in the same building.

I’ll leave you with this wintery scene. We are expecting anywhere from 4-12” inches by tomorrow mid-morning.

Radiation and tattoos!

Well, I’m entering a new chapter of cancerland: radiation. I have avoided the radiation dance up to this point.

Alas, here we are.

One of the ways they monitor my metastatic breast cancer is through blood work and what they call “tumor markers”. If the tumor marker value is below a certain threshold, no active cancer. If it is above that threshold, “probably” active cancer. My tumor markers have been slowly rising above the threshold for a long time and then rose rapidly recently. My scans did not show any progression so the interpretation of the oncologist was that the cancer was stable.

Maybe not.

My hip/pelvis stabilization surgery last month showed significant “space” in my hip where basically the cancer had eaten away at the bone. That sort of thing does not show up well on imaging. So, the surgery was to shore up the bone, which it did.

The surgeon recommended a round of radiation to my hip to kill off any cancer cells that might be hanging out. For weeks now I’ve been preparing for the radiation therapy. This includes a consultation with a radiation oncologist, a preparatory appointment with a PET scan of the hip and then a simulation appointment where they line up everything in the radiation machine.

I’ve completed all of that.

I’ve learned that there is an entire team of medical professionals that work on my case. The radiation oncologist leads the team. Radiation therapists are experts in operating the machines. Radiation oncology nurses help patients manage side effects and also communicate with the family. The medical physicists work with the radiation oncologist and others to make sure each treatment is tailored properly for each patient. The dosimetrists work with the radiation oncologist and medical physicist to develop the precise treatment plan for each patient including calculating the correct dose of radiation.

No wonder it’s so expensive!

At my first preparation appointment I got a few tattoos! Not as exciting as it might seem.

I have 3 small black dots across my hips that will be used to align the radiation machine using lasers. It’s very common to get these small tattoos when getting radiation. The radiation technician joked that he has done more small black dot tattoos than any tattoo artist in Boulder!

The radiation machine looks like a very large Kitchen Aid mixer! The white draped surface to the right is where the patient lays, the table slides back toward the machine and the round element on the underside of the top is where the radiation comes out.

Now that everything is set up, I’ll have 10 doses of radiation over two weeks. I show up at the same time every day. It’s 15 minutes from when I walk in the building to when I leave. Fortunately the cancer center is only a 10 minute drive from my house.

The only hiccup is one that is not shocking. Insurance.

Cigna called to say that my radiation therapy is still not approved. The first request was for a procedure that did not conform to NCCN (National Comprehensive Cancer Network) guidelines. The radiation oncologist submitted a revised request. This one is still pending. It was pending as of 3:30 pm Friday afternoon. I can’t risk going to my 8:45 am appointment on Monday and not having it covered.

So, we wait.

Likely this will just be a short delay. It probably won’t have an overall impact on my situation. It is worrisome though because if I were in a more urgent situation, it would be frustrating and potentially harmful to delay.

In the meantime I’ll be spending the weekend doing some treadmill walking, playing with the cat, and reading some scientific papers on lobular breast cancer. Wishing you a weekend that is exactly how you want to spend your time.

Stay tuned for the next episode of Cancerland!

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Current medication: (2nd line of treatment) Fulvestrant, Ibrance, Zometa, Lupron

Surgery plan – December 3, 2022

Many people have asked, I finally have a confirmed surgery date of Monday, December 12.

The plan is to have a procedure that should help stabilize my hip and pelvis. It will be done in Denver as out patient surgery and should only take 1-2 hours. I should be home that afternoon. One of my sisters is coming to help me.

I don’t need anything at this point. I don’t know how long the recovery will be; I’ve been told I should be up and about very quickly.

Later next week I have a consultant with a radiation oncologist. I will have some radiation to the hip later in the month just to kill off any pesky cancer cells that might be hanging out.

I appreciate all who have reached out. I hope to catch up with many of you who are local for coffee or a meal.

Thanks everyone!

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Cancer life on instagram @nottodaymbc

My monthly oncology appointment last week was fine. We just keep rolling along. Medications all the same.

Fulvestrant (a SERD that inhibits estrogen from feeding the cancer, 2 shots a month)
Ibrance (A CDK4/6 inhibitor that attacks cancer cells
Lupron (A monthly shot that puts me into menopause)
Zometa (A quarterly infusion that strengthens my bones)

Plan A and Plan B, and C, and… – November 30, 2022

If you know me well, you know that I’ve always got a plan and a backup, and a few more backups beyond that. I gotta say, my current life situation was no where in my planning or remotely on my radar.

This being said, we’re not fortune tellers, so we have to give ourselves a little grace if life doesn’t go as we plan, hope, or desire.

Short update: Had my monthly visit to the cancer center. Pretty routine – awesome blood draws by the lab techs, lovely chats with the Nurse Practitioner and front receptionist, and once the IV was in my infusion was smooth. The second stick for the infusion is always tricky. My one good vein is used for the labs and then they pull in the rock star nursing staff to get a vein the second time.

Anyway, this was a routine check to make sure nothing weird is going on and everything is A-ok.

Perk of a mask is that it keeps my face warm as I exit the cancer center tonight in the cold.

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Longer update: You will recall that with Metastatic Breast Cancer (MBC) there is no cure; only treatments. Once you run through all the treatment lines you run out of options and the cancer wins. So, the goal is to stay on any treatment as long as possible.

There is general guidance for treatments that are based on the subtype of MBC you have. The oncologist and patient talk about the wiggle room in that guidance and make a personalized plan.

Right now it appears that my current treatment line is working (my scans in October were stable). However, it’s always good to be looking forward so we can sort through options and come up with a good plan.

To that end, I got a call earlier today from the Clinical Research Coordinator reaching out with information about a potential clinical research trial that is an option when my current treatment line fails. She gave me paperwork today to read through so I can learn more.

(Fun fact for those of you familiar with the IRB process. The pre-screening informed consent form is 15 pages long. The informed consent for the trial is 30 pages long. A tad bit more detail and information than the ones we fill out for education research!)

I’m somewhat familiar with the particular clinical trial and am eager to learn more. It’s important to note that clinical research trials are not a last resort! There are many that provide standard of care while also investigating new treatments.

I love to have information – and yet – I’m not gonna lie, it was a bit of a gut punch to hear her say ‘when the current treatment fails’. No one wants to think about that, but we have to. Well, I have to. I cannot bury my head in the sand and pretend like the current meds will work forever. I firmly believe knowledge is power and I’d rather be in the power seat with cancer.

One more note – my hip has only gotten crankier. I am hoping to have a procedure done next week (December 5), it’s not confirmed (believe it or not). The not-knowing is frustrating and challenging. I’ll share more once I actually have information.

My Cranky Hip – November 12, 2022

I mentioned briefly that my hip has been bothering me, so much so that I purchased a cane to help me walk.

Woman holding up a black cane. — This is my “fancy” cane. Lovely fleur-de-lis in white on black. It’s collapsible and comes with a bag so I can fold it up and carry it in my handbag.

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.

It looks like I could have the procedure done after the Thanksgiving holiday. I don’t have any more details at this point, other than to share a short video of Dr. Lerman talking about what they do for the surgery.

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