Update – Page 4 – Life As I Know It

MBC – the “gift” that keeps on giving

Happy September friends and family.

I feel like I missed summer so I’m being intentional about eating lunch outside in the sun! I hope you are still getting outside now and again to get some fresh air and vitamin D.

This past week was a busy one medical-wise. I had my regular monthly appointments. Additionally I had an MRI on my lumbar spine region (lower back) and met with a neuro-oncologist.

My medical oncologist is lowering the dose of one of my medications (Ibrance). There are 3 dose levels. I’ve been on this highest dose for 4 years. Apparently after being on it for that long it is common for white blood cells to start to tank (neutrophils specifically). So, I will go to the next lower dosage. It should not affect the efficacy of the treatment.

It’s interesting that the default is to start patients on the highest tolerable dose of a drug and then lower the dosage when there are side effects or complications. There is a group of patient advocates that are trying to change this so doctors don’t default to the highest dose to start.

Anyway, this change should not affect my treatment. The change will happen next month.

The neuro-oncologist believes he has found the source of my nerve pain. It appears that I have tumor on both the L3 and L4 vertebrae. The tumors are on the inside of the vertebrae and pushing on the spinal cord. That is what is generating the nerve pain in my hip and leg.

His recommendation (which I will follow) is that he do surgery to remove the tumor material. It’s not scheduled yet, hopefully will happen within 2-3 weeks.

We don’t know if the tumors are new or if they are “old” and just got pushed/moved around. The first step will be to get me out of constant pain. The second will be for my oncologist to determine if the cancer has awakened or is still sleeping. I won’t have that information until early October.

With Metastatic Breast Cancer (MBC) the cancer spreads beyond the breast. I have bone only disease. This is good in that bone only disease does not kill you. However, it can mess you up royally. The cancer in my spine has now made it very difficult to walk. The current nerve pain only allows me to lay and sleep on my left side. It’s possible though that the bone disease can cause incontinence and other very unpleasant things. So, when I say “Things could be worse.” They could, indeed.

Maddy has started her junior year of HS and a new year of dance. Evelyn is moved in to her apartment and in the thick of classes as a sophomore at University of Colorado Boulder. (She is VERY excited for the football game tomorrow! Look for her on tv.) Glen finished his fly fishing trip and will be traveling for work next week.

I have work travel scheduled (which will likely be cancelled). I also am/was planning to go to a breast cancer symposium in Pittsburgh, attending as a patient advocate. We will see how all this travel shakes out with impending surgery. I don’t have a great feeling about this travel happening either.

This back surgery is a bump in the road. One thing at a time. Thanks to everyone for your support and love. Right back at ‘ cha!

We take our spine for granted! Stop doing that!

A summer of good news

I’m happy to share that my cancer seems to be quiet and stable. I’ll take this.

I had scans 2 days ago and appointments today with my oncologist and for treatment. The CT scan identified something on my sternum but it can’t distinguish if it is healed bone or new cancer. Imaging is imperfect.

I have been getting CT scans (with contrast) and a bone scan roughly every 3 months since my diagnosis. I have bone-only disease and it’s hard to get good information from these images.

My oncologist wants to switch me over to PET scans, and he wants to do the next scan in October, two months away. I think he is suspicious of the CT results. Insurance companies don’t like to pay for PET scans but the oncologist is pretty confident he can make a good argument. I’ve only had one PET scan and that was how I was diagnosed with bone metastasis.

My immune system is not great right now – my blood work came back with low neutrophils. So, I have to wait a week to restart my Ibrance. I’ll have more lab work next Wednesday and if it looks better I can restart it. If it comes back the same then he will probably lower the dosage of the medication.

I have been having nerve pain all summer. I had a kypoplasty on June 1; the pain largely continued. I had an epidural steroid injection 2 weeks ago; the pain continues. Since nothing showed up on the CT scan, we can assume it’s not new cancer so I’ll head back to the other doctor to see what we can do.

The nerve pain is from the L4/L5 and extends all the way down my leg which makes walking difficult. I’m trying to get exercise in the warm water pool of the YMCA. It’s been a frustrating summer from a physical standpoint.

In other news, Evelyn is home from Europe and Maddy finished a 2 week, 12-hour per day dance workshop at the University of Colorado. It’s nice to have them both home. Ev will move into her apartment in ~1.5 weeks. Maddy starts her junior year next week. Glen is working a lot and will take time off later this month for an annual fly fishing trip.

However you choose to finish out the summer, I hope it is exactly what you need it to be.

Summer update – status quo

Hello friends and family. Checking in with you all to share I have no big news. That is good!

I had my monthly oncology appointment and things are “fine”. I’m taking my Ibrance (CKD 4/6 inhibitor), I got my shots today (Lupron & Fulvestrant) and I’ll go back in 4 weeks. Such is the life of an MBC patient .

I’m grateful for this. So many friends and acquaintances with MBC are not in a relatively easy place. I acknowledge that life is good right now.

Life is good but not pain free. I had my back procedure on June 1 and I am still having hip and leg pain from the nerve compression by my spine. My physical therapist and acupuncturist pointed out that it will take 4-6 weeks after surgery to feel normal. So, I wait and hope that it all resolves.

My blood work – specifically tumor markers – have been rather erratic, bouncing high and low. Because of this my oncologist said he is going to focus on results from scans and take any blood work information “with a large grain of salt”. I will have scans again in August.

Scan, assess, repeat.

Late last month we were in Galveston, TX for Maddy’s national dance competition. She did amazing and we are super proud. We spent a few days in Steamboat Springs after the Fourth of July and it was very relaxing. I’m grateful for both opportunities.

I hope your summer is shaping up exactly how you’d like it to be. If you get some wanderlust, come on out to Colorado. We have space for you and lots of fun things to do in summer.

~~~

Current meds: Ibrance (oral meds), Fulvestrant (injection), Lupron (injection), Zometa (infusion)

Status quo & pain management

“We do not need to change treatment plans at this time.” Music from oncologist Dr. Andorsky’s mouth to my ears this morning! What does this mean? My CT scan showed no progression of cancer, things are stable.

So, we carry on!

The one thing that did show up on my CT scan was the hot mess that my L4 vertebrae is, including a new compression fracture. I’ve not been feeling well since my fall in April and my oncologist was a bit worried this might have been due to progression. It appears that the pain is all related to my fall.

This of course is fantastic news and quite a relief. Is a CT scan absolutely definitive? No, it is not. It is a bit of an art to monitor terminal cancer. This being said, we have as much data as possible and so I’m confident we are on the right path.

My oncologist was very happy with how things are going and I think he was a bit relieved to see me in better spirits.

The reason for my better spirits – besides a stable scan – is that I’ve been able to keep my pain under control and I feel like I’m getting stronger. I can walk unassisted (no cane). I can walk more confidently both up and down stairs. I have not resumed longer walks or walks outside. I’m staying on the treadmill and trying to increase my length and endurance.

We have a plan to hopefully eliminate the pain!

On Thursday, June 1, I am scheduled to undergo an outpatient procedure to fix the compression fracture on my L4 (a kyphoplasty). Basically, they will go in, guided by imaging, and place a little balloon where the fracture is, lift up the vertebrae and inject some cement so that the vertebrae is not compressed.

The pain I currently have is mostly nerve-related pain in my leg. It’s decreased with my medication, but is definitely still there. I am very optimistic that this procedure will help and I’ll be back walking on the trails by mid-June! Cross your fingers with me!

And also please celebrate with me. Living with Metastatic Breast Cancer is stressful and my family and I live in 3 month increments. This provides just a tiny bit of breathing room and will make for a fantastic summer.

I always have a plan for when I get my CT scan results. Today’s treat was a fancy iced coffee.

April Update

Hello there everyone. My cancer update for April is boring. Just continuing on with the current treatment. My bloodwork tumor markers dropped a little which is very good. Otherwise, we just stay the course until I have scans again in June or July. The scans are how they determine if the cancer is progressing. Of course if I feel like my health is taking a turn for the worse, we would move those up. I’m still on my second line of treatment (since June 2022):

Fulvestrant shots (monthly)
Lupron shot (monthly)
Ibrance capsule (daily)
Zometa IV infusions (quarterly)

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Health/life-related update: The last month has been rough. I share this not in the spirit of complaining – I want to shine a light on the challenges of the way the for-profit American health care system is set up. As I advocate for myself it requires many phone calls, appointments, treatments and medications – all under the authority of the insurance company. The system puts absolutely all the responsibility for care on the patient, which works ok if you are not very ill. There is no central coordination. Every decision I make has to be considered with regard to insurance. The insurance company is dictating my care. Frankly we need a single-payer system which is not perfect but would address the vast majority of the challenges encountered. We are the ONLY country in the world with this kind of system. It is not the best, it’s not even passable any longer.

I know friends and family that are going to through similar challenges. I’m trying to figure out how to affect some change in the system.

I am grateful (and slightly annoyed) that my medical team finally connected me with a “stealth” nurse navigator (their word, not mine). During my appointment last Wednesday it was apparent that my mental health was in the toilet and I could not manage “all the things”.

Historically, I’ve had zero luck with nurse navigators. “Stacy,” however, is a nurse navigator they send patients to when everything has really fallen apart. Grateful because she was amazing, dealing with and resolving almost all the challenges within 24 hours. Annoyed because the best and most efficient staff should not be some secret that they don’t share with patients until their situation has become completely untenable.

The list of challenges I’ve been facing is too long to share. (No one other than your mother wants to hear all the detail – right mom?)

I’m trying to keep my sanity in check and one of the things I managed to make happen was to have Glen and the girls fly out to join me in Pasadena. I was on a work trip and it was spring break week for both girls.

I’m grateful for the few days we got to explore together. I also managed to squeeze in dinner with my bestie – which was too short but better than nothing at all.

In spite of the shit-show of cancer and all the related struggles, life is a gift. Make the most of it however you can.

Reunited (elevator mirror!); Super quick visit with Laura and stopped to see Jordan; I walked past Pasadena City Hall everyday on my way to the event; Glen & the girls hit Universal Studios; Obligatory visit to the Rose Bowl; Walking along the beach in Santa Monica

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.

~~~~~

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

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!

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

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.