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“But you don’t look sick…”

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I get it. There’s a certain visual that many people expect when you say you have cancer and I don’t fit the expectation. I’m not bald, though I do have hair in the shower drain every day, and hair that has the texture of straw. I don’t look emaciated. I’ve actually gained over 15 pounds due to being thrown into menopause and having my metabolism go ice cold as a result of my medications. So, I’ve heard “But you don’t look sick” when I’ve shared that I have metastatic breast cancer.

For most people, the “metastatic” part means nothing. They just hear “breast cancer” and automatically think I’m in chemotherapy and that at some point, treatment will be over and I’ll be “cured”

But there is no end to treating this disease. No “treatment complete” celebration. Managing this disease is a marathon and  I’m at the beginning of the race. I’m lucky that I can still work and maintain a pretty active lifestyle.  My tumors are on my liver and I don’t feel any effects from them.

I do take a cocktail of drugs everyday. Two pills to fight the cancer, one pill to manage the hot flashes from the medications and early menopause, and one pill to manage the high blood pressure from the weight gain. Once a month I get a shot in my belly to keep my ovaries quiet and not producing estrogen. I have blood draws a couple times a month and PET/CT scans every 2-3 months. This is all just the routine maintenance of the disease to keep me going.

Though the cancer doesn’t affect me, the medications do. I have hot flashes, hair drying out and falling out, and gastro issues that I won’t go into detail on. Towards the end of each Ibrance cycle, I am more tired as my white and red blood cell counts are at their lowest point.

So, although I “don’t look sick”, I am sick. Someday, cancer will most likely kill me. I’d love for those around me to skip the “you’ll beat this” speak and just be aware of the marathon I’m running and that there’s usually more to someone’s situation than meets the eye.

Medications Used to Treat MBC

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Since my diagnosis, I’ve seen so many different drug names tossed around that it’s hard to keep track. This table is an attempt to organize the ones that I’ve heard of. This is certainly not an exhaustive list and if you find any errors, please let me know. I hope to continually improve and update this table.

Drug nameChemical NameFDA approval for BCTypeBC TypeUsed with
Kisqaliribociclib3/13/17CDK4/6 InhibitorHR+, HER2-Faslodex
Ibrancepalbociclib3/31/17CDK4/6 InhibitorHR+, HER2-aromatase inhibitor
Verzenioabemaciclib9/28/17CDK4/6 InhibitorHR+, HER2-Faslodex
Afinitoreverolimus7/20/12mTOR InhibitorHR+, HER2-Aromasin
Aromasinexemestane10/21/99aromatase inhibitorHR+
Faslodexfulvestrant8/22/2017 (expanded)Estrogen Receptor Downregulators (ERDs)HR+, HER2-
LupronLeuprolideLHRH (luteinizing hormone-releasing hormone) agent hormonal therapypre-menopausal and ER+ or PR+.shut down the ovaries and stop them from producing estrogen; use with tamoxifen or aromatase inhibitor
Zometazoledronic acid2/02commonly for bone metastases
Femaraletrozole1/01aromatase inhibitorER+, PR+,
Zoladexgoserelin acetateLHRH (luteinizing hormone-releasing hormone) agent hormonal therapypre-menopausal and ER+ or PR+.shut down the ovaries and stop them from producing estrogen; use with tamoxifen or aromatase inhibitor
Lapatinib Tykerbkinase inhibitorHER2+
PerjetaPertuzumabmonoclonal antibody HER2+Herceptin
XelodaCapecitabineAntimetabolite chemotherapyTypically it's used to treat metastatic breast cancer that has stopped responding to Taxol, Taxotere, and Adriamycin.
Herceptintrastuzumabmonoclonal antibodyHER2+
Arimidexanastrozole9/1/00aromatase inhibitor
Lynparzaolaparib1/2018PARP inhibitorgermline BRCA mutation, HER2-
TaxolPaclitaxel intravenous infusion

Hair Loss/Change

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It took a few months before I really started noticing that my hair was thinning. Started seeing more clumps in by the shower drain and more strands in my hands after a shower. The texture had changed as well. I used to have thick, full hair. Now, it’s dry and has an odd wave to it.

Some say it’s due to the Ibrance and others say it’s the Letrazole. Regardless of which one is the culprit, it does seem to be a pretty common side effect for these medications. But what people seem to do about it seems to vary. Here are a few things I’ve seen discussed on the metastatic breast cancer groups:

  • Shave it off – yep, go full chrome dome. Not for me, but some swear by it 🙂
  • Short cut – If your hair is thinning, sometimes a nice short cut can give the appearance of fuller hair.
  • Nioxin 4 System – I just started hearing about this one and am giving it a try.
  • Coconut Oil – rub in once a month
  • Biotin supplements – not tried this and the science is a bit mixed.
  • Hair extensions
  • Keratin treatments – I had one of these and it only last a month or so. Treatments I had prior to my medications used to last for 3 months. Still, it’s another option to hep with the frizziness.

After a little over a year on Ibrance and Letrazole, my scalp is thinned a little as you can see below. I’ve also developed a bit of a wave in my hair that wasn’t there before and the texture is a bit drier:

Eyebrows

My eyebrows have always been on the bushy side so although I think they have thinned, I still have plenty. I’ve heard from many that have lost most, if not all, of their eyebrows on some of the medications used to treat metastatic breast cancer.

One popular technique mentioned is microblading. This is a tattoo technique that fills brows out or reshapes them by drawing on tiny lines that look like individual hairs. Below is a before/after example of microblading:

Anything else you’ve had success with?

We need 30 for 30 now

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30% research dollars for 30% metastatic breast cancer patients

When I was diagnosed with metastatic breast cancer last year, I had no idea that it was incurable. I also had no idea how little research is being done to find a cure. Honestly, it didn’t make sense to me. What about all those “Race for the Cure” events for breast cancer that you hear about every year? Where’s all the money go for all of the “pink” marketing?  I was shocked to hear that most of it goes for preventing breast cancer and early detection. The big problem here is that we don’t know how to prevent breast cancer. Mammograms? Yeah, well, none of the mammograms I had during my diagnosis for either of the first or second bout of DCIS showed anything. My breast tissue was too dense. Mammograms were not an effective tool for me. I had blood coming out of my nipples. That was my red flag that something wasn’t right. I was also diagnosed with DCIS, or stage 0 breast cancer.  From a breast cancer diagnosis standpoint, it’s supposedly the most treatable variety. I had DCIS twice in a four year period. I had a lumpectomy, radiation and a bi-lateral mastectomy. I was told by my breast cancer surgeon that “I’d never have breast cancer again.” Yet, two years after she uttered those words, I was diagnosed with metastatic breast cancer. I feel that I’m walking proof that prevention and early detection are not how you keep someone from being diagnosed with this terminal disease.

So, since we don’t know exactly how to prevent it and early detection isn’t a fail safe either, how about spending some money on how to cure it? The tragic truth is that 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die. I have learned that very few women know this. I didn’t know this until my diagnosis of metastatic breast cancer.

How much of the “pink” money goes towards curing metastatic breast cancer? A measly 2-5%. Even though almost 100% of women who are diagnosed with metastatic breast cancer will die from it,  popular breast cancer fundraising movements only dedicate 2% towards research to cure it. I have found one group that is working to raise awareness about metastatic, Stage IV breast cancer, and to fund research to extend the lives of people living with MBC.

METAvivor has started a nationwide movement dedicated to creating awareness about metastatic breast cancer, with a push to dedicate 30% of all breast cancer research funds toward the metastatic breast cancer that 30% of patients will ultimately face. Put simply, thirty for thirty.

The largest foundation for fighting breast cancer is the Komen Foundation that was created in 1982 with the vision of “a world without breast cancer.” Over two decades and billions of dollars later, breast cancer is still here, still killing people at pretty much the same rate. We need more than a focus on prevention and early detection. Early detection has proven no guarantee against metastasis and death.

We need 30 for 30. We need organizations like the Komen Foundation to keep their mission the same, but put more money where it’s needed. Since 30% of early stage breast cancer diagnoses will re-occur as metastatic, let’s dedicate 30% of research money towards finding a cure or to help find more effective treatments to turn metastatic breast cancer into a treatable, chronic or curable condition.

Tumor Markers

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[Edit: markers updated 4/26/19]

Tumor markers are basically substances that are found at higher than normal levels in the blood of some people with cancer. A cancer tumor often produces a specific protein in the blood that serves as a marker for the cancer. There are three tumor markers that are commonly used in metastatic breast cancer: cancer antigen 15-3 (CA 15-3), cancer antigen 27.29 (CA 27.29), and carcinoembryonic antigen (CEA). Oncologists sometimes monitor these markers to help determine how well you are responding to a particular treatment.

To be more specific on what they measure, this is one of the best definitions I’ve found for CA 27.29:

“CA 27.29 is an antigen—that is, a specific type of protein present on the surface of cells and is produced by a gene called MUC-1. CA-27 is a “glycoproteins,” (glyco means sugar) and may be present on the surface of epithelial cells like breast cancer cells. Breast cancer cells can shed copies of the CA 27.29 protein into the bloodstream too.” (reference)

For CA 15-3, it’s a protein that your breast tissue normally produces. However, if there is a cancerous tumor in your breast, the levels may increase as the number of cancer cells increase.

One thing I learned early on is that tumor markers are not very reliable and very greatly in their reliability from person to person. They can be the source of great anxiety but it’s really important to just keep them in perspective. They are just one tool that your oncologist will use in conjunction with your scans and other tests. I currently get my markers done every month. I’ve heard of some oncologists who don’t even use them because they can be unreliable.

To give an example, here are the most recent graphs of my tumor markers:

It’s a little blurry, but this is my Carcinoembryonic Antigen (CEA). You can just imagine how I felt when I saw the first reading after I started my treatment in early May, 2017. It leapt up! My oncologist said it was pretty common to have your markers jump after you first start treatment. It’s all the dead cancer cells now circulating in your blood. It swung down for a while and when it start climbing again in March, 2018, it made me a little nervous. Here’s another test:

This is my Cancer Antigen 27.29. Aside from the initial spike, it’s been on a downward slope. And lastly:

This is my Cancer Antigen 15-3 chart. This has also been trending downward after the initial spike.

So what do these mean? Not much on their own. They are simply data points to use in combination with other things like scans (PET/CT), blood tests (Comprehensive Metabolic Panel), biopsies and physical exams. During all of this time, I’ve felt great. My PET/CT scans have all been “stable” with a little regression on a few of them. So, even though my tumor markers have been jumping around a bit, I don’t really fuss too much about them alone. They need to be taken in context with other tests.

My advice would be to be glad to have the information, but don’t allow yourself to freak out over a rising number here or there. Look at it holistically in conjunction with everything else.

To NEAD or not to NEAD

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Shortly after I joined a closed Facebook support group for metastatic breast cancer, I saw people using an acronym that I was not familiar with: NEAD. It stands for “No Evidence of Active Disease” – it’s about as close to “cure” as MBC folks get. It’s wonderful to see others celebrating NEAD status as a result of their different treatments. It gave me hope that I, too, would be posting about my NEAD status as a result of my Ibrance/Letrazole regimen.

From the very beginning of my treatment until over a year later, my scans were always “stable” which meant that there were no signs of progression or new disease. It also meant that we hadn’t moved the needle at all on reducing the cancer . Everyone tells you that “stable” is good and to be happy. I most certainly am happy that the disease is not increasing. However, I can’t help but have a slight “stay of execution” feeling. If after a year we haven’t made a dent in the cancer, we probably never will. We are corralling the beast for now but at some point in the unknown future, it will slip through the fence and start advancing again through my body. Then it will be time to reach into the MBC bag of medicine and see if there’s another line of treatment we can try. And all the while hoping that the cancer doesn’t progress too much and, even better, the next line might get you closer to that NEAD status.

With “extensive” mets to my liver, I’m frequently thinking about the cancer having the opportunity to grow and take up further residence in my liver. My mother had stage 4 endometrial cancer and what eventually killed her was liver failure. I know to a large degree, how or when the cancer spreads is out of my hands and that I’m mentally better off living in the moment and not thinking about such things. It’s hard but I keep striving towards that end.

Tomorrow I have another PET scan. I used to hope for regression with the scans, but now I set my expectation to be that I remain “stable” since that’s much preferable to “progression”

Maybe NEAD status will come someday. I’ll continue to hope and continue to try to live my life in the here and now.

Weight Gain

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Yep, weight gain seems to be a pretty common side effect of the medications used to treat metastatic breast cancer. For me, I’m not sure if it was the Ibrance, Letrazole or Zoladex that caused me to quickly gain over 17 pounds in less than 3 months. For most women, the shift into menopause is gradual and takes years. Read More

Dealing with Hot Flashes

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My own personal summer, internal global warming, etc….though my name for my hot flashes in any given moment may change, they always kinda suck. I’ve tried to wage this war via medications, gadgets, and quick tricks. Here are some methods that are part of my current repertoire: Read More

Welcome to the club

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Welcome to the club. You didn’t ask to join, but here you find yourself. You’ve been diagnosed with metastatic breast cancer (or “MBC” for short). You join an estimated 250K other club members trying to navigate this unexpected path. As a fellow club member, I created this resource in hopes of helping to guide others with things I’ve learned along the way.

Contrary to the incorrect conventional wisdom that you got MBC because you either didn’t take the right treatment or prevention measure, you too were most likely floored by your diagnosis and had doctors tell you that you did everything right and that this should never should have happened.

My diagnosis came after having battled DCIS two separate times over a four year period. After having a lumpectomy, radiation and a bi-lateral mastectomy, you would think that had covered my bets against a re-occurrence. Heck, even my last breast surgeon told me, “You will never have breast cancer again.” I’ll also add that neither of my diagnoses were detectable on mammogram or  ultrasound. 

After I was laid laid off, I was feeling stressed out and noticed my blood pressure was quite high. I made an appointment with one of the general practitioners in my doctor office since my primary was out for a few weeks. The doctor I saw put me on a low level high blood pressure medicine and told me to get a blood draw in a couple weeks to check that the medicine was being tolerated. 

That blood test showed high calcium. High enough that they wanted to test for hyperthyroidism. That was the most common cause of high calcium. The next most common was Hypercalcemia of Malignancy, which was a distant second. Matter of fact, on a blog post I read, they summed it up with, “Thankfully, hypercalcemia of malignancy is uncommon and generally not worth worrying about in most healthy people.  (Really, please don’t worry.  Kindly read on.)“

After a series of additional blood tests, I was diagnosed with Hypercalcemia of Malignancy. I started seeing an oncologist (for the first time in all of my diagnoses) who put me on Palbocib (a targeted therapy classified as a “cyclin-dependent kinase (CDK) 4/6 inhibitor) along with Letrozole (decreases the amount of estrogen the body makes and helps to slow or reverse the growth of breast cancers). 

And since my cancer likes to feast on Estrogen, monthly shots of Zolodex effectively shut down my ovaries’ production.

It’s about a year later and the cancer appears to have halted it’s march for now, leaving me fighting the side effects of these medicines that are keeping me alive. Don’t get me wrong, I’m very grateful and happy to have the cancer at bay, but it still doesn’t make the 17 pound weight gain in three months any more desirable. But that’s a whole other blog post.

Now I try to go to work everyday and “act normal”. Since I do fear becoming a target of my employer for any future lay-offs (due to my high medical costs to their insurance), no one at my work knows about my diagnosis. And I work very hard to keep it that way. I try to hide the inner flames of the unpredictable pop-up hot flashes. I tip-toe around all the awkward, too close for comfort conversations that keep coming up with co-workers. I try to stay under the radar. 

I kinda understand my role as the “Angel of Death” to friends and family now and trying to accept that their perception of me has changed forever. Some will think that because I’m such a “strong fighter”, that I’m going to “beat it”. So, the others out there with MBC aren’t also fighters?

Our destiny is written in our cancer’s genetic code. If we can just put more resources into reverse-engineering these codes rather than putting almost all of it into pink ribbon wearing that completely ignores the fact that up to 1/3 of those diagnosed with an early stage cancer will go on to develop metastatic breast cancer, that would actually save lives.

 

I hope this serves as a useful resource for others with the MBC diagnosis. I also hope it helps educate