What’s changed since diagnosis

At the beginning of this shitty ordeal, I had lots of imaging done. We determined that there is cancer in my bones (skull, ribs, vertebrae, and sternum), no cancer in my liver (benign spots only), that there are cysts on my ovaries (benign likely too), and there are very TINY spots in my lungs (also likely benign, but too small to know for sure or to biopsy). I was relieved in some ways because having bone-only mets is the best of a crappy situation. Those with bone-only mets usually do better in the long run.

After 4 weeks I was given another CT scan (this one being for the start of the trial). In that period of time the spots on my lungs grew — 3mm each. That much growth in just a few short weeks led my oncologist to believe that those spots on my lungs are actually metastatic lesions. Shit. Not good news. The good news in this situation is that my treatment doesn’t change. I get to still be in the trial.

Sitting for my second immunotherapy infusion

When I went in last week to get the second infusion I also had blood work done, as I do two out of every three weeks. This brought some more unfortunate news. I expected my blood counts to be low as that’s one of the more common side effects to the medication I am on. Sure enough, yup, my blood counts were low. But not too low that I couldn’t have treatment. What surprised me was that my thyroid numbers were off the charts. My thyroid was in a state of hyperactivity.

Immunotherapy is amazing. Immunotherapy activates part of my immune system so that my own body can find cancer and kill it. But it can also cause my immune system to attack normally functioning organs, causing some pretty serious side effects. It was (and still is) a risk I was willing to take. My oncologist said that because I am so closely monitored, they would likely see any serious side effects before I would notice symptoms.

Well, that is what is happening with my thyroid. I thought I would have many more cycles under my belt before something like this showed up. Unfortunately, it happened after my first cycle. Immunotherapy is causing this issue. My provider is going to continue to monitor my thyroid numbers, but she predicts that I will eventually (sometime soon) have a hypoactive thyroid. When that fluctuation happens I will be referred to an endocrinologist. Thyroid issues are generally well managed with a daily medication, so I am told.

These are the kinds of things that most people with MBC get to figure out. I have to ask myself questions like: do I want to have the chance to live longer, but the tradeoff is that I might have other diseases or issues to deal with (caused by the treatment for MBC)? Well, if those issues are well managed would I trade that for the standard of care for MBC (which isn’t well managed)? What if those diseases amount to a worse quality of life than that of MBC? What if the treatment doesn’t work for MBC and I am left with serious side effects from treatment? It’s emotionally draining, and it’s hard to know what the right choice is.

But enough with the bad news! One super AMAZING thing that has happened since I was diagnosed is that the tumor on my sternum feels MUCH smaller than it did 4 weeks ago. I have more imaging on December 2, with results on December 6. This will hopefully give us a good idea of what has been happening in my body since the start of treatment. Fingers crossed it really is shrinking and isn’t hiding behind my sternum and that the spots on my lungs and bones are also shrinking.

New Normal

I wouldn’t say sharing my experience comes easy. It’s hard for me to share something when I am in the thick of it. I want to be able to tell people that I am going to be okay or that I am feeling good, but many times that isn’t the truth. I am pretty successful at compartmentalizing, and in the weeks following my first infusion I was able to convince most people that I was doing quite well.

The truth is, it’s been hard physically and emotionally. In the grand scheme of things, I am doing well, but the new normal does feel pretty different than my old normal. The list of side effects for the immunotherapy drug I am on is long, and it overlaps a lot with the CDK4/6 inhibitor and the AI. The first week after my infusion my side effects were the most intense. I tolerate all the drugs pretty well, but I am not side-effect free. On a daily basis, I am dealing with fatigue, nausea, GI issues, joint pain, headaches, and hair thinning.

Fatigue has been the hardest of all of these things for me to deal with. I am still wrapping my head around doing less. It feels as if I am running at about 60-70% of my normal energy level. Each morning I wake up feeling foggy until about 10am. I am getting anywhere from 8-10hrs of sleep, and yet I still feel tired and just worn out. I used to wake up at 5:30am to workout before getting ready for work, but I haven’t been working out because I cannot get myself out of bed earlier than 6am anymore.

I love cooking for my family, but with my lack of energy, that has been difficult for me to do. Thankfully our fridge has been filled with delicious meals made for us by our friends. I am incredibly grateful for our community and their support. After a day at work, even with dinner taken care of, I am exhausted and have had to tell my kids I don’t have much energy to play. Andrew has also been generous with his work flexibility and has taken time to manage many of the household/familial tasks that I usually do.

Fatigue from treatment has also taken an emotional toll on me. Giving my energy to work and not having a lot of energy left at the end of the day for my kids is REALLY hard. I want to be more present for them, not less. Adding more work to Andrew’s to do list has also been hard for me. He already does so much for our family. It doesn’t feel like balance when I can’t do my part. Illogical? Likely, but I can’t help but feel like I am not doing my best. I want to be a good mama and a good wife. I want to be a good friend and a good librarian. I want to do it all, but that also won’t yield the best results either. At some point, my new normal will feel right again, but right now my scales feel out of balance.

What is my diagnosis?

Let me take you back two years. In 2016 I was diagnosed with Stage 1 Invasive Ductal Carcinoma (IDC). My cancer was small in size but aggressive in nature. My tumor was ER/PR+ meaning that my cancer cells really liked estrogen and to a lesser extent progesterone. I chose a lumpectomy, aggressive chemotherapy, and radiation. After active treatment, I opted to take Tamoxifen (a daily oral medication that blocks the uptake of estrogen in breast cells). At this point, my body was still making estrogen, but the tamoxifen was supposed to be preventing the absorption of estrogen in my cells.

Now fast forward to 2018: In July I found a small lump on my sternum. We were traveling abroad, and I knew I had an OBGYN appointment scheduled for when we got home. I figured this could wait a couple of weeks. After two weeks the lump disappeared. Wasn’t palpable. Cancer doesn’t appear and then disappear. I was feeling pretty good about this. My OBGYN NP also couldn’t palpate the lump. So I left her office with orders to call if the lump reappeared. A week later, it was back. I took a video of my chest and emailed it to my nurse practitioner. The fantastic woman was on vacation and got back to me right away. She wanted imaging done to figure out what this mass was.

A call to my oncologist office and one ultrasound later, we were still perplexed. An MRI would be needed next. The day I had the MRI I decided to get my images on a disc and look at them at home. What I saw scared me. I saw a tumor that wasn’t just on my sternum but growing behind my sternum, into my chest cavity. My oncology NP called me the next day and told me it appeared malignant, and there was more. A spot on my spine also looked concerning. I would need a biopsy.

A biopsy, followed by a bone scan, and a CT scan led to what I most feared when I was an “early stager.” I am metastatic. I have metastatic breast cancer. Thirty percent of early stagers (those stages I-III) will become metastatic. I was in that thirty percent.

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The scans showed that breast cancer is in my sternum, spine, skull, and ribs. When breast cancer leaves the breast and travels to distant parts of the body, this doesn’t mean the cancer becomes bone cancer, or liver cancer, etc. This is still breast cancer, but it has traveled to my bones.

What is my treatment?

This first part has a lot of sciencey lingo. I have tried to make it digestible, but if I have failed, read towards the bottom, there is a more synthesized version of my treatment plan.

Before the beginning: When I was initially diagnosed, I was under the impression that I would be doing hormone therapy alongside a drug classed as a CDK4/6 inhibitor. That is the standard of care for hormone-receptive MBC patients right now, as the first line of treatment.

In September I was given Zometa, which is a bone strengthening drug. I was also given my first injection of Lupron. Lupron is an ovarian suppression (OS) drug that shuts down ovarian function. This shuts down the largest producer of estrogen in my body, essentially cutting off my cancer’s food source in a significant way. Doing OS also puts my body into menopause. Menopause at age 34 comes with a lot of side effects and worries. More on this in a later post.

The beginning: Last week when I came in to get my second Lupron injection and to start on the other medications I was told that I was eligible for a clinical trial. A spot just opened up. I will post a full link to the clinical trial on the documents page for those that want to read it. Essentially the trial is adding an immunotherapy drug to the standard of care I was already planning on doing.

Immunotherapy has a lot of promise. I was very excited that this was an option for me. It’s a drug that allows my own immune system to fight the cancer cells.

The treatment plan right now: Currently I am on track to have immunotherapy every three weeks, Lurpon every month, Zometa every three months, and daily I will be taking an aromatase inhibitor (AI) and the CDK4/6 inhibitor.

If that felt like I was speaking a foreign language, let me make it a little easier to understand. The OS and the AI make it so there is less food produced and available for my cancer. Those take away a lot of the food supply. The CDK4/6 inhibitor works as a sort of breaking mechanism, slowing down the cancer cells rate of growth. And the immunotherapy works at activating my immune system and allowing my own body to fight the cancer cells. We are attacking this cancer from all different angles.

When cancer comes back so quickly and aggressively, it’s necessary to attack it from different pathways. And that is what is happening with these therapies. I will be on this clinical trial for as long as it is working for me. I am hopeful that in 6 weeks when I have scans, that I will see no progression of the disease in my body.

The rollercoaster

This last week was a rollercoaster. My carefully planned week of appointments, work, and after-school activities were upset many times. This balancing act was getting hard, and on Wednesday I finally broke.

Leading up to the actual moment that I was getting my first infusion of immunotherapy, I was anxious as hell. On Monday I had to have blood work and scans down in Boston — all prep for this trial. I was supposed to go down EARLY and be in and out and return to work by 10:30am. Imaging was running 2 hours behind which caused everything else to fall behind as well. I didn’t return to work until noon.

On Wednesday I got a phone call from my research nurse saying that I needed to do a blood test to check my menopausal status. Could I drive down to Londonderry to get this blood test today? Oh, and they close at 5pm. After a few phone calls I ended up hearing, even if you do the blood test today, it might not be processed in time for you to start the trial tomorrow. WTF?! No. All I could think about was that I needed to do everything, anything to make sure that I was actually on this trial on Thursday.

I had to think quickly, who could help me with after-school care for the kids? Who could close the library (where I work) early? Would I have to cancel after-school activities at the library? Would I make it to the lab in time (it’s an hour away)?

As these questions swirled through my head, I lost it. I was uncontrollably crying in a stairwell of the library. How can I do this? If the trial hasn’t even started, and I can’t keep all of these plates spinning and my emotions in check, how can I handle the demanding schedules of the trial, the side effects, my family life, work?

With a hug from a co-worker and a few texts later my fantastic neighbors pulled through with rides, entertainment, and dinner. And one of my co-workers said she could stay to close the library. I would be able to make it to the lab in time after all. Yay!

But it was all for naught. I received communication from my research nurse that I wouldn’t need the blood test after all. I would just have to do a blood pregnancy test the next morning, and that was good enough.

Ugh.

I am thankful I didn’t have to rush down to Londonderry, but I could have really done without all of that.

First infusion

I sat down in the infusion suite yesterday still anxious that this wasn’t actually going to happen. But my infusion nurse hooked my IV up to the infusion machine and off I went. 30 min drip time, with a 60 min observation period. It happened. I got my first immunotherapy infusion! I also started taking my oral meds during the infusion.

Right, afterward I felt a little foggy but relieved. We had to wait around Boston for 8hrs post infusion to get a final blood draw. Andrew found us a pizza place to eat at. I felt a little nauseous, but I forced myself to eat. I am glad I did, that place was yummy! We also decided to kill a few hours at the movies. We saw Crazy Rich Asians. It made us laugh, made me cry, and was just the perfect way to pass the time. Eight hours later I was back in infusion, and I got my blood draw, and Andrew drove us home. What a LONG day.

I just want to give a shout out to my mother in law. This day was LONG for all of us, but knowing my kids were in her good hands this day made it possible for me to focus on what was right in front of me.

Today I feel pretty decent. I have had a little nausea all day, but I think that it’s due to the oral meds and not the immunotherapy. It’s manageable and not terrible.