MBC Day!

Greetings to all of you followers! I have been taking a big step back from regular updates in order to really be present in my normal day to day life. It’s been a nice break! Just because I haven’t been posting doesn’t mean things haven’t been happening in Cancerland though. Just the opposite actually. Nothing terrible, but it hasn’t been dull.

I’ll give you a quick recap to get you up to speed, and then I will let you know where I am at today and why this post is called MBC Day. So back at the beginning of 2020 I was having some lung inflammation (likely due to the immunotherapy) which was a bummer because it wasn’t getting better after a break from my immunotherapy. Then COVID hit, and we decided that if I were to stay on the immunotherapy and my lung inflammation continued to worsen that would put me at even hirer risk for comorbidity issues if I were to catch COVID. So I have officially been taken off the immunotherapy, but I am still in the clinical trial and still take my daily oral medications (abemaciclib and anastrozole).

In May, I started experiencing almost debilitating indigestion. I would do a few weeks on omeprozole and taper off to see if that would fix the indigestion long term. Nope nada. I tried Pepcid AC and tums and still the indigestion would come back. It not only wasn’t going away completely, but it was coming on with intensity more frequently. I kept track of what I as eating and drinking and how I was sleeping. I was uncomfortable often and nothing seemed to trigger the indigestion. I started working with a GI doctor at Brigham and Women’s Hospital that specializes in immunotherapy related GI issues because my doctor didn’t know if what I as experiencing was as a result of the immunotherapy I had been on previously, or if it was as a result of the abemaciclib. I tried a break from my abemaciclib. The frequent runs to the bathroom definitely cleared up with a break from the abemaciclib, but other than that I had very little relief from the indigestion. The next step was to do a bunch of blood tests and head in for a upper and lower endo scope.

I ended up being told I had a C-Diff infection which was a surprise to say the least, and I am not even sure that it was truly a full blown infection. That’s another story all together, but at the end of the day I took a course of antibiotics to kill off the C-Diff infection. After that I went and had an upper endoscopy and a colonoscopy. The results of the scopes showed a delayed immune response likely due to the immunotherapy. The gift that keeps on giving! Yes immunotherapy is amazing and has huge promise, but it also comes with big risks — this being one of them. At any point in time my body could see itself (instead of the cancer) as the enemy.

I am now on a steroid that is supposed to calm my GI tract, a new anti-diarrheal medication that has less side effects than immodium, and I am back on omeprozole. I can say I actually feel pretty good, but this added a shit ton of drug coordination and number of pills to my daily load. If I don’t time everything just so, the whole day is off and then I worry about how I will feel. I went to my oncologist to talk about this because it was overwhelming. But my schedule is generally this:

6:15am Thyroid medication (remember immunotherapy killed my thyroid): 1 pill

6:45am omeprozole: 1 pill

7:30am breakfast (has to be timed just right with the thyroid med and the omeprazole)

8:30am abemaciclib: 3 pills

10:00am steroids and anti-diarrheal: 4 pills

8:30pm abemaciclib and anastrozole: 4 pills

Bedtime: anything I need for sleeping because steroids.

Thats a minimum of 13 pills everyday. I am a person that before cancer took nothing, so that’s a huge jump for me. But now that I have a schedule it’s mostly manageable. The pills added to deal with the GI stuff are hopefully not in my treatment plan indefinitely, but for now there is no end in sight. The steroids take 6-8 weeks to really show an effect. I am coming up on week 6 with them so hopefully my most recent scans will show some improvement on the inflammation in my small intestine and stomach. Once the inflammation is calmed down I will taper off of the omeprozole and see how my gut feels.

If y’all know anything about me, it’s that gut health is really important to me. I have been interested in healthy gut flora for a long time, so being on all of these medications for my gut feels so bizarre. But I don’t believe that some miracle water, some supplements, enzymes, or probiotics will fix this issue. We needed to hit the reset button and see where that takes us. I’ll keep you in the know about how it goes for me.

And this all takes me to why is the post called “MBC day!”? Well it is because October 13th is the one day out of Breast Cancer Awareness month specifically designated to MBC Awareness. And if I have done my job at all, as a patient and advocate for MBC, you will know this is NOT enough and we need more: more publicity, more knowledge, more research, more funding. My story is just one of the thousands of MBC stories. And my story isn’t pink or pretty or “Rah Rah for your Ta Ta’s” (yes I have seen this statement made). We need real funds and real research to find a cure for breast cancer. Early stage breast cancer doesn’t have a cure. Yup I said that. Here’s my reasoning: early stage breast cancer doesn’t have a cure because breast cancer as a whole doesn’t have a cure. If you have MBC it is most certainly a death sentence (average life expectancy is 3-5 years after diagnosis). And if there isn’t a cure for MBC there isn’t a cure for breast cancer. Find a cure for MBC and we can say there is a cure for breast cancer. So for those women diagnosed with MBC right from the get go (called De-Novo) or for the 30% of us early stagers that will reoccur with MBC please consider donating money to Metavivor. More money to research means more research and progress for a cure.

Tonight the #lightUpMBC program is happening at 8pm EST. You should have it on and tune in on Facebook Live.

I’m two years into this chapter and I am never giving up on getting more for MBC because even if I am doing well, there are many folks out there that aren’t. I have lost 5 friends in the last 12 months from MBC. Keep fighting the good fight my friends! I can’t do any of this without your support.

The first set back

Since the last update, I have had 2 infusions bringing me to a grand total of 22 so far. Unlike early-stage breast cancer I don’t count down until I am done with treatment, I count up — the higher the number the longer I have been on the treatment line, which means it’s all working!

On Sunday I had my scans. The scanxiety kicked in on Saturday and stuck around until I got the results today.

Let’s get down to business: the cancer is still very small and stable. YAY! That’s always good and welcome news! Seriously, as soon as I hear “your scans look good” I am at ease. But as the title of this post says, I have received news of my first set back. I didn’t get my 23rd infusion today. I am still processing it all.

At my last set of scans, we saw some inflammation in my right lung. This inflammation is called pneumonitis, or in radiology speak it is called ground-glass opacity. The hope was that with time the pneumonitis would shrink or at the very least not grow in size. The scan results I had today showed growth. What does that mean for treatment? For today it means no infusion. I am on two drugs that are shown to have a lung inflammation as a potential risk. We don’t know which one is causing the inflammation, so Dr. Tolaney wants to stop the most likely culprit (pembro) for a period of time. The pneumonitis can be fast-acting and fatal if not addressed appropriately. In fact, one person in my clinical trial has died from pneumonitis recently. My small trial. Yikes! Dr. Tolaney is acting cautiously by suggesting I take a break from the pembro. I trust her judgment. She works with both of my trial drugs regularly and generally has a good intuition about these types of things.

In the meantime, I will still be on abemaciclib twice daily, and I am still in the trial. And in nine weeks we will rescan and see how that ground-glass opacity looks in the images. If there is a reduction of the pneumonitis, then I can resume pembro, maybe. You see, both drugs can cause inflammation on their own, but together they are causing more frequent rates of inflammation over time. So there is a possibility that the two are just not compatible for the long term. This is what clinical trials are for; so that we can learn about these types of interactions.

As of right now, I am asymptomatic, sort of. This just means I am breathing fine! In fact, I went cross-country skiing two weeks ago and felt great! I have a lingering cough from a cold virus I had at the start of the year. The cough could still be a result of the cold, or it could be a side effect of the inflammation. In the next nine weeks, if the cough doesn’t extinguish itself, it’s likely from the inflammation. If the cough persists or gets worse, or if I find myself in a situation where I am having trouble breathing, I will get scanned before the nine-week mark and we will proceed based on what those images show.

I always leave my oncology office with hope and a plan. Even today I left Dana Farber reminding myself that this isn’t terrible because this isn’t a progression of cancer. All in all, I am doing pretty good. Hopeful that we caught the inflammation early enough that I won’t see any more growth and hopeful that I will remain asymptomatic. But as things go, I am reflecting back to my appointment and I can’t help feel the good with the bad. Although my oncologist doesn’t seem alarmed or even worried because we are moving forward with caution, I still feel a bit defeated.

I am so happy that this set back isn’t cancer growing. But I have high hopes for immunotherapy, which is why I want to be on the drug so badly. I think the abemaciclib is likely the drug that is shrinking my tumor sites so much, but I think that if I have a fighting chance of many years without active cancer ahead of me, it will be because of immunotherapy. There is something just magical about the idea that one’s own body could be jump-started to heal itself.

Tonight I am going to give myself permission to be disappointed. And tomorrow I am going to will myself back into a place of hope and healing.

ef02c3cd-0097-4cf5-b054-c3f210a9c3e8 — From infusion #22, three weeks ago

It’s been a long time

Hi friends! It’s been a while since I last posted and I hope you haven’t missed me too much 😉 Since April, not a ton has happened on the cancer front, and with that, I stepped back a bit and just focused on life. So what have I been up to you ask?

We went to the mountains of Maine for April vacation (thank you to friends for letting us borrow your condo). That was a very welcome vacation. Sometimes just a lazy few days away from home is what I need to recharge. No laundry, no major cleaning, no plan…just a few days to sit in front of the fire to read, play games, go bowling, and venture out to grab a bite to eat. It was forced relaxation at it’s finest!

57791598931__18413708-15a1-4e87-94e5-30688490530d — Reading, tea, fire

Both kids started up with spring sports. It has been so fun to see them practice new skills and work on sportsmanship. Four (nope five) out of seven days are sprinkled with sports practices and games. Spring is always a busy time for us, but it is an enjoyable time as we emerge from our winter hibernation to play in the sunshine.

I went to a breast cancer camp a couple of weekends ago. I went with three of my best NH cancer buddies. We road tripped down to the Poconos on a Friday and home again on Sunday. It was a quick trip, but we talked about everything under the sun, listened to a bunch of true crime podcasts, and danced our butts off at a radical flower power party on Saturday night.

In cancerland things have been going pretty well. Today I got my 10th (TENTH!!!) infusion of pembrolizumab, and I am starting my 10th cycle of abemaciclib and anastrozole. I have been on (this) my first line of treatment now for seven months. That feels really amazing and exciting to say out loud. The great news is that with every scan there is less and less tumor to measure.

This last Sunday I had scans, and per the usual, I was an anxious mess. When I started this chapter of my story, I put this arbitrary timeline on my experience that I wanted to reach one year on this line of treatment (I mean I want much longer, but not a minute shorter). So with each cycle, I am crossing fingers, toes, legs, positive vibing as best as I can, and praying that I won’t hear the word ‘progression’ from my oncology team. This week I got good results again: a teeny tiny bit more shrinkage! YESSSSSS!! **Insert major sigh of relief**

There continues to be sclerosis in my bones. Which if you remember, with all things considered, since things are shrinking elsewhere we are assuming sclerosis means healing. Sometimes healing can be painful; sometimes, it feels like nothing. I have been experiencing pretty awful lower back pain for a week or so in my left iliac crest, and this is one place that my CT shows increased sclerosis. My NP spoke with the radiologist, and they said, for now, they are ruling the pain as sclerosis due to healing. If the pain doesn’t clear up or it gets worse in the next few weeks, I will need to go back in for more imaging, but for now, we celebrate what is likely healing.

At each appointment, we go through my side effects of the medication. As always, gastrointestinal issues still plague me. Cycle eight was actually really well tolerated, and I felt decent for that cycle, but quickly that changed with cycle nine. Without going into significant detail, let’s just say I was in the bathroom a lot. My team monitors my output very closely, and if things get too severe, I have to take a dose reduction of my abemaciclib. Today my NP and research nurse (under the guidance of my oncologist) decided that instead of dose reducing (which I REALLY don’t want to do), they want me to take a half dose of Imodium, every other or every day. I hate taking Imodium, but if that means being able to remain on the highest dose of abema, I’ll do it. **Grumble grumble**

That’s about it for now folks! Andrew and I are taking a short trip to NYC this weekend and leaving the kids behind with my mother in law ❤ And then at the end of June all four of us will be departing on a trip for the PNW to visit family.

Wishing you all the very best final weeks of Spring!

Colonoscopy

I met with the gastrointestinal doc last week. He was so nice and excited to talk about my colon. He showed me the CT images and explained why my small intestine looked concerning. His next step suggestion: colonoscopy. Oh yeah.

The majority of the immune system is housed in our guts. The immune system is delicate and can easily become inflamed when something isn’t quite right. We need to find out if the inflammation that is seen on the CT scan is caused by the immunotherapy drugs. If the immunotherapy drugs are causing the inflamation we need to treat the inflammation with steroids so that my immune system doesn’t start attacking itself to heal.

They want to take some biopsy samples from the point at which the small and large intestine meet. This area is often a point of inflammation or infection. If the biopsy reveals there is inflammation in the immune cells that live in my intestine then I will need to hold treatment and do a course of steroids to reduce inflammation and heal my gut. I am pretty nervous about withholding treatment and going on steroids. I hope we find no inflamed immune cells and that I can just keep dealing with the daily GI issues I have without the need to stop treatment. Really neither option is a great option, but dealing with what my new normal is seems much better than putting a pause on treatment.

The colonoscopy is happening tomorrow (Wednesday). Biopsy results should be back no later than early next. Will keep you updated on what we find out!