Tag: abemaciclib

Keep it up: an update, reminisce with me, and an announcement

Tomorrow I meet with my team virtually. I have already had my blood draw this week and tomorrow I’ll be able to see the faces of my oncology nurse practitioner and my research nurse on a computer screen from the comfort of my bedroom. I’ll get the results of my blood work and we will discuss all things cancer and a few things not cancer.

That is one silver lining of the life and times of COVID — less time on the road to Boston or in Dana Farber and more time at home with my family. I love seeing my team in person, but I also love the convenience of doing virtual visits. We are now in a nice routine: scans and then one visit in person, three weeks later a virtual visit, three weeks later an in person visit, three weeks later a virtual visit, and then three weeks later we cycle through again with scans.

Cancerland has been decent lately. I’m doing well. Still showing no evidence of active disease and feeling so grateful for that everyday. I have been spending time enjoying winter. Yes, I am actually enjoying being outside in the cold! I have been cross country skiing and have been playing the role of lodge mom, without the lodge, on the mountain while my kids and husband have been enjoying downhill skiing/snowboarding. I have hosted a couple of socially distant and small bonfires at my house too.

XC skiing with kids at Powder Major Farm
XC skiing with the kids at Powder Major Farm

The side effects from my medications have been taking their toll lately though. One of meds causes my blood counts to be low. This looks like a low absolute neutrophil count and the result of that for me is mouth sores and fatigue. Also, my joints, back, and neck have been unbearably painful at times. I am told that staying active is the best way to help mitigate aches and pains, but it sure is hard to want to be active when the result of said activity is a sore body. Lucky, I am rarely in pain while doing my favorite activities, it’s always afterwards when I am trying to relax that feels the worst. So maybe the solution is to never stop moving 😉 A bulged disc in my neck and some pain in my wrist are causing me discomfort as I write this, but it’s like a steady simmer of a 5 out of 10 which isn’t bad all things considered.

The AnaOno stage before the show began

I was reminiscing last week as I realized it has been a year since I was in NYC for Fashion Week. I attended the AnaOno show that raises money for Metavivor. It was empowering and fun to see. I can’t wait to go again next year, when all of this COVID business is hopefully looking a little less pandemic-y.

Recently I also got the opportunity to share my MBC story with a woman named Amy from 4G Clinical. It’s a neat organization that’s trying to connect clinical trials and meds to patients in a faster more efficient manner. You can see my story here on the 4G Clinical blog page.

One more exciting thing to announce! I have my first COVID vaccine scheduled for next month. I cannot wait, yet I am nervous too. Both feelings. I hope it means I get to hug my friends again and see my parents and siblings very soon. And I hope it means travel. Even this introverted, homebody needs people and to see the world again.

Keep doing the hard things. There is a light at the end of the tunnel.

UPDATE 2/18: Since I wrote the above yesterday I have met with my oncology team. My thyroid numbers are still off so we are adjusting (lowering) my dose of synthroid. My neutrophils dropped even lower but I can still continue with the meds for another 3 weeks. I have no more wiggle room though — if I drop any more points I will need to take a break from my meds. I am trying to get them up but it’s proving difficult. And lastly I told my oncologist about a dizzy episode I had the other day. Sounds like vertigo. What a terrible feeling! I just had a brain MRI in December so I am good on that front for now, but if vertigo happens again, it’s back in for another look into my head.

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.

Local blood draw! So many tests!

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.

Drinking my colonoscopy prep. Yuck!

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.