Tomorrow I’ll be getting another dose of Eribulin, which will wrap up cycle 2. I will have one more cycle before getting scans. As blood work and liver pain has improved, I am fairly confident that the scans will show improvement in my liver as well. I’m not out of the woods just yet, but things are on the right track. Just gotta cross my fingers that the LMD has remained stable during all of this.
After scans, I plan on asking my team if I can try again with qualifying for the clinical trial that I want to participate in. That’s always been my goal! Just as an FYI, the clinical trial I want to participate in would put me back on a drug categorized as an antibody drug conjugate (ADC). I have been on two ADCs (Enhertu and Todelvy/Saci) in the last year. Although I haven’t been an exceptional responder to these drugs, I have gotten an average time on them and have tolerated them fairly well, especially the Saci. The paper I recently had published emphasized the importance of studying and understanding the patient’s experience and why research needs to continue.
Speaking of which, my desire to participate in research/clinical trials has led me to being asked to participate in an upcoming event. I was asked to be a patient voice for a panel that will do a “flash” ask for donations for MBC research, specifically targeted at ADC research. My perspective as a patient that has experience with these drugs will hopefully bring a personal connection to research and hope for the future, and ultimately some large donations in for funding this research.
I will come back soon and report how the event went. XO
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 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.
Hannah in CancerLand 