September 2, 2020 And So It Begins...
Yesterday, Jamie and I began a new chapter. It was one we had planned for, but didn’t think we would write it so soon. As we first pulled into the campus of the Mayo Clinic, I knew this would be my home for the duration, medically speaking.
The Mayo Clinic in itself is very impressive. It is a large campus consisting of many buildings, parking lots, parking garages, and even hotels. With very detailed instructions, we found ourselves at the right building waiting in line to be admitted after Covid screening. I am very thankful that they allow visitors, as I would not have wanted this experience alone.
I was fascinated. It was large, but welcoming – soft and not clinical. The building we were in almost felt like a very large hotel. They funneled us to a large check-in counter with many nurses. Think of a very large hotel check-in, similar to the Palazzo in Las Vegas. The wait was almost seconds, they checked me in, verified personal information and had me sit back down in a very large socially distanced waiting room.
It was a mere minute before I was called back to a nurse in an office cubicle with all of the necessary vital equipment. There must have been 10 or more of those same offices. She quickly reviewed by health record, history, took my blood pressure, oxygen levels, weight, and temperature. Once she had my vitals entered, she sent me upstairs to the Breast Health Floor.
I will pause for a moment. This was super efficient. This triage and bank of nurses doing this work for ALL doctors on all floors, regardless of the specialty. To top it off, everyone that I encountered was very caring, upbeat, and quick!
Once we entered the Breast Health section on the 2nd floor, it was a quick check-in, and before I knew it Jamie and I were in a room. It had all of the typical medical equipment and nice long couch for sitting. This is where we met the first doctor. He is actually a Fellow at Mayo Clinic working under my new oncologist. He was very patient. He had clearly studied my chart and new my situation. He carefully and methodically laid out treatment options. These were options that he and my “new” oncologist had discussed. There were many!
Well, in the HER2+ world, there has and continues to be much research. Doctors all around have said to me, “having HER2+ is a good thing”. In a cancer world, that is supposed to be comforting. Truthfully, I would rather have none of it. But if I have to have it, at least it is positive (sarcastic smirk). No negativity for me!
I will not go through all of the options presented. That would be far too tedious and I’m sure it would add to the bore factor. I will focus on 2. Believe it or not, one of the treatments that should be known is Observation. I choked when he said it. It would basically entail us doing NOTHING except getting scans every three months. We would be waiting for the next tumor to present itself and join the party. It could be in the form of another brain lesion, a lesion on my liver, in my lungs, or in my bones. NO THANK YOU!
Seriously, we could do nothing. The thought of doing nothing is a very risky proposition for a mother of a thriving 10 year old and a loving husband of 24 years of marriage. I couldn’t imagine worrying that every ache, pain, and creak could be cancer visiting me again. Scananxiety is hard enough without rolling the dice and worry about the headache you had 2 weeks ago. Right??
Now, let be clear, they were NOT advocating that choice. However, they were certainly laying it out as an option. There are people who would rather not face the side effects of the chemo drugs and have a quality of life. I get that, but I would rather have a LONG life. I can manage the side effects. And, I am certain that I will find a way to have a glorious quality of life.
So, let’s focus on the treatment plan ahead. It is rather exciting in a geeky way. One of the benefits of the Mayo Clinic, is the availability of clinical trials. Mayo is a research hospital, so they are very intune with new treatments. In fact, the treatment that they are proposing was just approved by the FDA during a clinical trial. The results are quite promising.
The treatment that they would like me to embark on includes a 3 drug punch. It will be a combination of Herceptin, Xeloda, and Tukysa. I’ve included details from the article for all you wildly interested in Cancer Doctor speak! You can even click on the link!
FDA Approves Tucatinib for HER2+ Breast Cancer
The FDA has approved tucatinib (Tukysa) for use in combination with trastuzumab (Herceptin) and capecitabine (Xeloda) for the treatment of patients with unresectable locally advanced or metastatic HER2-positive breast cancer, including patients with brain metastases, following at least 1 prior anti-HER2-based regimen in the metastatic setting.1
The approval is based on data from the phase II HER2CLIMB trial, which were presented at the 2019 San Antonio Breast Cancer Symposium (SABCS).2,3 The results showed that the tucatinib triplet reduced the risk of death by 34% compared with trastuzumab and capecitabine alone in heavily pretreated patients with unresectable locally advanced or metastatic HER2-positive breast cancer.
I will take Tukysa daily, Xeloda daily (1 week on, one week off), and Herceptin once every three weeks subcutaneously. (Aren’t you impressed with my vocabulary?!?). All that means is that I go the the Mayo Infusion center 1 day every three weeks for a shot in my thigh of Herceptin. It is a shot administered by an Infusion Nurse – and it takes 15 minutes to give, as she has to slowly release it. I know….fun, fun, fun! BUT it is NOT a port. And clearly from my last posts, I’m really good at getting stuck by needles.
That is the best news – I do not need to have a new port!!! That is such great news and a relief! Ports are a wonderful conduit, and I would certainly need and happily get it if I needed infusions in my veins, so I am super happy that I get to take the medicine via shots – subcutaneously.
When do I start? Well, it is a matter of the drugs arriving on my doorstep. Apparently, you can’t visit your local pharmacy for Chemo drugs. They let you get all kinds of mind-altering narcotics, but they draw the line on chemo (that was inserted sarcastic chemo humor). They have to be delivered from a “special” pharmacy. The orders have been placed, so as soon as they arrive, I will begin my regimen.
For the Herceptin (the once every three weeks shot), I have to go to Mayo for an echocardiogram and visit the infusion nurse. We are doing that next week, so that could start as early as next week, but I am uncertain. Oh, and along with my Scans (Brain MRI and PET Scan) every three months, I will have to get an echocardiogram every three months. Apparently, Herceptin is not good for “muscles”, meaning your heart! At least they are watching it – right?!
This post has been quite long, so thank you for indulging me on the doctor speak.
On a more happier note, Mason started school on Monday. He seems to like it. Each day is getting better and better as he meets new friends and immerses himself in his new school and meeting more kids in the neighborhood. Allegedly, they announced “no homework” for week 1, so he is super excited. It is hard to wrap my arms around the fact that he is in 5th Grade! I’ve included a picture as proof! And, yes, I am NOT one of those Mom’s who has the cool looking back to school sign. Sigh…this one is made by yours truly with a Sharpie, one that is losing ink. It works just fine.
Jamie is relieved about Mayo. We are both bittersweet about not seeing my Atlanta Oncologist, but hey – this is why we moved to Ponte Vedra. It certainly will be much easier traveling 15 minutes for a doc visit versus 6 hours. The Atlanta hotel scene will totally miss me, but I’m sure I will be back with business related travel….someday….post Covid.
We had close friends visit us last weekend, which was awesome! It was great to hang out, laugh, and just be together. It was good for Jamie. As a bonus, we have another set of friends visiting this week. We are blessed.
And since this post is so darn long and meandering, I couldn’t help but post a pictorial on storytelling. I totally stole this from my dear friends sister who posted it on Facebook. (Thank you Susann and Roz). I couldn’t resist as it describes me to a T. It made me laugh out loud.
I will update again as I begin the new drugs and my new relationship with the Infusion Center at Mayo. Thank you all for your love, hugs, and prayers! They warm my heart and soul!
Oh, and as I started, “And so it begins”…here comes Plan B!