This blog post is the twelfth in a series about my (and now, my twin sister's) preventative breast cancer screening journey that began when we were 30 years old in July 2019. The first post is about my first mammogram ever; the second post is about my consultation at Mayo Clinic's Breast Clinic; the third post is about my stereotactic core biopsy at Mayo Clinic's Breast Clinic; the fourth post is about my diagnosis with "Stage 0" DCIS breast cancer; the fifth post is about my in-person DCIS diagnosis at Mayo Clinic, beginning thoughts on my surgery timeline, and discovering that my twin sister might have breast cancer, too; the sixth post is about my twin sister's invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate "suspicious" spots on my right breast and liver; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the ninth post is about preparing for my twin sister's chemotherapy appointments, including details about her egg banking procedure in the city; the tenth post is a summary of my sister's ovarian hyperstimulation syndrome and visit to the emergency room; and the eleventh post is a summary of my double mastectomy surgery plan scheduled to occur on December 3rd, 2019 at Mayo Clinic's Methodist Campus Hospital in Rochester. To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.
Last Friday, my twin sister--who has stage 2A invasive ductal carcinoma breast cancer--went in for her first chemotherapy infusion at Mayo Clinic in Rochester, Minnesota. Like I've mentioned several times before, Rochester is a bit of a drive for us from the city, but it's worth it because Mayo Clinic is the best. I was out of town with my husband recording a CD at Dark Horse Institute in Nashville, Tennessee (you can learn more about my husband's music in this blog post :)), so I wasn't able to attend this first visit, but my sister and family took detailed notes about the experience that I compiled into this post.
It was a long day for them at Mayo because they had to start off with a bunch of blood labs to make sure she was good to go after an intense two weeks of dealing with ovarian hyperstimulation syndrome (you can read the full story about her experience with that at this link), something that happens to less than 1% of patients who do an egg retrieval or IVF procedure. In summary: Her egg retrieval was successful but then her abdomen and lung tissue filled with fluid and her enzymes and blood levels went all over the place. She had trouble breathing and walking and I thought she might die. But she didn't!
So her oncologist at Mayo Clinic saw her after her symptoms had been settling down for a few days and he recommended they get started with chemotherapy as scheduled. He measured her largest tumor and made a note that it had grown 1cm in size from when he'd last seen her 4 weeks ago. "We are getting started today," he said confidently. So they did! She had a reaction to one of the chemotherapy drugs which was terrifying. But she pulled through in less than 10 minutes and finished the full chemo regimen at full dose! She went home Friday evening after over 12 hours of tests and chemo administration at Mayo and slept well all night Friday. They sent her home with some anti-nausea medicine and a Neulasta patch that administered some medicine into her system on Saturday. On Saturday, she rested. On Sunday, she rested some more. On Monday morning, she felt well enough to go into work which she was so excited about! Some people can't believe she went in to work but she's a lawyer and she loves her job and she plans to go to work for the rest of the week! This is a miracle in and of itself. :)
Here are my sister's detailed notes from her first day of chemotherapy for her invasive breast cancer at Mayo Clinic in Rochester--all of the text from here on out is from her journal entries!:
Preparing for chemotherapy
My first chemo infusion happened on Friday 11.8.19. We weren’t sure we would be able to proceed, as my liver enzymes were sky-high following the “insult” my body took from OHSS during the past week or so. Based on the results of my blood tests on Monday, my internal physician in the city did not want me to start chemotherapy this week but instead wanted me to wait a week for liver enzyme levels to normalize. My oncologist still wanted to see me right away for evaluation and to proceed with treatment, at a smaller dosage if warranted. My fertility doctor in the city did a great job coordinating communication between my internist and oncologist to get everyone on the same page regarding my OHSS, and after my chemo date was pushed back to Friday 11.15.19 on Tuesday it got bumped back to its original date of Friday 11.8.19 the next day when my fertility doctor said she had conferred with my oncologist and did not see any reason to postpone chemotherapy as the OHSS symptoms seemed to be "resolving well."
I did my best to eat healthy and hydrate to get ready to roll on Friday. And, we prayed my liver enzyme levels would get back into normal range so I could get rolling on chemo treatments. I arrived at Mayo Clinic at 7am on Friday 11.8 when my port was accessed for the first time for a blood draw. Then my husband and I met with my oncologist.
Meeting with her oncologist
My oncologist said if my liver enzymes were back to normal, we could get started, but that even if they weren't, we could still get started--just on the HER2+ treatment, which is Herceptin and Progeta. We could also potentially get started on the "big guns"--Taxotere and Carboplatin--in a lower dose than normal. But he really wanted to move forward. In his notes from our meeting:
"Ovarian hyperstimulation syndrome should resolve within 2 weeks...we will proceed with therapy today at full dose."
Meeting with the chemotherapy nurse
After we met with my oncologist, my mom and baby sister arrived for our education visit with a Nurse, at 8:15am, who we found out is a Christian and recently attended a Hillsong conference! She gave us many materials on the 4 drugs I would be taking, and about how I was basically going to be radioactive for the 48 hours following my infusion as my body processed the toxic chemo drugs, after they had done their job. I need to use my own bathroom and clean my own bathroom and wash everything I touch on Sanitary cycle at the end of the 48 hours. Spit, saliva, tears, sweat, and any bodily fluids coming from me would be radioactive! Halfway through our meeting my nurse got my liver enzyme blood work back and paged my oncologist, who confirmed they looked good (AST level had fallen from 63 down to 23 which was in normal range!) My oncologist confirmed to proceed full bore at that point with treatment.
After our meeting with my Nurse I went to the “Chemo floor," which is the 10th floor of the Gonda Building at Mayo Clinic in Rochester. I checked into a room with a big window and a bed! There was a TV with free TV and movies. We first touched base with a Nurse who explained the order of drugs, and how drugs were ordered. After I was evaluated and determined it was safe to proceed with treatment, the order for the drugs was placed to the pharmacy. The pharmacist then prepared all 4 drugs in a sterile environment in a Haz-Mat suit. Then, the drugs were delivered to my room, and 2 separate nurses verified my identity and the dosages. Then they accessed my port and started the infusions.
Order of administration of chemo drugs per protocol was Perjeta (30 min), Herceptin (90 min), Taxotere (60 min), then Carboplatin (30 min). The nurses said the first two drugs were the HER2 therapies, where cold capping was not necessary. I did not have to start getting my cold cap ready until halfway through the Herceptin treatment. Then they plugged me into the Paxman machine and on it went! It felt much like submerging my head into a snow bank for about 5-10min. After that time the temp regulated and I felt OK with the cap on.
My sister signed up for a research trial at Mayo!
I agreed to sign up for a research trial to test heart response to Herceptin. I had an echocardiogram taken of my heart before, and after, Herceptin administration. I will do that again for the next 3 months.
My sister's adverse reaction to her third chemotherapy drug: Taxotere
All drugs went great without incidence until Taxotere (which was administered third) – and I experienced an adverse reaction. I knew Taxotere would be different because the Nurse stood right next to my bed and watched me intently as the drug began to be administered through my port. I also knew it would be intense because the first two drugs were referred to as "warm ups" and I had to take steroids the day before, day of and day after the treatment. The nurse said "don't mind me, I just want to keep a close eye on you during this one as it has been known to cause a reaction or fever, and if it does, this room will get pretty busy!" I passed the time discussing upcoming breast surgery including nipple tattoos with my dad, husband and the nurse, for about ten (10) minutes, until I immediately felt intense heartburn starting in my abdomen and coming up into my throat. Followed by intense pelvic pain and lower back pain. And a raging headache. I could see the skin on my forearms flush a bright red.
Before I could open my mouth to say anything, the Nurse immediately hit the emergency call light and my room was immediately filled with the "acute" team including a NP and about 5 other nurses asking my symptoms and administering Pepcid and Benadryl IV to bring me back to baseline. They said it only took a couple of minutes to bounce back. I heard a nurse say to my husband, "she rebounded from that reaction like a champ!" and my husband said, "Well, she is a litigator after all, so compared to what happens in Court this is nothing."
After I came down from my fever spike, into normal range, one of the nurses said "Congratulations! You've now qualified yourself for every pre-drug we have for Taxotere!! (referred to by the nurses as "Tater.") (Benadryl and Tylenol are standard.).
In my husband's words: I wanted to let everyone know that my wife rocked her first round of chemotherapy yesterday. She had 4 different chemo drugs administered over 7 hours or so. 3 of the 4 drugs went well, with one causing a pretty serious reaction that led to the emergency button being pressed and 8 other nurses rushing into our room. It was probably the scariest moment of my life. She remained calm, somehow... They stopped that chemo drug immediately and gave other meds to bring her back to “baseline.” After consulting with the oncologist, they resumed the same chemo drug & she made it through. She’s tougher than nails, but we certainly appreciate everyone’s prayers.
Doctor notes from my sister's adverse reaction to Taxotere
"Immediately at the onset of symptoms the docetaxel infusion was discontinued and hypersensitivity protocol was initiated. The patient received 20 mg of Pepcid and 50 mg of Benadryl IV. Her vital signs remained stable throughout the reaction and her symptoms resolved within 5 minutes after the onset. Primary oncology team was notified and the decision was made to re-challenge. The patient was able to re-start the treatment and completed it without further incidence."
The very end of the chemo regimen!
Before they could resume treatment after my reaction, they paged my oncologist who approved a "re-challenge" at the full dose. I also wore cold gloves and booties to decrease the chance of developing neuropathy from the drug. They re-started the drug and I finished administration for the 60 minutes.
I felt very woozy from the Benadryl and very cold from the gloves and booties but confident I could get through the last drug, Carboplatin, for 30 minutes. The main side effect from Carboplatin is a metallic taste, but I did not experience any of that.
For 90 minutes after Carboplatin, I had to sit with the cold cap on to complete scalp cooling. After that, my dad and my husband helped unhook the machine and I waited for my scalp to thaw for a few minutes. Then we carefully removed the cold cap, packed it up in my Paxman pack, I walked out of Mayo Clinic and my husband drove me home.
My sister will have 6 total infusions of chemotherapy--one every three weeks--over 4.5 months. So this will happen 5 more times at dates approx. 3 weeks apart. I will keep everyone updated on how those all go! Right now, her next chemo date is Wednesday, November 27th. Thank you for your prayers for her complete healing--we are confident she'll have a "complete pathological response" at the time of her double mastectomy in April 2020!
This blog post is the twelfth in a series about my (and now, my twin sister's) preventative breast cancer screening journey that began in July 2019. The first post is about my first mammogram ever; the second post is about my consultation at Mayo Clinic's Breast Clinic; the third post is about my stereotactic core biopsy at Mayo Clinic's Breast Clinic; the fourth post is about my diagnosis with "Stage 0" DCIS breast cancer; the fifth post is about my in-person DCIS diagnosis at Mayo Clinic, beginning thoughts on my surgery timeline, and discovering that my twin sister might have breast cancer, too; the sixth post is about my twin sister's invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the seventh post is about my breast MRI and two ultrasounds to investigate "suspicious" spots on my right breast and liver; the eighth post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the ninth post is about preparing for my twin sister's chemotherapy appointments at Mayo Clinic, including details about her egg banking procedure; the tenth post is a summary of my sister's ovarian hyperstimulation syndrome and visit to the emergency room; and the eleventh post is a summary of my double mastectomy surgery plan scheduled to occur on December 3rd, 2019 at Mayo Clinic's Methodist Campus Hospital in Rochester. To keep tabs on new posts, sign up for the "A Daily Miracle" email list at this link.