My Breast Cancer Journey Part 35: My Twin Sister’s 12th T-DM1 Infusion & Oncology Update!

Here is my twin sister and her husband waiting to see her oncologist to talk through the rest of her breast cancer treatment plan!

This blog post is the 35th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

My twin sister traveled down to Mayo Clinic in Rochester with her husband yesterday for her 12th infusion of T-DM1/Kadcyla and now she’s 85.7% of the way done with her post-operative chemotherapy regimen!

Here are a few highlights from their visit including praises and new prayer requests for us at this moment in time (full details follow in the blog post below)–thank you so much again for your prayers for us as we travel this journey together!:

  • Praise!: My twin sister is 85.7% of the way done with her post-operative chemotherapy regimen of T-DM1/KadcylaHer side effects have been minimal, especially compared to what she experienced after her neoadjuvant chemotherapy in 2019 and early 2020. She has headaches and a bit of nausea for about a week after each of her infusions of T-DM1, but that is small potatoes compared to what she’s been through and we hope and pray and trust this is the last time she ever has to do chemotherapy EVER!!! 😀 Prayer requests for her would be that her side effects continually improve and are manageable after each of her 2 remaining chemo infusions and that her corneal cysts would miraculously disappear even now!
  • Prayer request!: My twin sister’s corneal cysts that developed last year get a bit worse for the week after each of her T-DM1 infusions. But we’re asking for prayers that her microcystic edema will go away now or after her T-DM1 treatment is complete in a month or so! She can still see, which is a huge praise, and she only has 2 infusions of chemotherapy left!
  • Praise!: My twin sister had an echocardiogram to check on her heart health and everything is looking good! T-DM1 has impacts on the left ventricle in particular and her left ventricle looks a-okay so we are very grateful for that!
  • Prayer request!: My baby sister is heading into the next steps of her preventative breast cancer screening journey at age 26: Her 6-month follow-up MRI is taking place at Mayo Rochester next Wednesday, January 13th, to follow up on her baseline preventative breast cancer screening that began last summer! We are asking for prayers that they find absolutely nothing suspicious on this second baseline preventative scan and that she’s cleared with a green light! You can read all about her journey that started last summer in the blog post at this link.
Here is my twin sister knocking out her 12th infusion of T-DM1 at Mayo Rochester!!!

My twin sister’s 12th infusion of T-DM1/Kadcyla: Only 2 left!!!

My twin sister knocked out her 12th infusion of T-DM1 / Kadcyla without a reaction of any kind, had a nurse that was excellent at inserting her IV, and was in and out in just over 30 minutes of infusion time!

We do not take these victories for granted and are so thankful for the excellent care she’s received on her chemo journey at Mayo Rochester!

“I’m totally over getting chemotherapy infusions, but it’s going to be weird when this is all done,” she told me yesterday. “It’s been really nice to know that I’m able to go there and get the chemo done and everyone is taking good care of me.”

“You’re right!, it’s been a huge blessing to know you’ve been taken such good care of on the chemo floor!,” I said. “But the next step of survivorship will be great! They’ll continue taking great care of you at your follow-up appointments every few months!!”

“You’re right,” she said.

But survivorship is a much different journey than breast cancer treatment is, as I’ve written about in my posts about my 6-month and 12-month survivorship consult appointments. It’s a mental game!

Here is the view from my twin sister’s chemotherapy infusion room, she was so excited to have a window room overlooking Mayo’s campus in Rochester!

My twin sister’s update with her oncologist and remaining care plan!

My twin sister had an excellent appointment with her oncologist yesterday and was able to learn more about what the journey looks like from here.

First of all, she had an update with him about her blood levels and heart health so far. She gets a blood test before each infusion to make sure her platelets and neutrophils are where they need to be, and he was pleased with her results yesterday. Apparently, oncologists don’t get concerned unless platelet levels go down to 50, and my twin sister’s are holding steady around 165-70.

By the end of 2021, all of the chemotherapy should be out of her system and everything should be back to normal! My twin sister’s platelets were in the 368 range before chemotherapy started, but according to her oncologist, invasive cancer causes inflammation and increased platelet range, so my twin sister’s “normal” platelet level is more likely around 250. Now they are at 165-170, which he said is just fine.

My twin sister’s echocardiogram came back great as well! T-DM1/Kadcyla can cause problems with the left ventricle, but my twin sister’s heart is functioning at a great level which is a huge praise!!!

This, and the positive levels of everything else, are largely due to my twin sister’s healthy diet and exercise! She’s currently enrolled in a research study at Mayo Clinic about exercise: She’s been working out at least 30 minutes every day and that’s contributing to her well-being and physical health as a breast cancer survivor!

I’m not formally enrolled in the study but I’m doing my best to get 30 minutes of exercise in per day, too. 🙂

Here is my twin sister’s blood test results from yesterday–everything is looking good thanks to healthy diet and exercise!

Second, follow-up appointments after my twin sister’s chemotherapy infusions include appointments with her oncology team every 3 to 6 months. She will either see her chemo nurse practitioner or her oncologist for a physical exam to check for recurrence. Also, at one of these appointments shortly after her chemotherapy treatments are over, they are going to do a one-off blood test to test for any changes in her DNA that could indicate recurrent cancer of any kind. The good news is that, often times with aggressive metastatic breast cancer, a recurrence happens within the first 18 months, and my twin sister’s oncologist isn’t worried about recurrence at all–she is all clear at month 9 since surgery and month 16 since diagnosis!!!

Third, my twin sister’s oncologist said that he looks forward to meeting with my twin sister and her husband at the end of 2021 to continue conversations about family planning! They have 28 eggs in a freezer at a fertility clinic in the city after a successful egg retrieval procedure in fall 2019. Even though my twin sister was one of the less than 1% of patients who ended up in the hospital with ovarian hyperstimulation syndrome which was terrifying, we are all optimistic their attempt to have babies via in vitro fertilization (IVF) in 2022 will be successful!!! God has a plan for their future family and He is good!!!

Fourth, my twin sister’s oncologist is befuddled by her microcystic edema and thinks it could be a result of T-DM1, could be a result of Tamoxifen, or could be the result of a combination of both. He said that, because T-DM1 is so new, he is not sure if it’s one or the other or drugs interplaying together because sometimes endocrine therapy and chemotherapy drugs together have interaction effects. However, he is optimistic the microcystic edema will go away at end of T-DM1 as it appears to be directly correlated with her infusions, and he’s glad she’s going to see eye doctor at Mayo again soon!

Fifth, my twin sister doesn’t need to worry about any sort of long-term side effects of T-DM1/Kadcyla! The only potential side effect her oncologist mentioned was “chemo brain,” but he also said there’s no cognitive test for “chemo brain” that can say “this person lost a few IQ points,” etc.–and, as I’ve written about my cancer survivorship before, I feel dumber now than I did last year, too, and it might just be middle age because I didn’t even go through chemotherapy. Ha, ha! But my twin sister’s oncologist said if she has trouble remembering certain things, she can blame “chemo brain” if she wants. 🙂

Sixth, my twin sister’s oncologist presented my twin sister with counseling resources that Mayo Clinic has: Cancer-focused, cancer survivorship counseling resources that he’s going to connect her with in hopes that would be helpful as she moves forward into survivorship!

We couldn’t publish a post without a photo of Gizmo, my twin sister’s baby Boston Terrier! Our mom, dad, and baby sister babysat him during my twin sister’s infusion yesterday!

Next steps

My twin sister has heard that you can ring a bell when you finish chemotherapy and she also heard she should get a pin to celebrate finishing! So she’s going to ask about that at her last chemo infusion coming up in just over a month. 🙂

Also: Here are some things coming up on the docket that we’d love prayer for and are looking forward to in 2021!:

  • Wednesday, January 13th: My baby sister’s second MRI as part of her baseline preventative breast cancer screening. Her journey started last summer (you can read all about it on this blog post!) and we are so proud of her for going through preventative screening at age 26!
  • Friday, January 29thMy twin sister’s 13th infusion of T-DM1 at Mayo Clinic Rochester
  • Friday, February 19th: MY TWIN SISTER’S LAST INFUSION OF T-DM1 at Mayo Clinic Rochester!!!!!!! YAY!!!!!!!!!!
  • Monday, March 8th: Dermatology appointment to remove and test a “mildly atypical” spot on my twin sister’s back (the dermatologist doesn’t think it’s skin cancer but just wants to make sure!)
  • Friday, March 12th: My follow-up with my plastic surgeon to ensure that I’m continuing to heal properly and there are no signs of capsular contracture; my twin sister’s one-year follow-up with her plastic surgeon!

Thank you so much for your continued prayers for our health and healing, and for my baby sister’s preventative breast cancer screening journey that continues next week!!

God is good!!!

This blog post is the 35th in a series about my (and twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. Here is a list of all of the posts written about our journey at Mayo Clinic’s Breast Clinic in Rochester, Minnesota, to date. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

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