My Breast Cancer Journey Part 22: My Twin Sister's First Infusion of T-DM1 at Mayo Clinic (Breast cancer chemotherapy-lite)

My Breast Cancer Journey Part 22: My Twin Sister's First Infusion of T-DM1 at Mayo Clinic (Breast cancer chemotherapy-lite)
Here is my twin sister with her husband all ready to go into her first infusion of TDM1 at Mayo Clinic Rochester!!

This blog post is the 22nd in a series about my (and my twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. The 1st post is about my first mammogram ever; the 2nd post is about my consultation at Mayo Clinic’s Breast Clinic; the 3rd post is about my stereotactic core biopsy at Mayo Clinic’s Breast Clinic; the 4th post is about my diagnosis with “Stage 0” DCIS breast cancer; the 5th 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 6th post is about my twin sister’s invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the 7th post is about my breast MRI and two ultrasounds to investigate “suspicious” spots on my right breast and liver; the 8th post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the 9th post is about preparing for my twin sister’s chemotherapy appointments, including details about her egg banking procedure in the city; the 10th post is a summary of my sister’s ovarian hyperstimulation syndrome and visit to the emergency room; the 11th 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 Rochesterthe 12th post is about my twin sister’s first chemotherapy infusion at Mayo Clinic; the 13th post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the 14th post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; the 15th post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester; the 16th post is about my one-month-post-surgical-follow-up appointment and preventative baseline ovarian cancer screenings at Mayo Clinic; the 17th post is about a suspicious rash I developed a month after my surgery called “pigmented purpura,” my consultation with a gynecological oncologist about ovarian cancer prevention, and my sister’s fifth chemotherapy infusion; the 18th post is about the end of my twin sister’s six neoadjuvant chemotherapy infusions (TCHP); the 19th post was about my twin sister’s double mastectomy and reconstructive surgery plan (amid the global outbreak of COVID19); the 20th post was about my twin sister’s double mastectomy with immediate reconstruction; and the 21st post was about my twin sister’s surgical recovery. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

mayo-clinic-tdm

Here is my sister’s schedule from this Friday’s visit to Mayo!

My twin sister went down to Mayo Clinic in Rochester yesterday for her first round of the new “chemo lite” drug called “TDM1.” Praise the Lord that she did not have any adverse reactions to the infusion!! She also had blood labs, an echocardiogram to check on her heart health, and updates with her oncologist and plastic surgeon. She’s home resting now for the weekend with her husband, and has 13 infusions of TDM1 to go over the next 10 months, in addition to a daily dose of Tamoxifen, a drug to keep estrogen levels low which lowers the risk of estrogen-positive cancer returning. Thank you so much for your continued prayers for 1) No reactions to these new chemo drugs 2) 100% effectiveness of the treatment so her cancer never ever comes back!! 3) Side effects to be minimal / nonexistent!! 

Here is her original Facebook post summarizing her visit to Mayo this week!:

“Excited faces behind the masks because I am officially *Cancer Free* during our first visit back to Mayo Clinic since my surgery on March 20th!! (Face masks are now required for all patients at all times and only one visitor is allowed due to COVID19!!) The reason for our return to the Mayo is that although my neoadjuvant (pre-surgery) chemotherapy was extremely effective in destroying the majority of my HER2+ breast cancer, there was a very small amount remaining at time of surgery (which was removed with clear margins!) This means in addition to a daily dose of Tamoxifen, I will now transition to “Phase 3” of treatment: 14 rounds of an adjuvant (post-surgery) chemotherapy called TDM1, a newly approved drug that has shown extremely promising results in preventing recurrence of HER2+ breast cancer (the most aggressive type which also makes up 20% of all breast cancer diagnoses.) We are calling this “chemo lite” as the side effects will not be as bad as what I previously went through, and, I am told my hair will keep growing back in! My first Infusion will be tomorrow, Friday May 22nd, and every 3 weeks after that. All in all there is much to be thankful for – particularly how far we’ve come since my diagnosis last October! – and although there are a few months of treatment left to go I know God will see us through!”

mayo-clinic-pokemon-go

Every time we go to Mayo Clinic, we have a blast playing Pokémon GO! At this visit, Larvitar found his way into one of my sister’s exam rooms in the Gonda Building.

Healing and recovery updates

Here are a few key updates from my twin sister’s update with her oncology / chemotherapy team:

  • Heart health / cardiovascular endurance: Due to the effects of chemotherapy on the heart, it can take up to twice as long as she was on chemo for her heart rate and cardiovascular endurance to get back to normal. Her heart looks great from the scans!, but won’t be 100% until 2021. Her chemo team let her know that some patients are on TDM1 doing cross fit competitions, but that my sister should go at her own pace and listen to her body!
  • Neuropathy (tingling/numbness in fingers and toes): My sister has had a bit of this as a side effect of chemotherapy, especially in her left toes, but the tingling and numbness improved since the end of her TCHP chemotherapy regimen in March, and the neuropathy should continue to improve over time!
  • Prevention of side effects / adverse reactions: My twin sister had Benadryl and Zofran before her first infusion of TDM1 to decrease the possibility of a physical reaction to the chemotherapy! She didn’t have a reaction so that is great news!!
mayo-clinic-falcon-program

Here is a livestream broadcast on my sister’s chemotherapy room TV screen of the falcons on the roof of the buildings at Mayo Clinic Rochester!

Her first chemo infusion was 90 minutes, and they needed to stick around 90 minutes afterward to be observed. She did great, so next time and going forward, she will only need to have a 30 minute infusion and 30 minute observation period! Woohoo! During chemotherapy, she and her husband kept themselves entertained by playing Pokémon GO and watching a live video stream of a momma falcon and her babies that are part of the Mayo Clinic Peregrine Falcon Program on the roof of Mayo Clinic in downtown Rochester (pictured above). According to the Mayo Clinic website: “Celebrating 33 Years since 1987, falcons have found a home on top of the tall buildings of Mayo Clinic in Rochester, Minnesota.”

mayo-clinic-rochester-breast-cancer-chemotherapy-tdm1

Here is my twin sister and her husband during her first chemotherapy infusion of TDM1! She did great!

And here are a few updates from my twin sister’s meeting with her plastic surgery team:

  • There was a stitch sticking out: She had a tiny bit of a stitch that was protruding from her left incision, so it was snipped off. She didn’t feel the stitch until the plastic surgical team pointed it out, so she should stay out of lake water until it’s fully healed and not visible. She will see her plastic surgery team again in one month for her three month follow up to make sure everything is healing as it should!
  • No physical restrictions at this point: Everything looks great, and there are no physical restrictions for her at this point! Like her oncology team said: “Listen to your body!”
  • A marble-sized lump on the left side of her chest: My twin sister thought there may be a marble-sized lump on the left side of her chest, which was scary. So she had the plastic surgery team and her oncologist take a look. They said it was nothing to worry about as it was only the edge of the implant (sometimes the edges of the implant(s) feel like bumps or lumps). They will take another look at it next month to ensure there have been no changes!

mayo-clinic-covid-testing-rochester

Here is the drive-thru COVID testing center sponsored by Mayo Clinic in New Prague, MN!

covid-drive-through-testing-mayo-clinic

Here is my sister getting tested for COVID at the Mayo Clinic drive-thru center in New Prague, MN!

COVID19 Testing

My sister will need to be tested for COVID19 before every one of her 14 chemotherapy infusions over the next 10 months. She got tested last weekend at a Mayo Clinic drive-through site and said it “wasn’t that bad” of a test, which is great! Her results came back “no” 24 hours later. 1 down, 13 to go!

joy-over-stress-youversion

Here is one of the YouVersion devotionals I’ve been going through on joy vs. worry!

Turning fear and uncertainty into courage, joy, and strength

Having cancer is terrifying. Going through chemotherapy is scary too, and even worse while COVID19 is ravaging the world! Here are some fears that we’ve dealt with during this season as a family:

  1. My sister (or anyone near her, including her husband who is an essential worker / operations manager at a huge warehouse), coming down with coronavirus
  2. My sister having adverse reactions to or side effects from her chemotherapy infusions
  3. My (or my sister’s) cancer coming back

I’ve done a couple of devotionals and Bible studies this past couple of weeks to address these fears, including:

Ultimately, through all of these lessons, I’ve learned that it’s so important to surrender fear to the Lord by asking Him to turn it into courage, joy, and strength–something He’s more than willing to do for us if we ask!

Next steps

I have my 6-month survivorship consult at Mayo Clinic’s Breast Clinic in Rochester on Friday, June 5th! Lord willing, Drift Dough will be open by then for us to pick up some gluten free donuts in Rochester–but if not, we will hope for the best at some point in the future! Haha.

My twin sister has her three-month surgical follow-up with her plastic surgeon at Mayo Clinic next month to ensure she’s still healing well. She goes back to Mayo Clinic in Rochester for her second infusion of TDM1 on Friday, June 12th.

Thank you again for your prayers–God is good and He is in control!!!

This blog post is the 22nd in a series about my (and my twin sister’s) preventative breast cancer screening journey that began when we were 30 years old in July 2019. The 1st post is about my first mammogram ever; the 2nd post is about my consultation at Mayo Clinic’s Breast Clinic; the 3rd post is about my stereotactic core biopsy at Mayo Clinic’s Breast Clinic; the 4th post is about my diagnosis with “Stage 0” DCIS breast cancer; the 5th 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 6th post is about my twin sister’s invasive ductal carcinoma clinical stage 2A breast cancer diagnosis; the 7th post is about my breast MRI and two ultrasounds to investigate “suspicious” spots on my right breast and liver; the 8th post is about my second DCIS diagnosis following a week of MRIs, ultrasounds, and biopsies at Mayo Clinic; the 9th post is about preparing for my twin sister’s chemotherapy appointments, including details about her egg banking procedure in the city; the 10th post is a summary of my sister’s ovarian hyperstimulation syndrome and visit to the emergency room; the 11th 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 Rochesterthe 12th post is about my twin sister’s first chemotherapy infusion at Mayo Clinic; the 13th post is about foobs, photo shoots and nipple tattoos (my plastic / reconstructive surgery plan); the 14th post is a recap of my successful double mastectomy and immediate direct-to-implant reconstruction operation; the 15th post is about my surgical recovery and day full of follow-up appointments at Mayo Clinic in Rochester; the 16th post is about my one-month-post-surgical-follow-up appointment and preventative baseline ovarian cancer screenings at Mayo Clinic; the 17th post is about a suspicious rash I developed a month after my surgery called “pigmented purpura,” my consultation with a gynecological oncologist about ovarian cancer prevention, and my sister’s fifth chemotherapy infusion; the 18th post is about the end of my twin sister’s six neoadjuvant chemotherapy infusions (TCHP); the 19th post was about my twin sister’s double mastectomy and reconstructive surgery plan (amid the global outbreak of COVID19); the 20th post was about my twin sister’s double mastectomy with immediate reconstruction; and the 21st post was about my twin sister’s surgical recovery. To keep tabs on new posts, sign up for the “A Daily Miracle” email list at this link.

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