My Breast Cancer Journey Part 26: My Twin Sister’s 4th Infusion of T-DM1 & Microcystic Edema

My Breast Cancer Journey Part 26: My Twin Sister’s 4th Infusion of T-DM1 & Microcystic Edema
Here is my twin sister ready to knock out her fourth infusion of TDM1 / Kadcyla at Mayo Clinic in Rochester, MN! Complete with her beating breast cancer "Team Mayo" tshirt and a quilt made for her by a friend!

This blog post is the 26th 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.

First of all, before diving into this post!, we are placing orders for tshirts raising awareness for breast cancer! If you want one for $20, fill out this form! Shirts are $20 and $8 goes directly to support Mayo Clinic’s Breast Clinic in Rochester, Minnesota! My twin sister is showing hers off in the featured photo above!!

Okay, so on to our story!: My twin sister has now completed 4 of her 14 T-DM1  infusions, so she’s 28.5% of the way done with her post-operative chemotherapy regimen! She did great at her infusion. The first question she had was about her white blood cell counts: Every time she gets a chemo infusion, she has to have a blood test first to make sure her levels are high enough to go through with the infusion. The main question this week was whether or not her platelets and neutrophils would be up to the level they needed to be–at her last visit 3 weeks ago, her levels were relatively low, so she was a bit concerned that they may need to postpone this infusion to help the numbers get up to where they needed to be.

Thanks so some healthy eating–she and her husband were intentional about eating lots of leafy greens and high-protein foods this past three weeks!–and exercising (walking outside and on a treadmill and lifting weights in their basement!), she got her numbers up to where they need to be! We’ve also had our Bible study and family and friends praying for her levels and so, thanks to healthy foods and Jesus, she was green-lit for her treatment today WOOHOO!

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As you can see, it’s a miracle!! Based on a healthy diet full of great foods high in protein and iron and vitamins, my twin sister was able to raise her levels of neutrophils and platelets over the last 3 weeks! Take that, CHEMO!!! Also, Thank you JESUS!

The infusion went great! She got to talk with her nurses and technicians all about the Boston Terrier puppy she and her husband are adopting next month (!), which was a highlight. She’s been feeling a bit tired and a little sick the day after her infusions the past couple of infusions, but she is still feeling much better overall than she did after the infusions she had of TCHP before her operation. Also, because her infusion was on a Friday, she’ll have the weekend to kick back and relax. 🙂

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Here is my twin sister and her supportive hubby, after knocking out infusion #4 of TDM1 at Mayo Clinic in Rochester!

Diagnosed with “Microcystic edema” (what is that??) and PSA: DON’T USE OPTI FREE REPLENISH AS YOUR CONTACT SOLUTION!!!

Remember when I got a weird rash that I thought might be melanoma that ended up being pigmented purpura one month into my surgical recovery? Well, my twin sister has now been diagnosed with “microcystic edema,” which is kind of worse than that. A couple of weeks ago, she realized she was having trouble seeing street signs and made an eye doctor appointment right away. At her exam, she found out she has developed small cysts on BOTH of her corneas that are causing blurred vision.

Her first thought was that these cysts must have been caused by her chemotherapy regimen or Tamoxifen, but her eye doctor said those treatments tend to affect the retinas rather than the corneas where these cysts are. And the doctor told my sister her retinas looked “excellent.” So, instead of it being a side effect of her chemotherapy regimen, her eye doctor said it’s very likely that the cysts she’s developed on her corneas were caused by frequent use of contacts and/or her use of Opti Free Replenish contact solution.

Say what?

Apparently, sometimes, contact lens users come down with a condition like this, and my twin sister is one of the “lucky ones” who came down with it. Also, less than 10% of patients who use Opti Free Replenish as a contact solution are susceptible to this problem. So, it’s probably best if you use this solution, that you stop now! 

“How is that possible that the product is still on the market?!” my sister asked in disbelief.

“Well, it’s less than 10% of patients who it happens to, so they figure they’ll keep selling it,” her eye doctor said.

My twin sister, being the lawyer that she is, said: “I guess there haven’t been enough lawsuits yet!” Ha, ha.

Apparently, patients can use the contact solution for years with no problem then all of a sudden it causes an issue. The eye doctor recommended Acuvue contact solution instead. So my sister is going to buy some of that.

We are grateful it was nothing more serious than some cysts on her corneas, but it’s still cysts on her corneas.

“Poor Steph!” one of my friends texted to me. “It’s just one thing after another!” Yep, it sure is. Which makes her all that much more of a champion. She is one of the strongest women I know!!!!!

According to the eye doctor, the cysts should go away within two weeks if she stops wearing contacts and wears only glasses, which she has been doing. (Thanks Warby Parker! :))

We are praying for miraculous healing! Cysts be gone!!!

We are grateful it’s not worse than it is. The eye doctor said some patients present with white blood cells attacking the corneas, and bad cysts and scarring. He said my twin sister’s cysts aren’t nearly that bad and aren’t going to leave any scars!

Hallelujah!!

And so we press on, one more day at a time. If things don’t improve or if she needs a second opinion, she’ll get one at Mayo Clinic in Rochester based on a referral from her oncologist. God is still good!!!

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Thanks to stylish and functional Warby Parker glasses, hopefully my twin sister’s corneal cysts will be all gone in two weeks’ time! Prayers up!!

Next steps

My twin sister has her follow-up eye doctor appointment on Tuesday, August 4th, and we are praying for the cysts to be completely gone at that point!! If they’re not, she’ll schedule a second opinion appointment at Mayo Clinic in Rochester. Her fifth infusion of T-DM1 takes place in three weeks, on Friday, August 14th; her sixth infusion takes place on Friday, September 4th; and her seventh infusion (HALFWAY THERE!!!) takes place on Friday, September 25th.

Thank you all for your continued prayers for 1) No reactions to her new chemo drugs 2) Her complete healing and 100% effectiveness of the treatment so her cancer never ever comes back!! 3) Side effects to be minimal / nonexistent!! And for these silly cysts on her eyes to go away!!

Our verse for these next few weeks is Hebrews 10:23: “Let us hold unswervingly to the hope we profess, for he who promised is faithful.”

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From YouVersion 🙂

This blog post is the 26th 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. To order a tshirt raising awareness for breast cancer, fill out this form by Friday, July 24th–shirts are $20 and $8 goes directly to support Mayo Clinic’s Breast Clinic in Rochester, Minnesota!

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