Quick Medical Update

Medical Updates 3 Minutes

When we discovered that the cancer in my body had spread to my liver back in January of this year, we had to make a lot of decisions rather quickly, which always seems to be the case in this experience with Stage IV Metastatic Breast Cancer (MBC). No matter how much we prepare or research or discuss, we’re almost always in a situation where decisions have to be made quickly and there is a crisis of some kind. In this situation, the crisis was the discovery that the cancer had outwitted the last two treatments I’d had and was rapidly getting out of control (or at least this is how I interpret the spread to an organ for the first time in 5 years).

And so we decided to go with a combination of Taxotere (IV chemotherapy) and Xeloda (oral chemotherapy). I signed a consent to do six (6) infusions of Taxotere every three weeks with the option to add a few more, if necessary, in February. This combination allows my medical team to add or subtract Taxotere while I continue to take Xeloda, for as long as it works. Additionally, the combination of these medications intensify the affect of each (also intensifies all of the side effects of each).

Let me just say that I know that IV chemotherapy is often something that is daunting to many. For those of us who are hormone positive and can often stay on oral therapy for years and years, chemotherapy can feel like failure and like the beginning of the end. While intellectually I knew and know that including IV chemo isn’t a failure or the beginning of the end, it certainly has marked a period of experiencing MBC differently.

I’ve had years of stability, of nearly feeling “normal,” of having energy, and definitely not looking sick. Sometimes these years of not feeling so much like a cancer patient can lull us/me into a false sense of what MBC is like. While I always knew the other shoe would drop at some point, that I would be on IV chemo again at some point, the experience of it has been very different from the initial IV chemo experience. When we found out that the cancer had invaded an organ, I knew in those same bones that are still cancery, that we needed to bring out the “big guns,” meaning more than just targeted therapy, to get the cancer back under control and it felt like we didn’t have any time to waste.

So, I started the IV and oral regimen in February, which are administered in three week cycles with the IV chemo at the end of an off week from the oral meds. After the first three cycles, we did a PET/CT in April, which demonstrated that the regimen was working as it should, that the liver lesions were/are all dead, and the bone lesions following. My tumor markers, which have been a good leading indicator for good and ill, have pretty much followed a good downward trajectory after increasing to the highest they’ve ever been since diagnosis in 2017. All good signs.

The only fly in the ointment, outside of pesky side effucks that have been a lot to manage, is the ongoing tachycardia. My heart rate has been consistently in the 130s and a visit to a cardiologist with the all the tests hasn’t revealed a specific cause. Well, we suspect the cause is the strain on my body from chemo, the ongoing edema and enforced lack of activity because of extreme fatigue. Hoping to see that heart rate go back to my normal in the weeks and months ahead and definitely watching out for the rare cardiac side effect of Xeloda.

In light of our move from Miami to Orlando coming up next weekend and the adjustments to the new medical team, both local in Orlando and at Mayo, my next PET/CT won’t be until mid-July. I’m hopeful that the side effects of Xeloda will calm down a little now that Taxotere isn’t intensifying the affects of the medication and that the PET will show that the oral meds are doing their job for now. I’ve a second opinion at Memorial Sloan Kettering planned for the summer to review all of the new options available to me now that the cancer had mutated substantially.

And so we return to taking things one day, one minute, one second, at a time and hoping like hell that the medication is doing its job. I’ve a little bit of hair growth coming back on my head, which my boys think is hilarious and we had a lot of fun with the henna crown and our photo shoot for Mother’s Day. The boys are getting older and asking more questions and having more opinions; at the same time, I’m thankful that they roll with all of the changes probably better than Elliot and I do. The last five (5) years has been an education for us all and I suspect they will never remember me before MBC.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

36 thoughts on “Quick Medical Update”

  2. I’m so happy to know things seem headed in the right direction, and as always, praying they continue to.

    Will also be praying for all of you during your move; especially you and E, as it must be so incredible to process in so many confusing ways. 🙏🏽❤️🙏🏽

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  3. Thanks for the update. All so tough but let’s hope the treatments are going to give you a lot more time with your beautiful boys. May God bless you and keep you xxx

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  5. What a gorgeous photo with your boys & I love the henna decoration. So good to hear that the treatment is doing what it needs to do as that’s a tough regime, and I hope that the cardiac issues settle down soon. Good luck with your upcoming move.

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  6. I hope and pray that this regimen keeps you stable for a really long time. This world needs your awesomeness ❤️. Love you dearly my friend.

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  8. So grateful for the positive news! I’m praying for all of you in this time of huge transition.
    Your last sentence really struck me. Even though you grieve the mothering experience you had before MBC, your boys will always remember you as the best MOM ever! And as they get older they will begin to understand the exceptional effort and strength it has taken to create special moments and memories with you. And they will love your even more for it.
    So looking forward to seeing you Sunday! And Monday❤️🙏❤️🙏

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  9. Thank you for this update. I’ve been wondering about you, your family, your journey.. My cancer progressed this January to my liver. Otherwise it was in my bones only and controlled by Verzenio. It seemed like forever until I went on Xeeloda – tests, biopsies, scans. Meanwhile the tumor markers are out of this world and damn scary, Finally I was give Xeloda and it failed. NOthing. But it left my chin and lip numb, and my eyes seem to be getting bad. I’m angry. I read all the side effects on the Xeloda website but nothing about eyes or face pproblems. The onc says it might go away now that I am off Xeloda, but it may not. Now I’m doing IV Taxol. I get a new port this morning. If Taxol gives me more time, I’m all for it.

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  10. Hi Abigail,

    Appreciate the updates. Wishing you all the best as you switch care teams and with the move, of course. You’ve a lot on your plate, that’s for sure. Here’s hoping the side effects do calm down, your heart rate slows a bit, and treatments keep doing their thing.

    And gosh, what a darling photo!

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  11. Love the pic of you & your boys❤️❤️I pray your move will go smoothly & you will have some help unpacking all those boxes. I also hope you have found a new oncologist & medical team who will give you the support that you need. I have an upcoming appt with mine in Winter Park this month.

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  15. May the Lord give you strength and may this new treatment continue to work for you. Pray that your tachycardia comes under control and that the move goes well.
    Lovely photo.

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