Metabolic activity

General, Medical Updates 3 Minutes

As far as I understand it, increased metabolic activity creates higher SUV value on a PET scan. In more understandable terms, the places where there is more activity shows up brighter on the PET scan. Brighter images on the PET scan means the cancer has “woken up” or is starting to wake up; that the cancer is no longer held in check by current medication regimens.

That’s what showed up on my PET scan on Monday.

The new lesions from August, 2019 when the cancer outsmarted Ibrance are active again, along with older lesions that had previously calmed down or, as we hoped, had died completely. That hope was dashed this week. As much as we think we’ve outsmarted the crazy resilient cancer cells, they prove us wrong at times.

Being wrong is a horrible feeling and even more so in this context. It’s literally life and death. My life and my death. The weight of that, to be making decisions that will literally affect the length and the quality of my life, cannot be adequately described. It’s stressful and the pressure is beyond explanation.

While the cancer cells are getting themselves active again, the good thing is that there are no new lesions. There is nothing new in my bones and the cancer has stayed inside my bones. For a variety of reasons, this arrangement is what we need to keep in place as long as possible. Basically, as I understand it, we caught the impending progression early enough that we may have some hope of reining it in.

In light of the fact that Piqray is so new, the information/protocols describing what to do in this situation are limited. As my medical oncologist said, we’re in a gray area without much of a compass at this point. So, today, in our appointment, we went back to the basic science. After reviewing my research and hers, we got a science researcher on the phone; a science researcher who is working on a drug to improve the efficacy of Piqray. He’s in a unique position to be able to provide information to inform our discussions.

And so we came up with a plan for the short term. As I’ve often said, we terminal cancer patients literally live scan to scan, unable to make plans until we see the results of the next scan. These next three months are going to be quite interesting in many ways and not just in my household.

The current plan:

  1. I’ll stay on Piqray, Faslodex, Jardiance, Zometa and my regular list of supplements and vitamins.
  2. Tomorrow, I’m adding Metformin CR back to my regimen. I’d been on Metformin when I first started Piqray and then I switched over to Jardiance for a variety of reasons that are no longer relevant. The two drugs (Metformin and Jardiance) work very differently on the insulin and glucose in my body, and the hope is that they will work in a complimentary way. It is the insulin, after all, that fuels the cancer via insulin receptors. My insulin, while under control, is higher that we’d like it to be.
  3. After chemo education next week, I will also add Kisquali. Kisquali is another CDK4/6 inhibitor. I was previously on Ibrance and because I received 24 months of stability while taking Ibrance, we are going to see if adding Kisquali will help. We’re not willing to let go of Piqray yet and it’s not able to keep the cancer controlled on its own. So, we’re going to help it out a bit and see if that works before switching up treatments again.
  4. Since Kisquali can cause some heart issues, I’ll be getting regular EKGs to ensure that my heart is doing what it’s supposed to. Also, I’ll be getting more regular blood tests to monitor my liver function and magnesium levels. I’m sure I will get a really detailed education on this drug just as I have with all of the medication I’ve taken.

There are no contraindications with taking all of this medication together; at the same time, it’s not something that happens often. I told my doctor that if she wants to write a paper about our experiment, I want to be a co-author. The experiment has a short shelf life and we may have to make adjustments well before the regularly scheduled three (3) month scans.

Here we go …

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

42 thoughts on “Metabolic activity”

      1. Abigail-I am sorry to hear this-sounds like you have a great team working on the best approach. I am also a BC survivor -4 years out. Interested-where are you getting care from? Have you been on metformin since diagnosis? Insulin resistant-I knew there were some studies going on with metformin and cancer? What other supplements are you taking?

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      2. I’m not a breast cancer survivor, I’m terminal and will always be in treatment. I’m treated at the Miami Cancer institute in Miami, Florida. The only reason I was taking Metformin was because of Piqray. I take a variety of other supplements that have been vetted by my doctors. Are you still on Tamoxifen?

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  2. Oh my goodness, Abigail. So much to take in. Praying your body responds well to this new regimen, wisdom for you and the doctor for any adjustments that need to be made, and always, God’s presence known in your heart, mind and soul as He walks this road with you and your loved ones. 🙏🙏🙏💕

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    2. Abigail, my dear virtual friend—
      This is most emphatically not what you and we, your cheering squad, want to hear. And still, you are able to explain it all to us in such clear and measured words and tones. You may have been trained in law, and I assume were very good at it, but you are an educator extraordinaire.
      I choose to focus on the better news morsels: that the cancer is still within your bones; that it appears its new activity has been caught early; that there are no contraindications within the complex cocktail; and that you seem to be getting excellent and creative care. Reaching out to that researcher seems so very right, and yet I wonder how many patients have such opportunities. I’m grateful that you do.
      I trust you’ll take the time you need to process this new information in whatever way you need to—and then you’ll square your shoulders and move on. I am sending you my most positive healing thoughts.
      On a practical note: you mentioned socks. Would warm alpaca socks be too much in Orlando? I wear ones that I get from an alpaca farm in Martha’s Vineyard; they are soft and very comfy. If you think you’d like a pair or two, please send your address to me at annie@annieasksyou.com.
      💕

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  3. Oh Abigail – you are certainly being challenged! I hate reading about progression in other lifer sisters. I am on Kisqali and have been stable for 16 months. It is very similar to Ibrance with similar side effects: fatigue, possible mouth sores (swear by L-Glutamine to avoid these) and the usual lack of appetite, change in bowels, low blood count etc. I hope it brings you the support you need and stops the cancer in its tracks. Hoping and praying you’ll get a needed reprieve.

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    1. Piqray is very new. It was approved by the fda utilizing their fast tracking program in May of 2019. I’m grateful that I have access to it but I’m also stymied at times at the lack of good info. Thank you for reading and commenting!!

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  6. Wow! There’s so much to think about when taking medications for something as complex as this. I am in awe of your strength and resilience! ❤️

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  8. Thank you for sharing so informatively! May I ask what supplements or holistic things you take? I’m MBC also. In first line of treatment for a year now, Ibrance and anastrazol

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    1. I take a variety of supplements tailored specifically to my body and my needs! My Chinese doctor helps me with herbs and my naturopath makes tinctures for me. Sorry I can’t be more helpful!!

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  11. On the same coaster…Ibrance, zometa and fluvestrant…my 3 yr run is up with ibrance and fluvestrant. Now moving to oral chemo. Let the ride begin. Sending you prayers and love. ♥️

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  12. I am so sorry that the PET scan showed increased metabolic activity. Grateful that it has remained only in your bones with no apparent spread. I cannot imagine what you are going through and words are totally inadequate to express what is on my heart but please know that I am thinking of you and praying for you and your family daily!! My friend Karen was hospitalized for over 2 weeks, with lymphatic and brain mets and they are also utilizing cutting edge treatments that have not been available to date. Her oncologist is conferring with a team in N. Carolina. If she can be of any assistance to you, I’m sure Karen would be glad to share her treatment protocol, if it could possibly be helpful. Sending love and prayers!

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  14. Hi Abigail,

    I’m sorry to hear about that increased metabolic activity. It sounds like you have a wonderful team, and I’m glad that together you’ve come up with a plan. Hoping all goes well. In your corner. Always. x

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