As most of you know, I get a quarterly PET/CT imaging test to determine if the cancer cells are behaving themselves. October 11, 2021 was my most recent PET/CT and it wasn’t what we’d hoped for and, frankly, only happened in October because I’d advocated for it since I qualified for testing every six (6) months in light of my stability. But, I told my doctor that I couldn’t deal with that long between scans from a mental health perspective and I appreciate the fact that she listened to me and sent in the referral.
A few hours after the actual scan, which was at 8:30 a.m., we found out that the results weren’t the best. Here’s a picture of the pertinent (original) findings …
My medical oncologist called me a few hours after I saw the results and I already had an appointment scheduled with her for the next day, so I was able to get input quickly. By Friday after the Monday PET/CT, we were in Jacksonville at the Mayo Clinic getting a second opinion and exploring trial options and I’d checked in with numerous friends and researchers for some thoughts.
As I understand it, there are a few areas of concern.
First, are the two new lesions in my bones, one at C3 and one in the right 8th rib. Both of these correlate to some new aches that I’ve been dealing with, so there’s that. Thankful the new spots are small and still contained within the bones.
Second, there are multiple bones mets that are increasingly active. This means that the metabolic activity is higher, showing that there are more areas where new mets are likely to form. Again, thankful that this activity is still in the bones and there aren’t multiple new lesions to deal with.
The conclusion from these two areas/issues of concern is that the medication regimen I’ve been on isn’t working. Since this is the second time that Piqray has failed me (the first was in March of 2020 when we added Kisqali), we are definitely going to drop Piqray. Initially, I’d mused that perhaps we just drop Piqray and keep Kisqali, but both medical oncologists I met with (my primary doc and the second opinion at Mayo) were not supportive of that idea. And this is a good confirmation that it is good to listen to the people who went to medical school even though I’ve many ideas of my own.
The conclusion was to move to Verzenio, which will be my 3rd line of treatment since my diagnosis of MBC in 2017. Verzenio is in the same class of medication as Ibrance (first line of treatment) and Kisqali (part of my second line), known as the CDK4/6 inhibitors. This class of medication is targeted therapy in that it targets a specific pathway in the cells to inhibit or block a way that cancer cells like to use. We also did a TON of bloodwork to look at a variety of things, including getting a liquid biopsy called Guardant360, which I’ve gotten twice before with no helpful results. This is a downside of bone only mets, it’s so hard to get good information about the mutations occurring within the cancer cells as we only have my original breast tissue removed in 2017 to test.
The third area of concern is the pesky thing in my right lung. I’d previously met with a pulmonologist to explore what to do about it since the first time it showed up was after I’d gotten the first two injections of the Pfizer Covid vaccine. The thought that it was from the vaccine and/or pneumonitis was ruled out and we’d decided at that point to just keep watching it. I also got a CT of that area a few months ago and again the conclusion was to watch it. This time, though, that SUV value, which indicates activity raised some red flags with the radiologist and the medical oncologists. I did consult with a pulmonologist who opined that it could be that the alveoli may have gotten tethered to the pleura, but that with my history it was more concerning and we should probably consider getting it out, plus the size (more than .8, puts it into the category of actionable).
So, off I went to a cardiothoracic surgeon (just another specialist to add to the list!) to see if excision (getting it out) of the lesion in my lung makes sense and, if so, when.
And we discovered that that increased activity based on the SUV value was a typo.
Yes, you read that correctly. Between the radiologist, whoever was taking his dictation and me getting the scan results, the actual SUV value of 0.83 (a decrease) became 4.83 (a substantial increase). We spent about a week pretty freaked out that I had my first soft tissue met and that meeting with the surgeon to discuss surgical options.
Once we found out that I didn’t need surgery on my lung and the mets are still in my bones, we exhaled a little and shifted to focus on detoxing from my second line of treatment and adjusting to the side effects of my third line. I spent about a week in bed with serial headaches, major body aches, and general misery from Piqray — definitely working on following up with Novartis and filing a report with the FDA. At the end of that transition, I ended up in the emergency room with bladder inflammation, which has now been an ongoing issue to address.
As many people have said, this #MBC experience is always providing new issues/experiences. Dealing with the healthcare system as a terminal/forever patient presents its own challenges and difficulties that frankly flatten me regularly. I’ll update more when I know more!
No Half Measures 
Oh Abigail. You are in my prayers.
Lorraine
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Thank you! It’s been a lot.
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I know. It sounds awful. I don’t know how much prayers work but at least you know I am thinking of you.
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Oh, Abigail, what a crap time you’ve been having and through it all you kept on with the daily awareness posts all month. Huge respect.
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My heart is with you❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
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So sorry to hear about your scan results, typos (UNBELIEVABLE) and side effects. I hope you recover quickly from the bladder issues and that your new protocol works!!
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Thank you so much!! It IS unbelievable that such an important typo can occur.
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I don’t comment much, as we don’t know each other. I thank you for your frankness in sharing your life with us. You provide great insight into all the MBC mess. Please know that you (and your blog) make a difference. 💕 Hoping your 3rd line is the one that offers you many, many more years.
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Thank you!! Much appreciated.
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I’m so sorry Abigail …
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Thank you.
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I cannot even imagine trudging through all the results, treatments, side effects, anxiety, AND now typos! Prayers continue for strength, discernment, pain relief, and God’s abundant peace in this continual storm. 🙏❤️🙏
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Thank you, my friend. I’ve asked for a formal review of all the checks and balances in the radiology department to understand how it happened and to hopefully find a way to avoid it in the future.
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That’s awful that you had to deal with the mix-up with the lung met, but I’m glad in the end it’s less active.
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We are very glad that the lung thing isn’t so active also. ❤️
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Prayers coming your way for strength, continued courage, and peace. I know about all this too well. Thank you again for sharing your strength with us. ❤️🙏🏻
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Thank you, much appreciated.
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Praying that new protocol is beneficial. Praying or no you always. You are beyond amazing in just a zillion different ways. Much love, Dori
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Thank you so much!! ❤️😘
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Oh, my, Abigail! This is why we all love you and admire you so much.
I’d been thinking that you were due for imaging and obviously hoping for more encouraging news. To know now that you were confronting these new developments—ranging from the very troubling to the downright scary—while continuing your daily informative posts (and who knows what else?) is kinda mind-blowing. Good grief—a typo! How chilling to know the enormity of such an error.
I send my continuing love and support as you confront obstacles and selflessly use them as teaching moments.
May treatment three be the charm that gives you years of less eventful reports.
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Thank you so much!! Yes, October was quite the month and I lost so much productivity time but my body has needed the down time to adjust. And yes, medical errors/typos, etc., are just chilling. I’ve filed a formal complaint and request for the checks and balances in the radiology department be reviewed. And you can bet that I’ll be scrutinizing the next reports very carefully. It’s always something with MBC!
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I am so sorry to hear of your progression (although I knew something was up by the bread crumbs left on IG and Twitter), As for the typo….GRRRRR. Someone needs to check those all important reports. Thank God that it was in your favor! I am a bone mets only person, also had a scare this month (adding to the agitation of BCAM), but the scans said things were the same as in July. But the tumor marker blood test numbers are up! Now we wait and see if it is something micorbiotic and it’s teasing us, or what. I have been on Verzenio for three years with good results and have just had to dosage lowered (right before blood tests). Verzenio makes you tired, and the toilet is your new friend (keeping it real), and in my case it ultimately tanked by WBCs which is why she lowered the dose, after a pill holiday. But it is working for me and I hope that it does for you to. Can I ask if that bone radiation you had months back was effective?
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I’ve certainly made friends with the toilet! Lomotil is helping but the GI side effucks are new. I’m happy not to be so nauseous all the time, though, so that’s a silver lining. Also, my wbc are much better on verzenio than on my previous regimen, so that makes me much more comfortable to be out and about again.
The bone met in my pelvis where I did SBRT radiation in February is GONE!! No sign of any metabolic activity there.
It’s always something new and different with mbc!
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So sorry detoxing from Piqray has been so tough. What is supposed to help should not hurt you in this way. Plus you have new meds to acclimate to that bring their own set of issues. Praying most of the worst is over and you acclimate well to Verzenio and I’m assuming stay on Faslodex. My Dr. had mentioned moving to this treatment plan before we found the trial which I was on way too briefly. Hugs and love ❤
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Thank you, my friend! Yes, I’m staying on Faslodex for now. No new mutations showed up on my Guardant360 report so still on the same treatment and hoping for good results on the next pet!
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Praying for you
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Continuing to pray for you, and that God will give the doctors continued insight and wisdom for your treatments. And also praying for continued strength, encouragement and peace.
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I just read the last post and it basically said everything that was on my heart. I have to mention though that the typo was beyond unacceptable and I’m so sorry that it added to a very stressful month for you. Hoping and praying this month will be less doctor visits and more rest for your body.
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Oh Abigail – that is SO MUCH to take in… I am utterly gobsmacked and furious about that typo issue – a frightening result that you did not need. And so preventable and unprofessional. I’m glad you filed an official report with radiology, and that policies will be immediately implemented among staff there to help prevent even one more cancer patient from suffering such a careless and terrifying dictation mistake.
Take care – hang in there… ♥
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Very scary typo. My goodness.
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It feels like we always have to direct our care and not only advocate for MBC awareness but ourselves too often dealing with the emotional ups and downs of errors and typos and other issues that happen way too frequently that shouldn’t happen. Our emotions are on edge as it is. So sorry you were put through that, infuriating.
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You are so right, it’s so complicated to live this experience. Thank you.
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Praying for your wellness friend. 💙
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Thank you!!
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