So long Ibrance, two years was a good run

General, Medical Updates 3 Minutes

Progression was not the news we were hoping for this week, but then the unexpected paths that life has brought us has been par for the course over the last few years. Expecting the unexpected is a difficult adjustment to make and clearly I’m not quite there yet. Two (2) years of stability after the initial shock of the diagnosis had, in many ways, lulled me into expecting that status quo to last.

Last Friday was my sixth PET scan.

We heard nothing over the weekend, which was not a good sign since my medical oncologist has been extremely consistent about calling me over the weekend after a scan to give me the results.

Monday afternoon, I met with my medical oncologist, Dr. Grace Wang, at the Miami Cancer Institute. She delivered the news with a matter of fact compassion that we’ve grown to expect from her. Not only did we discuss the “mild progression” that the PET scan showed, but also her plan. She’d been busy, consulting with other doctors and reviewing the details of my genomic and genetic markers and mutations, yet she started the conversation by asking what I wanted to do, if there was a trial I wanted to pursue. She’d also presented my case to a molecular tumor board, gleaning more perspectives.

Bottom line, I have two new lesions, one in my spine and one in my pelvis. The rest of my bone mets are still inactive and dead or still dying. It is definitely a noted silver lining that instead of dealing with hundreds and hundreds of mets all throughout my skeleton, we are only dealing with two (2).

Yet, those two are two too many.

I’ve learned well over the last two years that medical oncology is both science and art. Yes, the medication is based on science and research. Understanding the body, its processes and the cells, the cancer cells and otherwise, is important. However, there is still so much that we don’t yet know. So, when the cancer figures out how to get around medication that was designed to keep it in check, then the scientist must also embrace the art of anticipating the next move the cancer cells might take.

My medical oncologist is both scientist and artist.

I’m so thankful for that. Truly.

Even though the progression is mild, the fact that my tumor markers have been rising over the last few months, communicates that the mild progression we are seeing right now is likely the harbinger of a major progression. In light of this development, we are in the process of changing my medication from Ibrance and Letrozole to Piqray and Faslodex. We’d already completed the testing and paperwork necessary to confirm that I have the mutation (Pik3ca) that Piqray targets.

I am thankful for the research that makes the medication I will be taking possible. I am thankful for a medical oncologist who cares. I am grateful for the support I’ve been offered over the last few days.

I’m also really fucking angry.

I’ve been living with this disease for 2 years and while it hasn’t been easy, we’d hit a plateau where I finally felt as though we’d adjusted, we’d relaxed. Probably too much. The reminder of the fact that cancer will take my life, that this disease is definitely not chronic, that there is no cure, that the best medication science can offer right now will only work for a glimpse of time, sucks big time.

I’m thankful for the time with my family that the current medication gives me. At the same time, I’m so angry that I’ll miss out on so much. I’m so angry that the cancer is able to get around the best we have, that allowing the doctors to inject me with poison for more than two years, resulting in hospitalizations and blood transfusions and many many sleepless nights, hasn’t been enough. All of the alternative therapies and everything I’ve done to literally turn my life upside down, hasn’t been enough.

I’ll get back to a semblance of equilibrium, I’m sure. For now, everything is upside down again.

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 “So long Ibrance, two years was a good run”

  1. I just hate that you have to go through any of this. The fear of the unkown takes on a whole new meaning once there is a cancer diagnosis, especially metastatic cancer. I’m following you closely. I’m soaking up all the information and experiences you share. You’re such a beautiful, intelligent, compassionate and genuine woman. Honored to know you. Love and light, hun.

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    1. Thank You, Meg. Yes, the fear of the unknown combined with the fear of what has already happened, that’s the worst. I’m honored to know YOU! Love and light to you today and always. 😘❤️

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  2. Pushing the like star on this post has me conflicted. Wishing there was a dislike, angry star. This was not the news I was praying for, for you. I can tell you the faslodex has one major side effect…pain for about a week after. I soak in cbd salts after and it seems to mitigate much of the swelling and pain. Also higher up on the derrière helps. I know this isn’t the news you had hoped for and you have every reason in the universe to be angry. Just hold in your warrior heart the support from not a few but a multitude of Mets and cancer warriors. You inspire us. You inspire me❤️

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      1. My tip with faslodex is to put no weight on the leg on the side receiving the injection. Then switch and put no weight on the other side. It helps lessen the muscle soreness side effect. Sending you lots of hope this drug treats you well.

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      4. Beware of the weird side effects…weight gain, welts or blisters on your legs much like mosquito bites, dizziness and a very strange creepy crawly feeling in your skin. I thought I was crazy but I guess those are all normal.

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  3. That news stinks. I’m two hours away from learning what my latest scan will reveal. It hasn’t been great the last few times, so I completely understand your anger and what a gut punch progression is. Prayers that the new meds cocktail gives you another span of years at stable before the cancer beast gets creative again.

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    1. Thank you for reading and commenting! The experience of living with cancer has been far more difficult than I’d realized beforehand. Constant changes, constant upheaval. It’s quite an experience. Love and light to you. 😘❤️

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  4. I am quite sorry to read of these latest results. I wish I had better words to express my empathy for all that you are experiencing. But if I can lend help in any way whatsoever, don’t hesitate.

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    1. Thank you, much appreciated. I’ve seen so many lovely people I care about dealing with diagnoses, reoccurrences, progression, hospitalizations … cancer is an insidious disease. Love and light to you. 😘❤️

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  5. Abigail,

    I’m so sorry to read about this. My father was diagnosed with stage four, very aggressive, glioblastoma brain cancer with six months left to live, if he was lucky, which he was, thankfully. All I can offer you is that I understand what your family is going through, and I may not understand the type of pain you are going through, but I feel terrible for you. Cancer is such a debilitating disease that just sucks the life and out of a person. I will pray each day for you to just keep having one more day with your babies and family, and I hope you will. I may not comment on your posts, but I do look forward to the email alerts of your posts, and I do read them. You are a fighter, and you just have to keep fighting❤️❤️❤️

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  7. Abigail,
    I am so gery sorry to read of your progression. Unfortunately, it is inevitable, just a matter of when. You mentioned you mught have gotten too comfortable…I never did. I am a periodontist and can understand all the doctor level literature out there… You have probably lived a happier more contented life in your two years on Ibrance than I did. Embrace that calm and goodness. The future cannot take away those good times and good memories.

    I lasted 18 mos on Ibrance/Faslodex with extensive bone mets to most. Then severe liver progression. 4cm large lesion grew to 9cm in 2 weeks of no treatment. Additional 10+ lesions appeared on MRI.

    I blew threw oral chemo Xeloda in 10 days and had a toxic reaction with liver damage.

    Now on IV Abraxane/Carboplatin with a brand new port for the past 2 weeks.

    Progression is a very scary time of transition. But as you remember from your original MBC diagnosis, once you have a plan in place and start working the plan, things can settle down a bit.

    I read your blog and appreciate your sharing your experience very much. I am writing daily blog-like posts on Facebook if your care to read those. They are public and on my Fbook page Valerie McDavid.

    I would like to start a blog but am intimidated by the learning curve in setting one up. Any advice???

    Bless you.

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    1. Thank you for letting me know about your experiences. I’ve learned so much more from other men and women living with this disease than many of the medical professionals. I do try not to bury my head in the sand and I am a realist, but I was definitely lucked into a false sense of security. I’ll check out your posts, but you shouldn’t feel intimidated to start a blog, it’s just a different platform to share your info. I like WordPress, but there are also other programs you can use. Love and light to You!❤️😘

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  8. I’m so sorry to hear this, Abigail. Whilst recurrences are kind of expected, they still bring with them that sharp intake of breath, and that feeling of “not again” (or something stronger). I wish you peace while you get back to a semblance of equilibrium. Much love ❤️

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  9. Keep fighting. My wife had an extremely aggressive cancer that took her away in a year and a half. Meanwhile, my friend’s dad was fighting against a brutal pancreatic cancer and was initially given 4 months to live. He went on for 12 years and died as an old man. Bad news is bad news – and I’m sorry to hear it – but you have a good shot at getting many more good years to come. Keep it up, Abigail! It’s a monster of an enemy, but that doesn’t mean it can’t be defeated, or at least defended against for a good long time. Go fearless. Fight. Never give up.

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  10. Abigail,

    I’m sorry about the progression, even though it’s “mild” it still sucks. Go ahead and be angry. Who in the world wouldn’t be? Sounds like you have a stellar oncologist. Love that she was formulating a plan even before you met the other day. Hoping the new treatment does its job for a long time and that the side effects aren’t too harsh. In your corner. Always. x

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  12. I only know you through FB and your blog but the news of your progression is terribly sad! I am sorry this is happening to you. You will achieve equilibrium again with another stable plateau. All we can do is delay MBC until a cure is found. Keep fighting, keep writing and hopefully within our lifetime a medical miracle will be found. Cheers & years! Deborah

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  14. I read your blog cancer is a shit storm we think we know how we will react to this but we don’t until it hits . Thank you so much for sharing you journey! It does not go void I so admire your strength.

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  15. Thank you so much for sharing your journey cancer is a shit storm … sometimes we think we know how we’re going to react but then we don’t until it happens .I so admire your strength your words will not go void with me.

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  17. 😦
    It so pains me to read this. It pained me the first time I read it and it pains me this time. I’m sorry that you have to go through more icky stuff just to have some semblance of a life.
    I get the relaxed feeling you had of being on the Ibrance/Letrozole combo, I am that way too. Heck, some days I can kid myself that I don’t really have MBC. Then reality sets in. I’ve been on the combo for 20 months, into my 21st and know the stats. I hope when it fails me that I handle it as gracefully as you appear to be.

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  18. Have you ever thought about publishing an ebook or guest authoring on other sites? I have a blog centered on the same information you discuss and would love to have you share some stories/information. I know my viewers would value your work. If you’re even remotely interested, feel free to send me an email.

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