The first set back

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Since the last update, I have had 2 infusions bringing me to a grand total of 22 so far. Unlike early-stage breast cancer I don’t count down until I am done with treatment, I count up — the higher the number the longer I have been on the treatment line, which means it’s all working!

On Sunday I had my scans. The scanxiety kicked in on Saturday and stuck around until I got the results today.

Let’s get down to business: the cancer is still very small and stable. YAY! That’s always good and welcome news! Seriously, as soon as I hear “your scans look good” I am at ease. But as the title of this post says, I have received news of my first set back. I didn’t get my 23rd infusion today. I am still processing it all.

At my last set of scans, we saw some inflammation in my right lung. This inflammation is called pneumonitis, or in radiology speak it is called ground-glass opacity. The hope was that with time the pneumonitis would shrink or at the very least not grow in size. The scan results I had today showed growth. What does that mean for treatment? For today it means no infusion. I am on two drugs that are shown to have a lung inflammation as a potential risk. We don’t know which one is causing the inflammation, so Dr. Tolaney wants to stop the most likely culprit (pembro) for a period of time. The pneumonitis can be fast-acting and fatal if not addressed appropriately. In fact, one person in my clinical trial has died from pneumonitis recently. My small trial. Yikes! Dr. Tolaney is acting cautiously by suggesting I take a break from the pembro. I trust her judgment. She works with both of my trial drugs regularly and generally has a good intuition about these types of things.

In the meantime, I will still be on abemaciclib twice daily, and I am still in the trial. And in nine weeks we will rescan and see how that ground-glass opacity looks in the images. If there is a reduction of the pneumonitis, then I can resume pembro, maybe. You see, both drugs can cause inflammation on their own, but together they are causing more frequent rates of inflammation over time. So there is a possibility that the two are just not compatible for the long term. This is what clinical trials are for; so that we can learn about these types of interactions.

As of right now, I am asymptomatic, sort of. This just means I am breathing fine! In fact, I went cross-country skiing two weeks ago and felt great! I have a lingering cough from a cold virus I had at the start of the year. The cough could still be a result of the cold, or it could be a side effect of the inflammation. In the next nine weeks, if the cough doesn’t extinguish itself, it’s likely from the inflammation. If the cough persists or gets worse, or if I find myself in a situation where I am having trouble breathing, I will get scanned before the nine-week mark and we will proceed based on what those images show.

I always leave my oncology office with hope and a plan. Even today I left Dana Farber reminding myself that this isn’t terrible because this isn’t a progression of cancer. All in all, I am doing pretty good. Hopeful that we caught the inflammation early enough that I won’t see any more growth and hopeful that I will remain asymptomatic. But as things go, I am reflecting back to my appointment and I can’t help feel the good with the bad. Although my oncologist doesn’t seem alarmed or even worried because we are moving forward with caution, I still feel a bit defeated.

I am so happy that this set back isn’t cancer growing. But I have high hopes for immunotherapy, which is why I want to be on the drug so badly. I think the abemaciclib is likely the drug that is shrinking my tumor sites so much, but I think that if I have a fighting chance of many years without active cancer ahead of me, it will be because of immunotherapy. There is something just magical about the idea that one’s own body could be jump-started to heal itself.

Tonight I am going to give myself permission to be disappointed. And tomorrow I am going to will myself back into a place of hope and healing.

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From infusion #22, three weeks ago
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Published by Hannah

This whole blog is about me....just read it.

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17 thoughts on “The first set back”

    1. I will pray even more for you and the doctors. My love for you is just growing since you are my hero. I just wish I could do more. If it was spring I would jump into the Toy just to hold you and hug you.

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  2. Thanks for sharing you update,,,,sending positive vibes that you continue making progress. Sounds like you have a great team working with you. Lots of hugs. XOXOXO

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  6. Hannah, your will and determination is boundless, but I’m also glad you gave yourself permission to be human for a night. 😉 Can I thank you for your bravery in participating in this trial, for helping forge a path of hope and healing for so many other women? I’m so grateful for you and your courage in this fight and for this battle you’re winning every day. ❤️ Reflect this evening and tomorrow the sun will rise on another beautiful day!

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  7. Oh my sweet friend. Thank you for sharing all this.
    You’re so brave and incredibly strong. I’m glad you’re so wise and are able to give yourself permission to feel all the feels.
    We are always praying for you and cheering you on.

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  8. Living with the roller coaster of emotions that accompany scans and sat backs and more scans and repeat is for more challenging than I ever thought it would be and everyone deals with it in their own way. Don’t be afraid to ask for help, for support, Im person or virtual. Carrying this much is not a one person endeavor. ❤️❤️

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  12. Hannah, I applaud your courage and perspective! You absolutely deserve to feel disappointment. And hope. And everything in between. I hope this set back turns out to be just a blip in an otherwise long story.

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  13. Sweet daughter, I am ever amazed by your strength and fortitude! You take my breath away with you innate ability to be logical and real in such an uncontrollable situation. We are so grateful God has placed you so close to the best medical and cancer researchers in the world. You are pioneering a way for others and for this alone you should be proud and feel strengthened. We are all disappointed by the news but encouraged by your hope. Love you – Mama Bear

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  14. Sending you warm hugs and wishing we could chat over a cup of tea! Thank you for sharing your updates and helping me learn about immunotherapy. I’m hopeful your cough will resolve. Xoxo

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  15. Hannah, I’m sorry for the lung complication…you don’t deserve it, nor any of this. I’m an identical twin, and I’ve always wondered why God saw fit to hand me whole bunch of “challenges” that He/She didn’t hand my twin. It never seemed “fair”….And more importantly, why God handed you this Giant Challenge, which seems Wholey UNFAIR. I don’t understand how these things work…but I do know that in return for your too heavy burden, you have given the rest of us such blessings in your courage, sweet character, smile, and joie de vivre….You will prevail over this “bump in the road”, and it must be a bit nice not to feel as yucky from the pembro….I can’t imagine how hard it would be to feel yucky every day. Again, you are amazing. Sending love to you and your family….and as always, I stand at the ready to be your HOUSE ELF!! With luv and hugs from across the street, Ruth et al

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