Travel, treatment failure and trials... oh my
I have been meaning to write an update for quite a while… but I guess as things get harder to talk about, they also get harder to write about.
We had a fantastic trip to the UK last summer. It was everything I could have hoped for and more. Having never been overseas, the history that struck you at every turn was amazing. We had a wonderful time with great friends and made fabulous memories.
As suspected, when I returned, it was established that my treatment had failed and I was time to change course to a non-chemo treatment called Panatumumab (try saying that 10 times fast). I had been on this in 2018 and it brought about horrible skin side effects. I had been told that they had better premeds now and that they should be able to control it better. Unfortunately that didn’t pan out.
Within a week of my first infusion the skin on my face felt like it was on fire and I broke out in pustules. Shortly thereafter I felt flulike symptoms and had constant skin pain over large parts of my body. My medical team (including my favourite pharmacist) worked tirelessly to find creams and solutions; all the while assuring me that severe rash tends to be indicative of greater efficacy of treatment.
That first month was really hard. I hadn’t ever felt a sense of hopelessness like that before. I found myself feeling sick and in pain, with no relief and realizing that this may be the best I will ever feel for the rest of my life. It brought me to a place of understanding for medically assisted death for the first time. I wasn’t there… but I could understand it in a way I never had... and THAT was scary. I remember Ian and I sitting on the deck and looking at each other… I don’t remember who said it first but we both said that we felt like I didn’t have a lot of time left. So in true Ian fashion he asked “what trips do you want to take?” My first reaction was to have another Disney adventure with the kids and the second was to have another trip alone with Ian. After that late September conversation, we got to planning and anyone who follows our Facebook can see we succeeded. We have been living it up.
By the grace of God, I have gotten to a point that the skin condition feels manageable and this treatment had been working well. It really only has a median efficacy of 4 months. Going into Christmas, my tumour markers were up and my doctor was setting me up for treatment failure. He was talking about looking for clinical trials ect… and in my peer group, that does not instill confidence and hope. Unfortunately my Christmas had that dark cloud looming as I waited to go in for my CT scan in early January.
Waiting for that appointment in early January was one of the darkest weeks I have endured. I knew I was hitting the end of the road for treatment options and again I felt a loss of hope. I’ve come to realize how important hope is to your wellbeing (I am not a fan of the term “quality of life”). There are a lot of things you can endure when you have reasonable hope of it ending but when you believe that things not get any better than they are in that moment… it is a scary place to be. Even through some of my darkest days with depression, I knew that there were treatments and that people recover from this. But feeling pain and illness with reasonable expectations that things won’t get better is a darkness that is unparalleled.
That January CT appointment turned out to be such an answer to prayer. My scans were stable! I got another 3 month pass which carried us through our kitchen renovations (because we needed more stress in our lives lol) and to the other side of my vacation with Ian; a week long kid-free Caribbean cruise.
Once we returned I was due for my next et of scans. While I prayed hard for more good results, we unfortunately were not that blessed. I did get almost double the median efficacy out of this treatment, but it was still a hard pill to swallow. I had developed yet more spots in my lungs and some existing spots had gotten bigger. I got that news the Thursday before Easter weekend. My doctor said he would send my file to Princess Margaret Hospital (PMH) to see if I could be matched to any clinical trials, but he didn’t give me a sense that there was much going on. If there was no trial we could try my first chemo again as we were on the fence as to whether that had actually failed. Otherwise there are other medications that I could take that might keep things at bay for 2-6 months max. That was definitely hard news but I feel like I had almost processed all the really hard feelings 3 months prior, so while it was difficult I didn’t feel as devastated as you’d think.
My doctor told me that if PMH had something for me they would call me directly; if they didn’t, they’d call him. We set up an appointment for 3 weeks later to reconnect and review the game plan based on the PMH results. When I got a surprise call from my oncologist at 5pm a week later I was not expecting good news. As he often does, he shared the bad news first. I was not a match for any phase 2 or 3 trials HOWEVER I was a match for a phase 1 trial of Dostarlimab. He sounded almost excited as he asked if I remembered hearing about it in the news a few months ago. He told me that they want to see me Monday and to expect a call from them the next day. Of course I immediately googled the drug and sure enough it was part of an amazing study whose results were released last year (see link below).
That brings us to now and the rollercoaster of emotions I’ve been riding for a while now. I will be going into PMH tomorrow to find out what this means. Am I really in this trial? How often am I going to PMH? How does this work? (I have zero info right now)
All of this feels like such an answer to prayer and I want to thank everyone who has been keeping me and our family in your thoughts and prayers. Keep praying… and I’ll keep you posted.
P.S - RUNNING! Everything else aside… my running finally started to come back a couple months after finishing chemo. I’m now back to a sub 29min 5K and just finished a 10km run this weekend. While my CT looks like I aspirated an entire box of Nerds…. My lungs are still working well!
Shannon
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