Update on My Recent Medical Tests – Mixed Results, but probably some progression

Hello everyone,

I wanted to provide a quick summary of recent developments, particularly for those who might have missed my previous updates. As you remember, my journey through 2023 with three successful protocols ended with a hiccup in January 2024 when I found out the critical medication (DON) I needed was unavailable. It was back in stock by February 23rd, and I completed a protocol without the usual side effects that signal its effectiveness. This leaves me unsure if the medication worked or might have been counterfeit – a mystery to this very day.

In April, a PET scan showed some continued remission in my bones, which was encouraging. However, it also flagged a node in my groin that needs monitoring. It wasn’t a significant decrease, but I still saw it as relatively good news. I can’t help but wonder if the peak of remission might have been in January, right after my last notably effective protocol. The uncertainty of February’s treatment and a break in March, where I indulged in delicious Italian pastries, might have influenced some regrowth. Then, because of the timing, what looked like remission in April was the remnant of what would have had a more significant remission in January.

Fast forward to the first week of June: I had my routine CT and Bone Scan. The CT, as usual, didn’t reveal much – it’s notoriously unhelpful. The Bone Scan, on the other hand, indicated some progression, which is a bit disheartening. I’ve attached both results for those who are curious.

Interestingly, this might be an opportunity to discuss the effectiveness of diagnostic tools with the cancer clinic. The contrasting results within the same month could highlight the limitations of CT and Bone Scans compared to PET scans, as noted by my doctor. They will consider reviewing these facts with the board and may be able to get me MSP-funded PET/CT Scans. Hopefully, this might improve diagnostic support without needing more out-of-pocket expenses.

Unfortunately, a week later, my monthly bloodwork showed an increase in my CA15-3, a tumour marker for breast cancer, suggesting that the contradicting results might be proper progression. I haven’t met with my doctors since getting those blood results, so I’ll have more insights in a couple of weeks.

Despite these challenges, I’m optimistic. Thanks to the incredible support from all my go-fund-me donors, I have access to DON again and am ready to begin another protocol. With enough medication for two consecutive protocols, we’re in a solid position to test the efficacy of this treatment further.

Let’s see what the next couple of protocols can accomplish. Thank you all for your continued support and encouragement. It’s time to buckle up – the journey continues tomorrow!