Johns Hopkins Visit

Thank you all for praying for our trip to Johns Hopkins on Wednesday! The travel was difficult, but overall the trip was helpful and worthwhile. They had several suggestions and thoughts on what my next steps might be. The easiest and most promising is doing another type of biopsy in the hopes that I might test positive for any expression of HER2/neu, which has a targeted treatment called Enhertu that has shown success against brain metastases. I've been tested for HER2/neu before with a tissue biopsy and had zero expression of HER2/neu, but Johns Hopkins felt like it was worth trying a liquid biopsy. A liquid biopsy has the potential to sample cells from all the tumors in my body, which means it might find something a tissue biopsy (which samples only one area) could not. The biopsy is also as simple (for me) as having blood drawn. I've already contacted my UVA oncologist about the liquid biopsy to see if I could get it done before we leave for England on Tuesday and am waiting to hear back on their attempts to rush order the kit to get it here in time.

They had some differing thoughts on what I should try next if Enhertu isn't an option for me. My UVA team has recommended two drugs taken in combo - carboplatin with Avastin. Johns Hopkins said carboplatin wouldn't have been their first thought for me because it usually works for the same population as another class of drugs I've already tried that didn't work at all for me. But doing Avastin with another chemo called paclitaxel could be a good option. I did paclitaxel in 2011 for my early-stage breast cancer, but it's one you can repeat, especially since it's been thirteen years since I did it.

I'll discuss these things with my oncologist when I see him October 8. He'll receive the full report on my visit to Johns Hopkins and be able to see all we discussed.

I did feel like it was time to ask how many more options I have left. They said there are still a number of drugs left to try but at this point they are all pretty difficult, like the drug I was just on. They said it's unlikely to be a matter of running out of drugs to try but of my body being worn down by the side effects, getting sicker and sicker, and eventually needing to stop treatment for that reason. It was hard to hear but good to know what I'm facing.

As always, thank you for your prayers! They are what enable me to keep pressing on with endurance this race that is set before me. <3