I typically turn to “Dr Google” when I have a question and if it’s medical related, one of the first results is usually the Mayo Clinic. I find their site quite helpful in laying out information and turn to it often. So when I heard it was a top cancer hospital, I was excited to visit them. Their campus is massive but their check-in process is quick and everyone is quite friendly.
We learned a lot today. It’s interesting to hear the perspectives on my disease and what the next steps are. This was the last visit we had planned and although I totally slacked on uploading my recent documents (oops, thankfully they are working to get them!), it could not have come at a better time with my recent progression. We talked for well over an hour and the doctor was wonderful and very kind. She even gave me tips on how to organize my records!
We talked a lot about trials and some of the trials that are out there now. Immunotherapy is the big topic of discussion lately and a lot of them focus on triple negative breast cancer. Many of them also are specific to a particular genetic marker.
After I asked my doctor about my skin two weeks ago, they requested my brain tumor to be sent off for additional genetic testing. This testing will indicate what specific markers my tumor has, what would potentially fight off those markers AND what centers have clinical trials open for them. That being said, I can make a decision today about a clinical trial but it would be TN only, not a targeted therapy specific to my markers. So it makes sense for me to wait. I was advised it takes 2 – 3 weeks and it’s been 2 so the test should be back soon.
I anticipate progression while waiting. One of my questions was whether I should continue Xeloda because it may be working in other areas. She agreed that is is possible but one of the concerns that oncologists have when cancer grows despite treatment is that the treatment (Xeloda) may actually be feeding my cancer and helping it to grow. No thanks.
I also cancelled my scans for tomorrow. I learned that the scans are not necessary for trial assessment but also that trials require that I have scans within a certain time frame of beginning, which is typically a week or two. No reason to expose myself to additional radiation. I also learned that the Xgeva (which I’ll take forever because of my bones, from what I understand) can potentially cause me to light up like crazy because it is going to work on my bones. This would cause a false positive result, which I certainly don’t want. I was also advised that my bones have holes in them from the cancer, so I need to be careful (especially with little man) because I can potentially break a bone doing something as simple as catching Jacob. Yikes.
We also talked a lot about quality of life and what that means with different treatment options. I think it’s an important conversation to have no matter what.
I know we learned more but that’s all for now. I’m tired and there’s more to come. No treatment makes me nervous but I also think it’s important to have all the information before making a decision, and that includes my genetic markers.
Today was a really good day of learning and I’m so glad for the visit! 💚