Thank you all for the support after my last post about the rough start to treatment. I appreciate all the messages as well as food that has now filled my fridge! I've realized this has become the primary means most people receive updates regarding how I am feeling. After seeing a lot of people this …
Plan A (IDH2 Inhibitor) is a go: Precision Medicine and Privilege
In my last treatment post, Uncharted Waters: waiting for a treatment plan, I outlined three treatment options: Plan A: IDH2 Inhibitor Plan A-: Immunotherapy Plan B: Reirradiation and CCNU chemotherapy Over the past few weeks we have been waiting for two factors to determine which treatment plan I could do: insurance coverage and my genetic test …
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Uncharted Waters: waiting for a treatment plan
In my last post, Sailing New Seas: My Biopsy Results and The Need For a Cure, I recounted my experience receiving news that my tumor has evolved to a grade III anaplastic oligodendroglioma. Given this news, the path of treatment is uncertain. UCSF's tumor board had one recommendation while my doctors in Boston had an alternative view. Each opinion is equally reasonable. The difference lies in the fact that I am now in uncharted waters. There's no map navigating me to my destination. In fact, no one truly knows where we're heading. All I know after receiving my results was I needed to find a captain for my ship, so I headed back to Boston to see Yoda.
Treatment Meetings and Plan
Warning: This post is long! This is not the usual post where I dive into the emotional aspects of my experience. Rather, this is a pretty cut and dry description of my three weeks of meetings and calls to develop a treatment plan. During my 2014 recurrence, I wrote a similar (...yet less detailed) post about treatment decisions. I received a lot of messages from patients and family members of patients who found that post helpful. This is for that audience. My hope is that this very detailed explanation of my treatment meetings may shed some light on how much information is involved in informing a treatment plan. While I share a lot of detail, I want to note that this is my experience. Every individual's situation and decisions will be unique to them.