So the last few months have been pretty uneventful, but Riley's GI symptoms continue to persist. They have lessened since lowering her dose, but are still present. I think the hardest part is that symptoms can come on suddenly and ferociously with no time to plan or prepare. This has caused deep anxiety for Riley and at this point she pretty much refuses to get in the car and go anywhere. She met with her social worker a week or ago and we are moving towards a therapy plan. This is just as important as her daily med and so needed when her life is turned upside down and it feels like no one understands or really gets it. Jaron and I can say we understand, but we just don't. She does not feel like herself and on top of a pandemic and all its restrictions, every day feels hard and lonely.
We had her neuro-oncology appointment today and due to her continued GI symptoms, they are giving her another break from medication and will be switching her to a new oral chemo med - Solumetinib. This drug was FDA approved in April of this year, but her doctors have a lot of experience with it as there was a large trial done at Stanford. This drug is similar to Trametinib as it is also an MEK inhibitor and still targets Riley's specific tumor mutation (BRAF fusion). We should not lose any time in our chemo regimen by switching meds, which was a worry of mine. Her oncologists said they have actually seen greater shrinkage of tumor with this med so we cross our fingers and carry on.
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