Today Steve starts BB1608, which is the trial drug and one of two he will be taking for treatment. They start one drug at a time to gauge side-effects. Kind of a strange feeling to take a medication and then wait to see what will happen, but Steve doesn’t seem phased by it. The other drug is called regorafenib and he’ll start it in five days. This is a drug used widely in the UK, but newly approved in the US. On it’s own, it wasn’t a good match for Steve, but in combination with the BB1608, it is shown to be very effective. The regorafenib alone is $1,600 a month and that’s after insurance. We are fortunate to have wonderful insurance and have met our deductible so no copays are left to pay. Steve’s employer is Van Meter and we encourage anyone in need of electrical supply to visit them as they have been beyond wonderful to us.
The study involves a lot of documentation. Steve has four forms that he needs to fill out to monitor and document his side-effects. He’s not overwhelmed by this at all and told me that I don’t need to worry about the paperwork. I tend to jump in and want to over-care for him, but have learned boundaries through all this and know not to treat him like a child…most of the time. We got laughing last night as we talked about the different things he has to document. I told him that I was going to keep my own documentation chart noting things such as flatulence, corny jokes, and excessive hugging. He didn’t think they’d be interested in my research, but I will continue to verbally document things using a time code and eye roll. (smile)
Thank you for your prayers and support. Keep in touch as we look forward to your emails, messages, phone calls (thank you to Audrey for calling all the way from the Netherlands!), and just general friendship and love. Have a wonderful day…more later!
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