I'm reading some really great things about this drug! I've already written about Adcetris on my family blog and how it is engineered specifically for Hodgkin's Lymphoma patients who have already failed chemo treatment AND an autologous stem cell transplant (from self). Fitting my situation perfectly! The average person taking the drug who has refractory Hodgkin's Lymphoma has done 9 treatments (each 1/2 hour long, 3 weeks apart). Peripheral neuropathy (numbness in hands and feet) seems to be the most annoying side-effect and the main reason why treatments are stopped, because patients can reach the point where the neuropathy can prevent use of the hands and might not completely reverse itself (though it usually does over time).
I was surprised to find the cost of EACH dose of Adcetris is over $13,000!! Multiplied by average of 9 treatments... over $100,000 drug! Crazy. What a wonderful thing it is to have insurance!! On top of this treatment I'm up for an allogenic bone marrow transplant which can run $150,000-$200,000. I'm astonished at the insanely high cost of all this medical stuff.
The biggest potential downfall of Adcetris is its ability to reactivate a virus that up to 59% of the general population is thought to carry (at least according to Wikipedia, for what that's worth), PML- a brain deteriorating virus. Wow! I have been tested for the antibodies that would suggest I am a carrier of the virus and will find out the results of that test next week. From what I've read there have been two deaths from this virus being reactivated so there is a warning on the drug now but I also think it's not a huge threat. My mom was taking Tysabri for Multiple Sclerosis and it carries the same warning on it. As far as I know she is not having her brain eaten from taking the drug! :)
I had a tough time finding personal accounts of this drug as it was approved so recently and the trials were quite small. I am making this post not only for friends and family to read up on other personal accounts of the drug if they want, but also to help others in their search for reviews of Adcetris because it was difficult for me find.
(some of the comments at the end of this post are interesting reads)
I hope these cancer fighters are okay with me sharing a link to their blogs (I didn't ask first...). I love that these people are documenting their fight- I think we could all benefit from reading each other's stories!