Background: Don was denied coverage for Zelboraf by our BC/BS Federal Employee Insurance Plan on February 11, 2013.
Thrilling news this week is that our appeal to the Office of Personnel Management in Washington DC was APPROVED! This is a little anti-climactic, since Genentech agreed to provide Zelboraf to Don 2 weeks ago. However, it is our sincere hope that this victory will pave the way for other non-V600E BRAF-positive patients.
Background: Don was denied coverage for Zelboraf by our BC/BS Federal Employee Insurance Plan on February 11, 2013.
Thrilling news this week is that our appeal to the Office of Personnel Management in Washington DC was APPROVED! This is a little anti-climactic, since Genentech agreed to provide Zelboraf to Don 2 weeks ago. However, it is our sincere hope that this victory will pave the way for other non-V600E BRAF-positive patients.
Don continues to do extremely well at the rehabilitation center. After 3 weeks, his strength and stamina have improved phenomenally. He's been on the Zelboraf for two full weeks. When he started the Z, he was extremely weak and almost completely bedridden, so his oncologist started him on 3 pills every 12 hours. In those two weeks, he has progressed to walking with the assistance of a walker, has been practicing on stairs, and his wit, intelligence, and sense of humor have bounced back 100%.
Looking at these two paragraphs, they seem so "short." But you all know the emotion and stress and huge amount of effort on the part of both patient and caregiver that underlies every single word.
I just realized that I had never updated Don's Treatment profile since I joined this community, so it has now been updated with the events that have happened over the past 2 1/2 months since getting the diagnosis. What a ride it's been…
We return to Dana Farber on Tuesday, April 2. They are not going to believe how well he's doing. I'm wondering if Dr. Ibrahim will increase his Zelboraf dose.
I am hoping to have a conversation with Dr. Ibrahim about Plans B and C… Don did have one infusion of Ipi before all hell broke loose and he became partially paralyzed, had brain sugery, and conquered rehab. Don't know if she will entertain continuing with Ipi while he's on Zelboraf (I believe we might be able to get 3 more doses in within the 16-week window). Is this something we should be asking about?
I have also been in touch with Dr. Keith Flaherty at Mass General who is willing to see Don for another opinion/options. Here's what his nurse conveyed to me just yesterday:
"Dr. Flaherty suggests that your husband can plan to be evaluated here either at the first suggestion of tumor growth on his scans from this point forward or, alternatively, to come to see him while still on therapy and responding. This allows for a general discussion of options. The only disadvantage of the earlier visit is that the clinical trials are evolving so rapidly that he theoretically would go on might be closed when he he would need them but others might be available."
Any reactions to this?
Positive thoughts, enormous thanks, and love to you all.
Janet Lee
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