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Zelboraf Approved for V600R upon Appeal; Update on Don Lee

Forums Caregiver Community Zelboraf Approved for V600R upon Appeal; Update on Don Lee

  • Post
    Janet Lee
    Participant

      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

    Viewing 20 reply threads
    • Replies
        Hstevens0072
        Participant
          It sounds like things are finally going in the right direction. I am happy for you. I see the Wizard – Dr Ibrahim on Tuesday as well 🙂
          Best of luck!
          Holly
          Hstevens0072
          Participant
            It sounds like things are finally going in the right direction. I am happy for you. I see the Wizard – Dr Ibrahim on Tuesday as well 🙂
            Best of luck!
            Holly
            Hstevens0072
            Participant
              It sounds like things are finally going in the right direction. I am happy for you. I see the Wizard – Dr Ibrahim on Tuesday as well 🙂
              Best of luck!
              Holly
              Janet I am very happy about this development, and I am glad you didn’t need lagal action like I recommended. Go see Dr. Flaherty, whatever else you do…he and his team are the leading edge…he is in NEJM like a correspondent anymore. I am in month 28 in one of his many and varied trials. Feels like I am in the bosom of Abraham when I am with him or Dr. Lawrence.
                Janet Lee
                Participant

                  Well, it did take a long time, John, but glad we did succeed eventually and without legal help.

                  Would you suggest we see Dr. Flaherty now, while Don is in early stages of using Zelboraf? (We're not even sure yet if it's working, but my gut and hope says it is.)

                  Janet

                  Janet Lee
                  Participant

                    Well, it did take a long time, John, but glad we did succeed eventually and without legal help.

                    Would you suggest we see Dr. Flaherty now, while Don is in early stages of using Zelboraf? (We're not even sure yet if it's working, but my gut and hope says it is.)

                    Janet

                    Janet Lee
                    Participant

                      Well, it did take a long time, John, but glad we did succeed eventually and without legal help.

                      Would you suggest we see Dr. Flaherty now, while Don is in early stages of using Zelboraf? (We're not even sure yet if it's working, but my gut and hope says it is.)

                      Janet

                      Yes, I do. The more knowledge you have, the better off both of you will be. You both need continued hope right now and Dr. Flaherty is full of evidence based, real hope. It will do you good to meet him…get up to Yawkey 9E, as soon as you can.I realize Don’s oncologist has gone to bat for him, but there should be no ego problems when we are dealing with life and death. I would be proud to have the likes of Dr. Flaherty endorsing my judgment and offering to help if I were in Don’s current doctor’s shoes.
                      Yes, I do. The more knowledge you have, the better off both of you will be. You both need continued hope right now and Dr. Flaherty is full of evidence based, real hope. It will do you good to meet him…get up to Yawkey 9E, as soon as you can.I realize Don’s oncologist has gone to bat for him, but there should be no ego problems when we are dealing with life and death. I would be proud to have the likes of Dr. Flaherty endorsing my judgment and offering to help if I were in Don’s current doctor’s shoes.
                      Janet Lee
                      Participant

                        Thank you ag ain for the kind, encouraging, and extremely helpful comments.

                        Janet

                        Janet Lee
                        Participant

                          Thank you ag ain for the kind, encouraging, and extremely helpful comments.

                          Janet

                          Janet Lee
                          Participant

                            Thank you ag ain for the kind, encouraging, and extremely helpful comments.

                            Janet

                            Yes, I do. The more knowledge you have, the better off both of you will be. You both need continued hope right now and Dr. Flaherty is full of evidence based, real hope. It will do you good to meet him…get up to Yawkey 9E, as soon as you can.I realize Don’s oncologist has gone to bat for him, but there should be no ego problems when we are dealing with life and death. I would be proud to have the likes of Dr. Flaherty endorsing my judgment and offering to help if I were in Don’s current doctor’s shoes.
                          Janet I am very happy about this development, and I am glad you didn’t need lagal action like I recommended. Go see Dr. Flaherty, whatever else you do…he and his team are the leading edge…he is in NEJM like a correspondent anymore. I am in month 28 in one of his many and varied trials. Feels like I am in the bosom of Abraham when I am with him or Dr. Lawrence.
                          Janet I am very happy about this development, and I am glad you didn’t need lagal action like I recommended. Go see Dr. Flaherty, whatever else you do…he and his team are the leading edge…he is in NEJM like a correspondent anymore. I am in month 28 in one of his many and varied trials. Feels like I am in the bosom of Abraham when I am with him or Dr. Lawrence.
                          NYKaren
                          Participant
                            Janet,
                            My only reaction is that I’m thrilled for you both!
                            Congratulations; your perseverance paid off!
                            Karen
                              Janet Lee
                              Participant

                                Thank you, Karen. You are part of the warriors I felt supported me and helped me to keep going…

                                Janet

                                Janet Lee
                                Participant

                                  Thank you, Karen. You are part of the warriors I felt supported me and helped me to keep going…

                                  Janet

                                  Janet Lee
                                  Participant

                                    Thank you, Karen. You are part of the warriors I felt supported me and helped me to keep going…

                                    Janet

                                  NYKaren
                                  Participant
                                    Janet,
                                    My only reaction is that I’m thrilled for you both!
                                    Congratulations; your perseverance paid off!
                                    Karen
                                    NYKaren
                                    Participant
                                      Janet,
                                      My only reaction is that I’m thrilled for you both!
                                      Congratulations; your perseverance paid off!
                                      Karen
                                      awillett1991
                                      Participant
                                        Janet. – so glad this all worked out and I’m glad Don is feeling better. I believe they cancelled the clinical trials of Ipi & Zel at the same time due to liver toxicity and are focusing on how best to sequence them. Definitely worth asking about. I did it anyway, no picnic I tell you.

                                        You have done a wonderful job care taking, researching, battling, and making back-up plans. Maybe rest a bit and enjoy Don’s improvement!!

                                        God Bless,
                                        Amy

                                        awillett1991
                                        Participant
                                          Janet. – so glad this all worked out and I’m glad Don is feeling better. I believe they cancelled the clinical trials of Ipi & Zel at the same time due to liver toxicity and are focusing on how best to sequence them. Definitely worth asking about. I did it anyway, no picnic I tell you.

                                          You have done a wonderful job care taking, researching, battling, and making back-up plans. Maybe rest a bit and enjoy Don’s improvement!!

                                          God Bless,
                                          Amy

                                          awillett1991
                                          Participant
                                            Janet. – so glad this all worked out and I’m glad Don is feeling better. I believe they cancelled the clinical trials of Ipi & Zel at the same time due to liver toxicity and are focusing on how best to sequence them. Definitely worth asking about. I did it anyway, no picnic I tell you.

                                            You have done a wonderful job care taking, researching, battling, and making back-up plans. Maybe rest a bit and enjoy Don’s improvement!!

                                            God Bless,
                                            Amy

                                              Janet Lee
                                              Participant

                                                Hmmm, interesting thought, Amy. Maybe it's time we actually took that trip to Florida that we've cancelled 2 or 3 tmes now? I can't wait until he's home! As I said to Karen in previous post, I could not have done any of this without you all here on this board helping, supporting, and teaching.

                                                Janet

                                                Janet Lee
                                                Participant

                                                  Hmmm, interesting thought, Amy. Maybe it's time we actually took that trip to Florida that we've cancelled 2 or 3 tmes now? I can't wait until he's home! As I said to Karen in previous post, I could not have done any of this without you all here on this board helping, supporting, and teaching.

                                                  Janet

                                                  Janet Lee
                                                  Participant

                                                    Hmmm, interesting thought, Amy. Maybe it's time we actually took that trip to Florida that we've cancelled 2 or 3 tmes now? I can't wait until he's home! As I said to Karen in previous post, I could not have done any of this without you all here on this board helping, supporting, and teaching.

                                                    Janet

                                                    NYKaren
                                                    Participant
                                                      Janet, can I come to Florida with you? The groundhog was definitely wrong this year.
                                                      Seriously, thanks for the kind words–I forgot to mention, don’t be too concerned if the doc keeps your husband’s dose at 3/3; that 2-pill-a-day reduction seems to make a big difference in side-effects for many, myself included, while still being effective.
                                                      Be well,
                                                      karen
                                                      NYKaren
                                                      Participant
                                                        Janet, can I come to Florida with you? The groundhog was definitely wrong this year.
                                                        Seriously, thanks for the kind words–I forgot to mention, don’t be too concerned if the doc keeps your husband’s dose at 3/3; that 2-pill-a-day reduction seems to make a big difference in side-effects for many, myself included, while still being effective.
                                                        Be well,
                                                        karen
                                                        NYKaren
                                                        Participant
                                                          Janet, can I come to Florida with you? The groundhog was definitely wrong this year.
                                                          Seriously, thanks for the kind words–I forgot to mention, don’t be too concerned if the doc keeps your husband’s dose at 3/3; that 2-pill-a-day reduction seems to make a big difference in side-effects for many, myself included, while still being effective.
                                                          Be well,
                                                          karen
                                                        aldakota22
                                                        Participant

                                                          Persistince pays off. Know it was a very stressful road but thank God, Don is on "Z" and it it is working.All the best in his traetment.Beat the Beast.  Al

                                                          aldakota22
                                                          Participant

                                                            Persistince pays off. Know it was a very stressful road but thank God, Don is on "Z" and it it is working.All the best in his traetment.Beat the Beast.  Al

                                                            aldakota22
                                                            Participant

                                                              Persistince pays off. Know it was a very stressful road but thank God, Don is on "Z" and it it is working.All the best in his traetment.Beat the Beast.  Al

                                                                Janet Lee
                                                                Participant

                                                                  Thank you, Al.

                                                                  Janet

                                                                  Janet Lee
                                                                  Participant

                                                                    Thank you, Al.

                                                                    Janet

                                                                    Janet Lee
                                                                    Participant

                                                                      Thank you, Al.

                                                                      Janet

                                                                    Richard_K
                                                                    Participant
                                                                      Thanks for posting the update, very welcome news on all fronts. Best of luck to you both.
                                                                      Dick
                                                                      Richard_K
                                                                      Participant
                                                                        Thanks for posting the update, very welcome news on all fronts. Best of luck to you both.
                                                                        Dick
                                                                        Richard_K
                                                                        Participant
                                                                          Thanks for posting the update, very welcome news on all fronts. Best of luck to you both.
                                                                          Dick
                                                                            Janet Lee
                                                                            Participant

                                                                              Thank you, Dick. I just looked at your profile and saw that you've been on Zelboraf for over 25 months!?! Why does everyone talk about 6 months and the melanoma becomes resistant to Z? That is awesome for you, and keep up the good work!

                                                                              Janet

                                                                              Janet Lee
                                                                              Participant

                                                                                Thank you, Dick. I just looked at your profile and saw that you've been on Zelboraf for over 25 months!?! Why does everyone talk about 6 months and the melanoma becomes resistant to Z? That is awesome for you, and keep up the good work!

                                                                                Janet

                                                                                Janet Lee
                                                                                Participant

                                                                                  Thank you, Dick. I just looked at your profile and saw that you've been on Zelboraf for over 25 months!?! Why does everyone talk about 6 months and the melanoma becomes resistant to Z? That is awesome for you, and keep up the good work!

                                                                                  Janet

                                                                                Cielo
                                                                                Participant

                                                                                  Still hoping and praying for the best.   I'm happy for you Janet.

                                                                                  Cielo

                                                                                    Janet Lee
                                                                                    Participant

                                                                                      Thank you, Cielo. And I continue to do the same for you and your husband.

                                                                                      Janet

                                                                                      Janet Lee
                                                                                      Participant

                                                                                        Thank you, Cielo. And I continue to do the same for you and your husband.

                                                                                        Janet

                                                                                        Janet Lee
                                                                                        Participant

                                                                                          Thank you, Cielo. And I continue to do the same for you and your husband.

                                                                                          Janet

                                                                                        Cielo
                                                                                        Participant

                                                                                          Still hoping and praying for the best.   I'm happy for you Janet.

                                                                                          Cielo

                                                                                          Cielo
                                                                                          Participant

                                                                                            Still hoping and praying for the best.   I'm happy for you Janet.

                                                                                            Cielo

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