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February 6, 2013 at 12:25 am #20997jmmmParticipant
I know there are many people struggling right now, and I almost feel guilty posting this, but I’m hoping this good news will give someone hope. My husband has been on Zelboraf since October 2011 (yes, that’s almost 16 months!), and today we walked out of the Oncologist’s office with a CT scan showing NED and a brain MRI showing NED! With the exception of dealing with brain necrosis for the past 6 months, he has had no cancer related issues for over a year. He still struggles with constant joint pain, exhaustion and extreme sun sensitivity from the Zelboraf, but he says it’s totally worth it to keep the cancer away. We know it’s not permanent, but for today, we’re hopeful and grateful.February 6, 2013 at 12:30 am #58984PatWParticipant That is wonderful news! It is definitely encouraging to know that Zelboraf can be effective for months and months (perhaps years? ). Thank you for taking the time to post. Tell your husband to just keep doing what he’s been doing.February 6, 2013 at 2:28 am #58985dkmcParticipant Hey it is the good news that gives such hope. Don also remains NED 16 months after his stage 4 diagnosis. 10 months and counting since all clear after completed Ipi! In April it will be 4 years since stage 3 diagnosis. I don’t know what I would have done without this forum.
Thank you for posting : )
KarenFebruary 6, 2013 at 2:28 am #58986NYKarenParticipant
So happy for you both. I’ve had a pretty dramatic response to Zel, about to re-start 6 pills daily after a 2-week break. Has your husband been on the full dose the entire time? Had he had any breaks?
Please don’t feel guilty, not only are people happy for you, but we can glean information from you too!
Have fun celebrating.
KarenFebruary 6, 2013 at 5:34 am #58987abdormaParticipant
That is great news, Karen. Celebrate!!!! Hope Don continues to respond and that his side effects lessen!
AnnFebruary 6, 2013 at 12:03 pm #58988jmmmParticipant
Just a little history for those interested (or needing some hope)…stage 1 in 1997, stage 4 in 1/2011, small bowel ressection 1/2011, thoracotomy 2/2011, Yervoy 5/2011-7/2011 (all 4 doses in 12 weeks with np side effects), started Zelboraf 10/2011, craniotomy 11/2011, gamma knife 2011…no treatmen except Zelboraf since then. He’s on 3 pills, twice a day…no missed doses ever (except during surgery). It’s not been an easy path, but he’s making it and is still here to help me raise our 3 school-age boys. There is hope and life with cancer (although some days, we’re still trying to other that out:)).February 6, 2013 at 4:04 pm #58989Dick_KParticipant Your post title says it all, congratulations.
DickFebruary 6, 2013 at 4:35 pm #58990AnonymousGuest
Fantastic Karen! You’ve got to feel quite giddy now. Enjoy the relief.
You know, I wonder if sequencing the Zel a while after the IPI might be a smart thing to do and be a factor for your wonderful NED status. I mean, the IPI cranks up the immune system, then the Zel starts killing the cancer off in significant amounts. The dying cancer gives off antigens which the cranked up immune system zooms in on, completing and sustaining the cancer killing process. Generating an immunity system “tipping point” so to speak.
What’s nice is that both Zel and IPI are approved in the US so the onc can prescribe both. It might also be interesting to see if you can get an IPI reinduction.
Maybe our experts can comment.
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