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April 30, 2013 at 6:53 pm #21226jmmmParticipant
I know I asked this 6-8 months ago, but I wanted to hear about any current research. My husband has been on Zelboraf for 18 months and it’s still working:) His oncologist (who is a melanoma specialist) has been encouraging him to stop the zelboraf for months. Today was another discussion about it. He is really pushing for him to stop, but our theory is that whatever he is doing is working, so why change it. My husband feels so much better being on the medication and seems to be tolerating the side effects fine. I know not many people can stay on it this long, but for those who do, what are other oncologists recommending now?April 30, 2013 at 7:48 pm #60295PatWParticipant Why does your husband’s doctor want him to stop Zelboraf? Is he recommending that your husband try something else instead or just go off Zelboraf and wait for the melanoma to return? Please clarify.April 30, 2013 at 8:10 pm #60296jmmmParticipant I think his thought process is that my husband has been stable with no evidence of disease for a year. We’re not absolutey sure why he wants him to stop it. I think it’s mostly to see if he will progress without it, or if he’ll stay stable. Kind of a scary thought. He just got home from a conference where they had some discussions about this. At least that’s what I understand. He does know Zelboraf well…he did one of the trials with it. The longest he had anyone on it (through the trial) is 2 years before he progressed.April 30, 2013 at 8:18 pm #60297Dick_KParticipant I’m on Zelboraf 37 months as part of the phase II trial. Both my doctor and I agree with staying on the medicine. Our thought is “it’s working, side effects are tolerable, why stop?”
DickApril 30, 2013 at 8:56 pm #60298PatWParticipant
Before you can make an informed decision about this, I think you need to clearly understand your doctor’s reasoning. If he has a lot of experience with Zelboraf and is keeping up with emerging trends and new information about the treatment, he may well have very sound reasons for urging your husband to stop taking it. You owe it to yourself to understand those reasons. Don’t let the doctor snow you with jargon or statistics; get him to explain his thinking to you using plain English.
Whether your husband decides to stop Zelboraf now or to continue, you should probably have a pretty clear idea of what you will do when/if the melanoma becomes resistant to Zelboraf. What will be your plan B? Ipi? Anti-PD1? A treatment now in clinical trials? Obviously, your plan B will change as treatments evolve– new treatments may be FDA approved, other new treatments will begin clinical trials, etc. so your plan may change over time. But if at his next scheduled scans the doctors see one or more tumors starting to grow, what will you do? Having a plan B and even a plan C in mind is a very good strategy. Knowing what your options are now might help your husband make this decision.
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