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February 18, 2013 at 9:18 pm #21030odonoghue80Participant
Hi, just doing some brainstorming and proactive thinking and wondering if anyone else has done this:
I am considering stopping Zelboraf and possibly doing IL-2 or biochemo (I would prefer TIL but I did have a brain met in December – gamma knife radiation).
My reasoning is I have been having difficulty tolerating Zelboraf, but at the same time my first scan did show positive results and my tumors shrunk. I’m hoping to continue this trend and ideally would like to be NED or at my lowest tumor burden before switching. Being only 33 I still have the optimistic goal of a cure, and with that I want a full cure and to be off meds. While Zelboraf is working for now (I started 12/24/12) I do know the typically the melanoma tumors will grow resistant and come back stronger.
I did have a consultation with an onc who suggested I do this soon before the uptick in regrowth. My current onc would not suggest this until Zelboraf definitely not working and then would like to roll onto Zelboraf/MEK trial. I’m thinking about consulting with MD Anderson as well. I’m still early in Zelboraf terms I think so just trying get proactive thought/discussion going.
Any thoughts and anybody successfully try this method?
ShaneFebruary 18, 2013 at 9:56 pm #59231KarinBParticipant
My dad had a metastasis in his stomach and started Zelboraf in September last year. Within 2 months the tumor was nearly gone (measuring 7cm at start) and the docters decided to surgically remove the last small remaining part. This happened mid December and together with the surgery he stopped taking Zelboraf. The surgery was succesful and last week he had his first scan again and he currently is NED! Not sure if surgery will be an option for you as well, but maybe you can discuss it with your docters?February 18, 2013 at 10:04 pm #59232AnonymousGuest
It’s always good to have plan B or even plan C ready to go with this disease.
Actually, having a brain met may not automatically exclude you from TIL (or other trials for that matter) as long as its been treated (which it has) and is at least stable from the previous scan. I imagine you’re coming up on your next scan shortly. Also Zelboraf has been shown to be fairly effective for brain mets for some people.
In addition, there has been some buzz lately that staggering or programing “breaks” in the Zelboraf treaments may be effective in prolonging the resistance free response to the drug.
Man, it still impresses me that there are real choices popping up for treatments of this traditionally hard to treat disease.
Hopefully others will chime in.
JeffFebruary 18, 2013 at 10:07 pm #59233Catherine PooleKeymaster
I don’t see any reason why you can’t go for the TIL. But maybe you should think about the BRAF/MEK combo that is up for approval soon. If you’re going to endure IL2, than I would go for the TIL therapy. Biochemo is not being prescribed in many locations because it is terribly toxic and has little response. Also, as Jeff mentioned, sometimes a little break from Zelboraf and then resuming it can help with side effects and response. Whatever you choose we are here to support you.February 19, 2013 at 6:36 pm #59234erinmay22Participant
Like Jeff said it’s good to have a plan b, c… when my doctors started me on Zelboraf their plan was only to keep me on it for 4-5 months. Thought being to use Z to shrink what I had and either do surgery and/or start Ipi. I did both since after 4 months I did have growth again on Z.
Will be curious to hear what your onc thinks. Knowing that for most, Z doesn’t give a long term durable response – it’s good to get things under control and attempt to do something that has a longer response! I went to Ipi. 12 weeks scans in Dec showed growth but scans in Jan to get in the trial showed shrinkage… so hoping it’s working! And I have now done 2 doses of pd1!
Hang in there! and keep us posted!
ErinFebruary 20, 2013 at 11:44 pm #59235PatWParticipant
Shane, I think getting off Zelboraf and onto something with a better chance of having a long-term effect is a good idea. Zelboraf and other BRAF inhibitors are great for quickly shrinking life-threatening tumors, including brain tumors. But as you know, the effect wears off in some months. For many people, not everyone, when the tumors become resistant the come back more aggressive than before. Based on my brother’s experience, I would NOT wait until one or more tumors start growing again. You have to go off Z for 3 or 4 weeks before starting most other treatments, and a lot of tumors can start growing again during that time, including brain tumors.
Since you already tried ipi, I think my first choice would be anti-PD-1. Then the BRAF/MEK combo Katherine mentioned. I don’t know much about TIL, but since you are young and healthy, that may be a good option, too. But you are wise to plan to change treatments now while your tumors are shrinking and your brain met has been zapped by a Cyberknife. Good thinking!
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