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February 4, 2014 at 7:53 pm #21786CraigGParticipant
Had some problems with breathing around Christmas, after too many tests they’ve determined I have (early-no heart damage) Pulmonary Hypertension. Now on new drug and Oxygen 24/7. With the O2 I sleep a lot better. My oncologist took me off the third study I was on, with EMR200066-006. I was responding, but he wanted me to deal with PH first.
Now I am about to start Zelboraf. After reading this forum I’m a little nervous about the side effects. We had been hoping to put me on a Merck MK3475 PD-1 study, but no open slots around here.
CraigFebruary 5, 2014 at 7:47 am #63479LesliParticipant
As others have noted, the recommended course, assuming you are BRaf positive, is a combination Braf/Mek inhibitor. I responded very well and very quickly to the Zelboraf/Mekinist combo. It seems more common, since last September when they were approved to prescribe as a combo, to combine the GSK combo (Taflinar/Mekinist). The combination has been shown to postpone progression for an average 5 months longer than just a Braf drug on its own.
From my experience, I can’t stress enough how important sun protection is while on Zelboraf. I suffered a “flash burn” from standing on my porch for 5 minutes. I had second degree burns on my legs and ended up living something like a mole rat for the three months I was on the Z/M combo. Rash, acne, sun sensitivity and aches in my legs were well worth the price of ratcheting back the cancer as quickly and as effectively as these drugs did. If you are lucky enough to be eligible to take them, I wouldn’t hesitate. Just be very careful around any UV light. Driving, sitting by a window or being outdoors requires vigilant sun protection. UV treated clothes, sunscreen and a hat are a “must.”Did I mention that I managed to acquire a sunburn through my clothes? That was demoralizing….!
Best of luck to you. LeslieFebruary 10, 2014 at 5:26 pm #63480Eileen LParticipant
Hi Craig. As Leslie indicated if you go the targeted therapy route using the Braf/MEK combo is what is currently recommended. The FDA recently approved the GSK drugs for combined therapy. Also these drugs have a different side effect profile then the Roche BRAF inhibitor. No sunburn problem but more problems with fevers.
Good luck to you!
EileenFebruary 10, 2014 at 5:35 pm #63481Catherine PooleKeymaster
I would definitely look to the combo and move away from zelboraf alone. Also, the Novartis combo is quite promising. You can see their trials at:
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