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December 13, 2012 at 8:20 pm #20850
I haven’t been posting for a while, but do drop by to read how everyone’s doing.
I read here that someone re-tested positive for BRAF, so i figured that I had no idea when my mel was tested, i.e. what it from my first slides, was it from my recurrence? So I asked Dr. Wolchok of I could be re-tested…bottom line is that I am BRAF positive! When he called me last night, I burst out in tears on the phone, and I was hiding in a corner while I was working!
I’m going Monday for some bloodwork and a meeting with Dr. W’s nurse to learn the drill on Zel, which I’ll be starting when it comes in the mail. Yipee!!!!!!!!
Also, as some of you know, I’m on a DPCP trial at Rockefeller University Hospital.
I was there this morning for a biopsy, and they decided that for MY benefit, because it won’t benefit the trial anymore, I can remain on the DPCP. So we’ll be hitting the mel with a double-whammy.
I’m worried about side-effects, but having been through Ipi-induced colitis, adrenal insufficiency, and IL-2, I can probably tolerate whatever comes my way. I just hope that nothing will cause me to have to stop it. But, we’ll cross that bridge when we come to it.
I’ll be posting on the Stage III forum as I am IIIc unresectable.
To whoever first posted about re-testing, THANK YOU, THANK YOU, THANK YOU!
I’ll keep you posted.
Happy holidays to all,
KarenDecember 13, 2012 at 8:25 pm #58039
Ah yes, I see it was Mary Sue. THANK YOU, MARY SUE!!!
To answer one of your questions, Dr. W. said it could possibly be because there is a new test being used.
KarenDecember 13, 2012 at 9:26 pm #58040Catherine PooleKeymaster
Dr. Flaherty said if you ARE Braf positive you definitely are. But it may be worth it for folks to get retested I’m thinking..and ask for NRAS testing too!December 14, 2012 at 12:43 am #58041 Catherine, what I meant was that maybe the new test being used is more sensitive??December 14, 2012 at 1:32 am #58042Catherine PooleKeymaster Oh, I am not disagreeing. I’m just saying when the test shows you are positive, there’s no doubt. But when it is negative there could be doubt. I would guess we now have to ask what type of test they are using. Possibly the newer tests are improved but I haven’t heard that. I know that Genentech had their Braf testing approved by the FDA along with Zelboraf. Also, wanted to advise folks to get NRAS testing if they are BRAF negative. The MEK drug seems to have efficacy for the NRAS positive folks.December 14, 2012 at 2:47 am #58043msue5Participant Karen
I am glad my post about being re-tested helped someone else. I didn’t even know that my Onc was repeating the test. I was also tested for NRAS but don’t know the results. When I found out I was Braf pos I was so shocked and so happy it reminded me of finding out I was pregnant after trying for 2 1/2 yrs. Previously I was not eligible for any trials due to my lupus and Braf neg. I am thinking I am going to try Yervoy first despite my Lupus. 6 week scan after 2 thoracic surgeries showed a new node or nodes? that showed up. The radiation Onc thinks I need something systemic after I get cyberknife to new area and surgical bed that was only partially resected. He said since there was new disease in only 6 weeks it is clearly on the move. I hope that our posts will also help others who find themselves in a similar situation. I am going to save Zelboraf for a time when I have a larger tumor load or if Yervoy is unsuccessful or causes a major lupus flare up. I go next Fri for simulation set up for Cyberknife. Let us know how Zelboraf goes.December 14, 2012 at 4:36 am #58044msue5Participant
I forgot my other amazing news. New granddaughter born yesterday. 12/12/12 at 3:33 pm! Not likely to forget that birthday. Grandchild # 7! I wondered. When I have the Cyberknife will it be safe to be near the baby? I will ask Radiologist next Fri but wondered if anyone knew?
Mary SueDecember 14, 2012 at 5:24 am #58045
Dear Mary Sue,
I don’t know the answer to your question, but
What wonderful news. Enjoy, as I’m sure you will.
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