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December 12, 2012 at 5:20 am #20848odonoghue80Participant
Hi there, I’ve been following the site lately in anticipation of my latest scans. Unfortunately they were as bad as I could imagine. I went from slow growth and sub dermal nodules to basically having metasteses in every organ, liver, pancreas, bowel, and even 1 in the brain. (This happened in last 3 months after finishing 4 courses of ipi). Now I’m probably looking at radiation for the brain met and Zelboraf starting hopefully this week or early next. I’m pretty fearful of the Zelboraf but this brain met has me really nervous right now. Any success out there treating brain mets? I was hoping to go for TIL at NIH or MD Anderson but progressed so fast I’m not eligible with the brain met. Just looking for anybody that can push me in right direction or share similar experience.December 12, 2012 at 11:57 am #58022BrendanParticipant Hi,
This is my first post on the forum after reading it for about a year. I am sorry to hear about your recent scans. My experience isn’t the same as yours, but I did have a brain met.
Quick summary of my fight. I am stage IV. Braf neg. Met in lung in fall of 2011, surgery to remove, ipi (4 bags-Dec to Jan), clean until brain met in June 2012. Gamma knife in July 2012. Seizure as a result of gamma-decadron to control. Ipi again (4 bags) in Sep/Oct 2012. Met swelling and edema (as a result of gamma knife in July) led to a craniotomy in November to remove met. Craniotomy was not nearly as bad as it sounds and I am having more trouble dealing with the decadron than with the actual recovery from surgery-today is 5 week post-op visit.
40 year old male, married, two beautifully crazy daughters, 4 and 1.
I can tell you one thing my surgeon said to me two days prior to surgery that still makes me smile… “Hey, just think, after the surgery you won’t have a brain met!” (humor works for me). I had surgery on a Wednesday and was sent home on Saturday.
I assume that most of us (like me) would prefer to have ipi and the other treatments work on their own, but if it takes surgery to get a met out of my brain then I will take it. I always say that we are fighting cancer-it’s not supposed to be easy.
Good luck to you,
BrendanDecember 12, 2012 at 1:25 pm #58023jmmmParticipant
Hang in there. My husband did Yervoy in the summer of 2011. He did great, but 4 months after, he progressed very quickly (like you). Mets in lungs, bones, kidney and several other places, plus a huge one in his brain. He started Zelboraf October 2011. He had a craniotomy in November 2011, gamma knife in December 2011. He had some mixed results from Zelboraf originally, but his oncologist had him stay on it. By March 2012 all tumors were shrinking. In August 2012, he was declared NED and remains that way as of his last scan in late Novemeber:). He’s been dealing with some radiation induced necrosis, but other than that, and the side effects of Zelboraf (which are getting better), he feels fairly good. My best advice is to not give up! We don’t know how long the Zelboraf will work, nor do we know the next step, but we know with Melanoma, you never know what to expect. We take it one day at a time and hope that we’ll make the right choice when it’s necessary. Zelboraf is not always an end-of-life drug. My husband is 14 months and counting on it…it has saved his life and given our family (we have 3 boys, age 8, 10, and 12) more time than we expected when he progressed so quickly. It seems everyone on here fears Zelboraf, but for so many, it is a life saving/extending drug that can give more time.December 12, 2012 at 5:22 pm #58024marta010Participant Hi- my husband’s experience has been similar to the two other responses. He had one brain met treated by Gamma Knife in March. Started taking Zelboraf in April, had radiation treatment to lymph nodes in neck in July. At that time, he experienced edema related to the brain met/radiation necrosis and went on decadron to reduce the swelling. He had a craniotomy in Sept to remove the remains of the brain met. Surgery went well, recovery was fairly routine until he tapered off of the decadron. The edema again caused issues and he is now taking Avastin to treat the swelling. He did have some side effects early on from the Zelboraf – joint pain, sun sensitivity, etc., but they subsided after a couple of months. In my opinion, the steroid side effects were more difficult for him to deal with than the Zelboraf. The tumors in his neck area continue to shrink – if only his brain would cooperate! Hopefully, you will find your tumors shrinking quickly when you begin Zelboraf and your surgeon will successfully remove the brain met. Best of luck.
AnnDecember 12, 2012 at 5:55 pm #58025Johnfdc7Participant
Hi – in early November I began to experience neuro symptoms as a result of severe swelling in the brain. CT and MRI showed that I had developed 2 lesions in the front lobe. After much consideration of all the options (surgery wasnt an option), Oncologist started me on Dabrafenib (GSK BRAF inhibitor that has shown to be unexpectedly effective with brain mets in trials). At the moment this is working for me – in the first 9 days, both mets have shrunk to half their original size – fingers crossed that this progress continues. I have also had SRS on both mets and await scans in a few weeks to see how successful this has been. At the moment I am tapering off Dex – so far, so good. Feeling better every week as I reduce the Dex. No doubt the diagnosis of brain mets is a serious turn for the worse in any melanoma battle but I found the webinar on treatment of brain mets onthis website and the results they have had at Yale quiet encouraging.December 12, 2012 at 11:06 pm #58026Catherine PooleKeymaster Please be sure to look at our webinar on brain mets and radiation by a neurosurgeon from Yale. You can find it under the menu above in the pull down that says webinar. Many folks find this SRS or Gamma Knife radiaition not terribly harsh and it usually takes care of the met so you can continue treatment. Let us know how things are going for you. We are here to support you. BLUEJanuary 25, 2013 at 9:12 pm #58027KarenJParticipant I am new to this forum, so am just learning the lingo. My husband has lung, liver and brain mets. The brain met is on his motor control area, so could not be operated on. Gamma knife was not an option because it would cause swelling which would paralyze him. So he had whole brain radiation. He had his last treatment almost 2 weeks ago and is also off dex. I have been trying to find a trial with Dabrafenib that includes patients with brain mets. Do you know of any currently recruiting?
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