One patient with glioblastoma still alive nine years later
by Oncrx on Fri Jun 08, 2012 05:59 PM
no, you will need the BRAF mutation for this new drug to work. Not indicated for wild type.
by fxrchopper2003 on Sat Jun 09, 2012 04:14 AM
Is there any treatment options for the wild type mutation?
by mom21bmom23 on Fri Jun 22, 2012 12:24 AM
Hope all is going well! My husband was diagnosed Melanoma brain mets in December 2011, we started with 1 tumor that they were able to remove and 3 tumors that were inoperable. He opted for WBR with 20 rounds and 5 pinpoint rounds that took place in Feb. MRI and PET scans were done again in April showed 3 news ones the others had grown, a new spot on his lung and another spot on that back side of his stomach and they gave him his 6mths to live. Can you say, overwelmed? He opted to try some alternative options since they gave us our death sentence and us thinking we were out of choices. Now he had another MRI this week and we found out today they are growing still. They have given us the option of the Zelboraf but we were orignally told it would not cross the blood brain barrier, but after reading these posts it appears it does? I'm confused! Can you give me a little insight? I know you can't tell me to do it but I'm wondering if we should now. Any advice would be helpful! I'm praying for you! Thank you for your time.
by Retired05 on Fri Jun 22, 2012 09:45 PM
Zelboraf will cross the blood brain barrier and thank God it does. It's for the BRAF mutation which is diagnosed by a brain biopsy. They should have pathology from your husbands previous surgery. WBR didn't work for my son in law either. He started with 14 tumors and after 18 rounds they didn't budge and more grew. He's lucky that all other scans are negative for disease and he's only dealing with the brain. Tomorrow will be day 21 of the Zelboraf and he's feeling fantastic! His white blood count is down a bit from last week and his oncologist is very happy with his progress. He was told his situation is very treatable with a low morbidity rate. So. . . .we stay hopeful and positive. I am sorry for the diagnosis your husband was given. I will pray for you both. I certainly would take a chance with the Zelboraf as I have read many stories of remission. Bless you both and let me know what you decide.
by mom21bmom23 on Sat Jun 23, 2012 11:52 PM
Thank you so much for your response! It made me feel so much better knowing someone out there has a positive story. My husband started taking the Zelboraf last night! So far so good. We are still a little scared about it but one day at a time right? Your advice is priceless, thank you so much for taking the time to reply. I will keep you posted on our outcome as I hope you will do the same. Would love to compare notes and please know that I too will pray for you, your son-in-law and your family.
by Retired05 on Wed Jul 18, 2012 10:08 PM
Christine, my son in law had his MRI Monday. . .results today are AWESOME. Significant reduction in the disease ALL his tumors are shrinking. You guys hang in there and your good news will come !!!!
by mom21bmom23 on Thu Jul 19, 2012 01:07 AM
NINA!!! I'm so so so happy for you guys!! OH MY OH MY, I am so inspired and hopeful. GOD is GOOD!! Glenn is a little out of sorts right now cause of the allergic reaction he had with the Zelboraf, they still have not put him back on it. We meet with his oncologist on Friday. I will keep you posted.
by cbeynon on Wed Oct 10, 2012 05:44 AM
My son (37yrs old) was diagnoised with melanoma stage 4 in February. It has spread through out his body except the brain and heart. He has been put on a medication called Zelbraf? I might be spelling it wrong but it is for ones who shows positive for the barf. which they find in the tumors. My sons specialist have told us that it will shrink the tumors but only for about 9 monoths because your body becomes immune. Is there anyone else on this med? The doctors told him that this is his only choice but recently have made an apointment with Moffit medical center in Tampa just to check. He has some reactions as sun burn easily ( 2nd degree) He is on very strong pain meds (morphine) and under hospice for meds only. Not able to work and sleeps a lot. I am just so worried not just because he is my child but he has three teen agers and he is very worried about finances. ..
by lsv12 on Thu Oct 11, 2012 12:49 AM
My husband has been on the Zelboraf /PK drug since the beginning of January at Moffitt. He is stage 4 metastic melanoma with tumors on his salivary gland, left lower lobe, small spot on kidney & liver also on right tibia. He has to take Zometa to keep his bones strong once a month. He has not had any side effects, just a little more tired than usual. He has also had scans done after 8 months being on it and all tumors have schrinked more than half their size. All of his scans have been the same. Has he tested positve for the BRAF? If so he could do this clinical trial, the PK in addition to the Zelboraf helps to elimate side effects. We have been lucky enough we both have very good insurance so the out of pocket is that bad. Our big expense is the gas and hotel for the trip over to Tampa. We live 3 hours away.
I wish you luck, stay positive. Moffitt will put you in the right direction.
Stay in touch
by Retired05 on Fri Oct 12, 2012 09:54 PM
My son in law has been on Zelboraf since June 2012. On March 22 he was diagnosed with stage IV melanoma. . .14 brain lesions. As of his last MRI which was a month ago he now has but 6 measureable lesions. He's feeling fabulous, few side effects. His oncologist told him his cancer is very treatable with a low morbiity rate. We're blessed. . .he's feeling and looking great. We continue to pray for his remission. Please consider taking the Z.
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