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November 29, 2012 at 7:59 pm #20812DanutaParticipant
This is the first time I’m writing in a forum and I put a lot of hope in this.
My mother was diagnoted with melanoma. It’s started on an ear. After surgeries, we found out that it had spread in the brain. That day, one of her brain metastasis blead and she became Hemiplegic for a while. But thanks to different medicines and her tenacity, she recoverd from that.
A few weeks after her brain bleeding, we discovered other metastasis, principally in the lungs. At that time, she was put on Zelboraf, it was 5 months ago. The effects were amazing: all of her thorax metastasis disapeared, only the brain metastasis stayed.
Today, she annouced me that Zelboraf has no longer effect on her cancer: Metastasis re-developed in her lungs, brain and spine.
Her oncologist tolled her that radiotherapy is going to be done on her brain tomorrow morning to try to remove her brain metastasis, but that nothing else can be done, that she cannot participate to any trials…
Is that true? Is there nothing else we can do?
She’s a fighter and she’s hopeful, I hope other tools than radiotherapy can help her going through this!
Do you know any trials we could get in? Who can I contact for that?
I’m a bit lost in this forum, sorry if this kind of subject has already been discussed…
Thanks in advance for your answerNovember 29, 2012 at 9:32 pm #57854crburton28Participant
After 14 months on Zelboraf, my husband was diagnosed with brain mets last week. His onc told him that if radiation and gamma knife don’t work there are still trials he is eligible for. He was also done Il-2 and IPI. The only trial he wouldn’t be eligible for is the GSK brag drug.
I wouldn’t take no for an answer. Do some research on your own and present your doctor with your findings. That’s what I did.
Don’t give up!
CarlaNovember 29, 2012 at 11:29 pm #57855Catherine PooleKeymaster
Welcome Carla. It is true, there are some trials for folks with brain mets, but very few. It is best to clear up the mets with radiation therapy and then go into a trial. If gamma knife can be used that would be optimal. What part of the country are you from? I think the BRAF by GSK is what was bring mentioned. Go to http://www.clinicaltrials.govfor further research. Let us know what you find.January 11, 2013 at 1:17 pm #57856DanutaParticipant Dear Catherine and Carla,
After many researchs and discussions with her oncologist, my mom had to go through radiotherapy before starting chemio then only Ipi or any medication still on trial. Unfortunately, after a week of radiotherapy, she had a brain hemorragy in two different places. She passed away 10 days after that.
These last weeks have been very distressing, that’s why I didn’t give you any feed-back.
I wanted to thank you for your replies, it helped us a lot to keep us hopeful at that time.
Best Regards, and a lot of courage to everyone that has to go through all of this.January 11, 2013 at 4:58 pm #57857GillyParticipant
Very sorry for your loss Danuta – your mother is no longer suffering – I hope you have support in your sadness .
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