Anyone still going on Zelboraf/Vemurafenib??

Nahmi.  I too am interested in the replies that you get.  I start Zelboraf in the next week.  I am stage 4 with brain mets.  No fun.  Good luck to you, and Dick  – thanks for your reply.  

Nahmi.  I too am interested in the replies that you get.  I start Zelboraf in the next week.  I am stage 4 with brain mets.  No fun.  Good luck to you, and Dick  – thanks for your reply.  

Nahmi.  I too am interested in the replies that you get.  I start Zelboraf in the next week.  I am stage 4 with brain mets.  No fun.  Good luck to you, and Dick  – thanks for your reply.  

Hi Nahmi,

My partner Craig has been on the BRAF trial since Jan of this year and scans 2 weeks ago continue to show improvement. He had a spot in one of his ribs and a small spot in his abdomen – they werent sure if it was a lymph node or just in some tissue, which both showed up in Dec of last year on PET scan. He had been NED for about 3 years since his initial stage 3 dx in Aug 2007. He had 5 days of radiation on the rib prior to starting the BRAF trial toward the end of last year. Latest scans cant detect the spot in his abdomen, and the rib spot seems pretty much dead, with the healing process continuing around the tumor tissue. The way I understand it is that the radio/braf has shrunk the rib tumor and he ended up with a 'pathological fracture' which takes a while to heal, so something still shows up on the scan.

We have been extremely lucky that he continues to have good response and just keep our fingers crossed at each scan. He also juices carrots and apples each day and has cut red meat from his diet. We monitor his vit D levels, and generally try to live as healthily as possible. I guess the next plan for him if/when the braf stops might be another trial – a friend of ours who recently had progression on Braf has started on the E7080 (sp) trial here in Perth, she also had the options of ipi and dcarbazine. So I imagine Craigs next options will be similar. I know there is a lady Tina whose hubby has been on it for a couple of years last I heard, and Prof Millward here has said there are a few ppl at the 3 and 4 year mark who are still responding.

All the best with everything – let me know if you have any more q's re side effects or anything 🙂

Lisa

Hi Nahmi,

My partner Craig has been on the BRAF trial since Jan of this year and scans 2 weeks ago continue to show improvement. He had a spot in one of his ribs and a small spot in his abdomen – they werent sure if it was a lymph node or just in some tissue, which both showed up in Dec of last year on PET scan. He had been NED for about 3 years since his initial stage 3 dx in Aug 2007. He had 5 days of radiation on the rib prior to starting the BRAF trial toward the end of last year. Latest scans cant detect the spot in his abdomen, and the rib spot seems pretty much dead, with the healing process continuing around the tumor tissue. The way I understand it is that the radio/braf has shrunk the rib tumor and he ended up with a 'pathological fracture' which takes a while to heal, so something still shows up on the scan.

We have been extremely lucky that he continues to have good response and just keep our fingers crossed at each scan. He also juices carrots and apples each day and has cut red meat from his diet. We monitor his vit D levels, and generally try to live as healthily as possible. I guess the next plan for him if/when the braf stops might be another trial – a friend of ours who recently had progression on Braf has started on the E7080 (sp) trial here in Perth, she also had the options of ipi and dcarbazine. So I imagine Craigs next options will be similar. I know there is a lady Tina whose hubby has been on it for a couple of years last I heard, and Prof Millward here has said there are a few ppl at the 3 and 4 year mark who are still responding.

All the best with everything – let me know if you have any more q's re side effects or anything 🙂

Lisa

Hi Nahmi,

My partner Craig has been on the BRAF trial since Jan of this year and scans 2 weeks ago continue to show improvement. He had a spot in one of his ribs and a small spot in his abdomen – they werent sure if it was a lymph node or just in some tissue, which both showed up in Dec of last year on PET scan. He had been NED for about 3 years since his initial stage 3 dx in Aug 2007. He had 5 days of radiation on the rib prior to starting the BRAF trial toward the end of last year. Latest scans cant detect the spot in his abdomen, and the rib spot seems pretty much dead, with the healing process continuing around the tumor tissue. The way I understand it is that the radio/braf has shrunk the rib tumor and he ended up with a 'pathological fracture' which takes a while to heal, so something still shows up on the scan.

We have been extremely lucky that he continues to have good response and just keep our fingers crossed at each scan. He also juices carrots and apples each day and has cut red meat from his diet. We monitor his vit D levels, and generally try to live as healthily as possible. I guess the next plan for him if/when the braf stops might be another trial – a friend of ours who recently had progression on Braf has started on the E7080 (sp) trial here in Perth, she also had the options of ipi and dcarbazine. So I imagine Craigs next options will be similar. I know there is a lady Tina whose hubby has been on it for a couple of years last I heard, and Prof Millward here has said there are a few ppl at the 3 and 4 year mark who are still responding.

All the best with everything – let me know if you have any more q's re side effects or anything 🙂

Lisa

I am also interested in knowing how everyone is doing. I am brand new to the Zelboraf treatment. Took it for 1 week, then had to be off for 2 weeks due to severe rash. Started back on at reduced dosage ( 3 in am, 3 in pm). Having some prickling sensation, and occasionally taking atarax for it, but nothing significant so far. Extreme photosensitiviy — as in: no longer than 2-3 minutes causing burns! I cover with sunscreen, clothing, hat and parasol when going out during sunlight hours. I appreciate the time people are taking to post on these threads, and am trying to learn how to folow them! Thanking God that so far I am doing well on the reduced dosage.

I am also interested in knowing how everyone is doing. I am brand new to the Zelboraf treatment. Took it for 1 week, then had to be off for 2 weeks due to severe rash. Started back on at reduced dosage ( 3 in am, 3 in pm). Having some prickling sensation, and occasionally taking atarax for it, but nothing significant so far. Extreme photosensitiviy — as in: no longer than 2-3 minutes causing burns! I cover with sunscreen, clothing, hat and parasol when going out during sunlight hours. I appreciate the time people are taking to post on these threads, and am trying to learn how to folow them! Thanking God that so far I am doing well on the reduced dosage.

I am also interested in knowing how everyone is doing. I am brand new to the Zelboraf treatment. Took it for 1 week, then had to be off for 2 weeks due to severe rash. Started back on at reduced dosage ( 3 in am, 3 in pm). Having some prickling sensation, and occasionally taking atarax for it, but nothing significant so far. Extreme photosensitiviy — as in: no longer than 2-3 minutes causing burns! I cover with sunscreen, clothing, hat and parasol when going out during sunlight hours. I appreciate the time people are taking to post on these threads, and am trying to learn how to folow them! Thanking God that so far I am doing well on the reduced dosage.