› Forums › General Melanoma Community › 6 month zelboraf update
- This topic has 18 replies, 4 voices, and was last updated 11 years, 6 months ago by kellygrl.
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- October 6, 2012 at 4:28 am
I got the call from my oncologists medical assistant today. Actual appt with the dr is next Wednesday. I’ve been om Zelboraf since April 8. A week earlier my radiation oncologist told us I wouldn’t last 2 summers without something like zelboraf. Thank God I have th BRAF mutation. I had an amazing response in th first 8 weeks, 90% of th mets in my lungs were either resolved or significantly smaller and the collapsed lobe on the left lung was reinflating. The next bi-monthly scan showed continued good response and today she said my scans were even further improved.I got the call from my oncologists medical assistant today. Actual appt with the dr is next Wednesday. I’ve been om Zelboraf since April 8. A week earlier my radiation oncologist told us I wouldn’t last 2 summers without something like zelboraf. Thank God I have th BRAF mutation. I had an amazing response in th first 8 weeks, 90% of th mets in my lungs were either resolved or significantly smaller and the collapsed lobe on the left lung was reinflating. The next bi-monthly scan showed continued good response and today she said my scans were even further improved. I,am feeling very very fortunate.
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- October 6, 2012 at 11:18 am
So very happy to read this post. I was given 6 to 8 months before I started Zelboraf and I am now past 2 1/2 years on it. I hope you continue to have good results on it. How have your side effects been?
Dick-
- October 6, 2012 at 4:51 pm
Thanks Dick – I watch your posts and hope for the same success you're having. when I read the standard "it quits working after 6 to 8 months" i remember how long you've benefited from the Zelboraf. My side effects are episodic. I have days when I'm moderately nauseous and just take promethazine for that, constant pain in the ball of my right foot that seems to get better when i use it more, i've got Celebrex for a bad shoulder and tylenol 3 when I need it, teeth are becoming more sensitive and I've lost a lot of hair. I've had a full beard since 1970 and it now looks much thinner, been pretty hairy all my adult life but no more. I seem to have a constant cold that borders on bronchitis with a mild cough i can't shake but have cough meds and Tessalon perles for that. I'm probably less sensitve to sunlight than most people on Zelboraf although i do burn much more quickly. We made a trip to Cairo and Kenya this summer to visit our son in the Peace Corps and I never had more than mild sunburn but I wear performance sun blocking shirts and use SPF 50 sunscreen. We were in the bush of Kenya and it never got out of control. all in all it's a good medication for me. I tried Interferon but only lasted 10 treatments of the first month but that was when I was stage 3. I went from stage 3 to 4 real fast with lots of mets in myh lungs and a collapsed lobe and I'd had a PET scan 5 months earlier that didn't show any hot spots so I consider myself very very lucky. I've also got prostate cancer that's micrometastatic but growing very slowly.
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- October 6, 2012 at 4:51 pm
Thanks Dick – I watch your posts and hope for the same success you're having. when I read the standard "it quits working after 6 to 8 months" i remember how long you've benefited from the Zelboraf. My side effects are episodic. I have days when I'm moderately nauseous and just take promethazine for that, constant pain in the ball of my right foot that seems to get better when i use it more, i've got Celebrex for a bad shoulder and tylenol 3 when I need it, teeth are becoming more sensitive and I've lost a lot of hair. I've had a full beard since 1970 and it now looks much thinner, been pretty hairy all my adult life but no more. I seem to have a constant cold that borders on bronchitis with a mild cough i can't shake but have cough meds and Tessalon perles for that. I'm probably less sensitve to sunlight than most people on Zelboraf although i do burn much more quickly. We made a trip to Cairo and Kenya this summer to visit our son in the Peace Corps and I never had more than mild sunburn but I wear performance sun blocking shirts and use SPF 50 sunscreen. We were in the bush of Kenya and it never got out of control. all in all it's a good medication for me. I tried Interferon but only lasted 10 treatments of the first month but that was when I was stage 3. I went from stage 3 to 4 real fast with lots of mets in myh lungs and a collapsed lobe and I'd had a PET scan 5 months earlier that didn't show any hot spots so I consider myself very very lucky. I've also got prostate cancer that's micrometastatic but growing very slowly.
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- October 6, 2012 at 4:51 pm
Thanks Dick – I watch your posts and hope for the same success you're having. when I read the standard "it quits working after 6 to 8 months" i remember how long you've benefited from the Zelboraf. My side effects are episodic. I have days when I'm moderately nauseous and just take promethazine for that, constant pain in the ball of my right foot that seems to get better when i use it more, i've got Celebrex for a bad shoulder and tylenol 3 when I need it, teeth are becoming more sensitive and I've lost a lot of hair. I've had a full beard since 1970 and it now looks much thinner, been pretty hairy all my adult life but no more. I seem to have a constant cold that borders on bronchitis with a mild cough i can't shake but have cough meds and Tessalon perles for that. I'm probably less sensitve to sunlight than most people on Zelboraf although i do burn much more quickly. We made a trip to Cairo and Kenya this summer to visit our son in the Peace Corps and I never had more than mild sunburn but I wear performance sun blocking shirts and use SPF 50 sunscreen. We were in the bush of Kenya and it never got out of control. all in all it's a good medication for me. I tried Interferon but only lasted 10 treatments of the first month but that was when I was stage 3. I went from stage 3 to 4 real fast with lots of mets in myh lungs and a collapsed lobe and I'd had a PET scan 5 months earlier that didn't show any hot spots so I consider myself very very lucky. I've also got prostate cancer that's micrometastatic but growing very slowly.
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- October 6, 2012 at 5:21 pm
I forgot to list skin tags and rash. I developed a bad rash at the end of my 2nd week. My oncologist had me cut back to 2 pills twice a day for a week then added 1 pill to mornings, that went well, then added 1 at night – for 3 pills twice a day. Then 1 more to mornings so 4 in the am and 3 in the pm and the side effects got worse so I cut back to 6 pills total per day. That’s worked well. -
- October 6, 2012 at 5:21 pm
I forgot to list skin tags and rash. I developed a bad rash at the end of my 2nd week. My oncologist had me cut back to 2 pills twice a day for a week then added 1 pill to mornings, that went well, then added 1 at night – for 3 pills twice a day. Then 1 more to mornings so 4 in the am and 3 in the pm and the side effects got worse so I cut back to 6 pills total per day. That’s worked well. -
- October 6, 2012 at 5:21 pm
I forgot to list skin tags and rash. I developed a bad rash at the end of my 2nd week. My oncologist had me cut back to 2 pills twice a day for a week then added 1 pill to mornings, that went well, then added 1 at night – for 3 pills twice a day. Then 1 more to mornings so 4 in the am and 3 in the pm and the side effects got worse so I cut back to 6 pills total per day. That’s worked well.
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- October 7, 2012 at 1:00 am
Like you I also know I have been blessed.This Wed,. will be the start of my 13 month on "Z".Just waiting to get the word on my next scans to be officially NED.Still a llittle fuzzy on my last scan results.As in earlier posts side effects vary over time.Not overly sensitive to sun like most users.The worst side effect is the bouts of diarrhea for 2 to 4 days every 2 weeks or so.Stil working full time .No real trouble with fatigue.Will keep you in my prayers for long continued success with "Z".Beat the Beast. Al
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- October 7, 2012 at 1:00 am
Like you I also know I have been blessed.This Wed,. will be the start of my 13 month on "Z".Just waiting to get the word on my next scans to be officially NED.Still a llittle fuzzy on my last scan results.As in earlier posts side effects vary over time.Not overly sensitive to sun like most users.The worst side effect is the bouts of diarrhea for 2 to 4 days every 2 weeks or so.Stil working full time .No real trouble with fatigue.Will keep you in my prayers for long continued success with "Z".Beat the Beast. Al
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- October 7, 2012 at 1:00 am
Like you I also know I have been blessed.This Wed,. will be the start of my 13 month on "Z".Just waiting to get the word on my next scans to be officially NED.Still a llittle fuzzy on my last scan results.As in earlier posts side effects vary over time.Not overly sensitive to sun like most users.The worst side effect is the bouts of diarrhea for 2 to 4 days every 2 weeks or so.Stil working full time .No real trouble with fatigue.Will keep you in my prayers for long continued success with "Z".Beat the Beast. Al
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- October 7, 2012 at 4:50 am
Outstanding Al. I’ve also been watching your success with Zelboraf. The larger the group of long term PFS the better. It gives people hope and hopefully results in quicker release of drugs like the MEK inhibitors in clinical trials now. I hate this disease and have vowed to do as much as I can to change the stats for me and all of us. Prayers for all of us -
- October 7, 2012 at 4:50 am
Outstanding Al. I’ve also been watching your success with Zelboraf. The larger the group of long term PFS the better. It gives people hope and hopefully results in quicker release of drugs like the MEK inhibitors in clinical trials now. I hate this disease and have vowed to do as much as I can to change the stats for me and all of us. Prayers for all of us -
- October 7, 2012 at 4:50 am
Outstanding Al. I’ve also been watching your success with Zelboraf. The larger the group of long term PFS the better. It gives people hope and hopefully results in quicker release of drugs like the MEK inhibitors in clinical trials now. I hate this disease and have vowed to do as much as I can to change the stats for me and all of us. Prayers for all of us
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