› Forums › General Melanoma Community › delay Zelboraf treatment?
- This topic has 21 replies, 6 voices, and was last updated 11 years, 11 months ago by
deardad.
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- May 15, 2012 at 5:16 pm
My dad (stage 4) was supposed to start zelboraf yesterday, but at the appt. Dr. recommended they delay starting treatment until disease begins to progress again. (He was on Yervoy last fall and saw reduction in size of mets). Has anyone heard of delaying? Supposedly Dr. told Dad that if Zelboraf doesn't/stops working there won't be much left to try, so better to wait and extend his life later. This doesn't really make sense to me so I am looking for others with this experience, or maybe I should be trying to get Dad to get another opinion?My dad (stage 4) was supposed to start zelboraf yesterday, but at the appt. Dr. recommended they delay starting treatment until disease begins to progress again. (He was on Yervoy last fall and saw reduction in size of mets). Has anyone heard of delaying? Supposedly Dr. told Dad that if Zelboraf doesn't/stops working there won't be much left to try, so better to wait and extend his life later. This doesn't really make sense to me so I am looking for others with this experience, or maybe I should be trying to get Dad to get another opinion?
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- May 15, 2012 at 9:54 pm
When I was placed on ipi back in fall it was with hopes of hitting a grand slam It is such a new drug the drs still are not sure. I was told 50% of melanoma people are BRAF positive. And of those BRAF positive if provided with Zelboraf most will respond to some degree but Zelboraf is taken in pill form for as long as it works . The average is six months. Most agree it will at some point stop working but with IPI it could be lifetime reaction. So if yor dad is reacting positively to Yervoy why kick in another drug if not needed right now. I am grateful to have both Yervoy and Zelboraf as options right now. But 8 big pills a day are standard for Zelboraf and I have been swallowing them for nearly 8 months now I will get a body scan and brain MRI in mid June and we will see how things are looking. This is my opinion only. Congratulations on ipi working it is one best results you wish for.
Kathy D -
- May 15, 2012 at 9:54 pm
When I was placed on ipi back in fall it was with hopes of hitting a grand slam It is such a new drug the drs still are not sure. I was told 50% of melanoma people are BRAF positive. And of those BRAF positive if provided with Zelboraf most will respond to some degree but Zelboraf is taken in pill form for as long as it works . The average is six months. Most agree it will at some point stop working but with IPI it could be lifetime reaction. So if yor dad is reacting positively to Yervoy why kick in another drug if not needed right now. I am grateful to have both Yervoy and Zelboraf as options right now. But 8 big pills a day are standard for Zelboraf and I have been swallowing them for nearly 8 months now I will get a body scan and brain MRI in mid June and we will see how things are looking. This is my opinion only. Congratulations on ipi working it is one best results you wish for.
Kathy D -
- May 15, 2012 at 9:54 pm
When I was placed on ipi back in fall it was with hopes of hitting a grand slam It is such a new drug the drs still are not sure. I was told 50% of melanoma people are BRAF positive. And of those BRAF positive if provided with Zelboraf most will respond to some degree but Zelboraf is taken in pill form for as long as it works . The average is six months. Most agree it will at some point stop working but with IPI it could be lifetime reaction. So if yor dad is reacting positively to Yervoy why kick in another drug if not needed right now. I am grateful to have both Yervoy and Zelboraf as options right now. But 8 big pills a day are standard for Zelboraf and I have been swallowing them for nearly 8 months now I will get a body scan and brain MRI in mid June and we will see how things are looking. This is my opinion only. Congratulations on ipi working it is one best results you wish for.
Kathy D-
- May 15, 2012 at 11:15 pm
I agree with Kathy, my dad was on Zelboraf for 7 months and it stopped working. He was never offered IPI or any form of immunotherapy. At the time his mets were very small, now they are in his brain and the other lesions growing. We are kind of at the end of the road unless we get these brain mets under control. I wouldn't touch Zelboraf until you have too, your oncologist is right I believe.
Take care
Nahmi
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- May 16, 2012 at 3:17 am
I am in the same boat. They are delaying the Zelboraf until I really need it. I heard after the Zelboraf stops working your tumors really grow fast and you die. It really is the last bullet. I was on Yervoy, but it stopped working. I just had a big tumor taken out of my back that was sticking out. Good Luck. Maybe they will find another treatment soon.
Terri Kelly
Stage 4
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- May 16, 2012 at 3:17 am
I am in the same boat. They are delaying the Zelboraf until I really need it. I heard after the Zelboraf stops working your tumors really grow fast and you die. It really is the last bullet. I was on Yervoy, but it stopped working. I just had a big tumor taken out of my back that was sticking out. Good Luck. Maybe they will find another treatment soon.
Terri Kelly
Stage 4
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- May 16, 2012 at 3:17 am
I am in the same boat. They are delaying the Zelboraf until I really need it. I heard after the Zelboraf stops working your tumors really grow fast and you die. It really is the last bullet. I was on Yervoy, but it stopped working. I just had a big tumor taken out of my back that was sticking out. Good Luck. Maybe they will find another treatment soon.
Terri Kelly
Stage 4
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- May 15, 2012 at 11:15 pm
I agree with Kathy, my dad was on Zelboraf for 7 months and it stopped working. He was never offered IPI or any form of immunotherapy. At the time his mets were very small, now they are in his brain and the other lesions growing. We are kind of at the end of the road unless we get these brain mets under control. I wouldn't touch Zelboraf until you have too, your oncologist is right I believe.
Take care
Nahmi
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- May 15, 2012 at 11:15 pm
I agree with Kathy, my dad was on Zelboraf for 7 months and it stopped working. He was never offered IPI or any form of immunotherapy. At the time his mets were very small, now they are in his brain and the other lesions growing. We are kind of at the end of the road unless we get these brain mets under control. I wouldn't touch Zelboraf until you have too, your oncologist is right I believe.
Take care
Nahmi
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- May 16, 2012 at 3:31 am
Totally agree with oncologist and other replies. My mom was offered ipi or Zelboraf at one of her appointments. Mets were increasing in size and number. Her oncologist said there was no right or wrong answer but was concerned about a very large mets beside her heart. He recommended Zelboraf first to decrease the tumor burden, then ipi when Zelboraf stopped working. It stopped working approximately 5 months later. By the time they did her scan, mets had reached brain. After brain surgery, she became so weak and debilitated she couldn't start the ipi, plus the fact she was on steroids from the swelling on the brain. She was disqualified from the clinical trial due to brain mets. We were grateful for the 5 months that Zelboraf worked and mom had a good quality of life, but looking back, I will always wonder if we should have tried the ipi first. If your dad is having a good quality of life now, I would wait to start the Zelboraf. It does work rather quickly in most people, so even if the mets do increase in size, he should start to feel a difference in a couple weeks, assuming he is BRAF positive.
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- May 16, 2012 at 3:31 am
Totally agree with oncologist and other replies. My mom was offered ipi or Zelboraf at one of her appointments. Mets were increasing in size and number. Her oncologist said there was no right or wrong answer but was concerned about a very large mets beside her heart. He recommended Zelboraf first to decrease the tumor burden, then ipi when Zelboraf stopped working. It stopped working approximately 5 months later. By the time they did her scan, mets had reached brain. After brain surgery, she became so weak and debilitated she couldn't start the ipi, plus the fact she was on steroids from the swelling on the brain. She was disqualified from the clinical trial due to brain mets. We were grateful for the 5 months that Zelboraf worked and mom had a good quality of life, but looking back, I will always wonder if we should have tried the ipi first. If your dad is having a good quality of life now, I would wait to start the Zelboraf. It does work rather quickly in most people, so even if the mets do increase in size, he should start to feel a difference in a couple weeks, assuming he is BRAF positive.
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- May 16, 2012 at 3:31 am
Totally agree with oncologist and other replies. My mom was offered ipi or Zelboraf at one of her appointments. Mets were increasing in size and number. Her oncologist said there was no right or wrong answer but was concerned about a very large mets beside her heart. He recommended Zelboraf first to decrease the tumor burden, then ipi when Zelboraf stopped working. It stopped working approximately 5 months later. By the time they did her scan, mets had reached brain. After brain surgery, she became so weak and debilitated she couldn't start the ipi, plus the fact she was on steroids from the swelling on the brain. She was disqualified from the clinical trial due to brain mets. We were grateful for the 5 months that Zelboraf worked and mom had a good quality of life, but looking back, I will always wonder if we should have tried the ipi first. If your dad is having a good quality of life now, I would wait to start the Zelboraf. It does work rather quickly in most people, so even if the mets do increase in size, he should start to feel a difference in a couple weeks, assuming he is BRAF positive.
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- May 16, 2012 at 12:11 pm
Zelboraf was our first response after recurrence… but we put it off until I had scans confirming lesions. I had a lung lesion that wasn't acting like cancer, but we had it out anyway, and it proved to be mel.. so we waited until next scans, which showed a couple spots, so we decided to start zelboraf.
I don't know where the whole "If zelboraf doesn't work, your tumors get big and you die" came from, but our plan is if I get resistant to this switch to Yervoy, and there seems to be some other things we can try still after that, and hopefully we've pushed time back enough that one of the current trials has progressed far enough either to join or maybe there will be new treatment.
In any event, seems reasonable to me to wait and see how far yervoy pushed back the beast before starting Zelboraf.
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- May 16, 2012 at 12:11 pm
Zelboraf was our first response after recurrence… but we put it off until I had scans confirming lesions. I had a lung lesion that wasn't acting like cancer, but we had it out anyway, and it proved to be mel.. so we waited until next scans, which showed a couple spots, so we decided to start zelboraf.
I don't know where the whole "If zelboraf doesn't work, your tumors get big and you die" came from, but our plan is if I get resistant to this switch to Yervoy, and there seems to be some other things we can try still after that, and hopefully we've pushed time back enough that one of the current trials has progressed far enough either to join or maybe there will be new treatment.
In any event, seems reasonable to me to wait and see how far yervoy pushed back the beast before starting Zelboraf.
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- May 21, 2012 at 7:51 am
Yeah I think the problem with Zelboraf from our experience is that once you progress it spreads quickly and I'm hearing too many reports about users ending up with brain mets like my dad. Something I've never understood is that at the 5 month mark scans are moved from monthly to 3 monthly…right on the average time that this drug stops working. Sure enough within that 3 months (not sure when) the drug had stopped and my dad is now in this boat looking at WBR. Nothing else has been offered except Temador which doesn't seem to be changing the size of visible body mets. I dont' want be discouraging but I would insist on the monthly scans and be ready to switch to the next treatment.
I would also be looking at the new drug Dabrafenib with a MEK inhibitor it sounds very promising, just not sure if prior BRAF users are eligibe?
Nahmi
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- May 21, 2012 at 7:51 am
Yeah I think the problem with Zelboraf from our experience is that once you progress it spreads quickly and I'm hearing too many reports about users ending up with brain mets like my dad. Something I've never understood is that at the 5 month mark scans are moved from monthly to 3 monthly…right on the average time that this drug stops working. Sure enough within that 3 months (not sure when) the drug had stopped and my dad is now in this boat looking at WBR. Nothing else has been offered except Temador which doesn't seem to be changing the size of visible body mets. I dont' want be discouraging but I would insist on the monthly scans and be ready to switch to the next treatment.
I would also be looking at the new drug Dabrafenib with a MEK inhibitor it sounds very promising, just not sure if prior BRAF users are eligibe?
Nahmi
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- May 21, 2012 at 7:51 am
Yeah I think the problem with Zelboraf from our experience is that once you progress it spreads quickly and I'm hearing too many reports about users ending up with brain mets like my dad. Something I've never understood is that at the 5 month mark scans are moved from monthly to 3 monthly…right on the average time that this drug stops working. Sure enough within that 3 months (not sure when) the drug had stopped and my dad is now in this boat looking at WBR. Nothing else has been offered except Temador which doesn't seem to be changing the size of visible body mets. I dont' want be discouraging but I would insist on the monthly scans and be ready to switch to the next treatment.
I would also be looking at the new drug Dabrafenib with a MEK inhibitor it sounds very promising, just not sure if prior BRAF users are eligibe?
Nahmi
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- May 16, 2012 at 12:11 pm
Zelboraf was our first response after recurrence… but we put it off until I had scans confirming lesions. I had a lung lesion that wasn't acting like cancer, but we had it out anyway, and it proved to be mel.. so we waited until next scans, which showed a couple spots, so we decided to start zelboraf.
I don't know where the whole "If zelboraf doesn't work, your tumors get big and you die" came from, but our plan is if I get resistant to this switch to Yervoy, and there seems to be some other things we can try still after that, and hopefully we've pushed time back enough that one of the current trials has progressed far enough either to join or maybe there will be new treatment.
In any event, seems reasonable to me to wait and see how far yervoy pushed back the beast before starting Zelboraf.
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- May 16, 2012 at 3:14 pm
Thank you everyone for your insight and support. I am feeling much better about the decision now and hopeful that this is really good news (yes, we have already been blessed that the Yervoy worked and that Dad is BRAF+). Praying for you and your loved ones!
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- May 16, 2012 at 3:14 pm
Thank you everyone for your insight and support. I am feeling much better about the decision now and hopeful that this is really good news (yes, we have already been blessed that the Yervoy worked and that Dad is BRAF+). Praying for you and your loved ones!
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- May 16, 2012 at 3:14 pm
Thank you everyone for your insight and support. I am feeling much better about the decision now and hopeful that this is really good news (yes, we have already been blessed that the Yervoy worked and that Dad is BRAF+). Praying for you and your loved ones!
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