@peters
Forum Replies Created
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- August 1, 2011 at 9:59 am
Hi,
I hope you can get on a BRAF inhibitor trial or expanded access. There is an issue with resistance and side-effects. Ideally you would want to get a combined BRAFi+MEKi trial which seems to help overcoming some of the resistance, but has less of the nasty side effects that BRAFi might have.
Still, BRAFi by itself seems on paper a good option as after resistance there may be a benefit in moving onto MEKi. Ask your oncologist if you can get vemurafenib on expanded access.
I myself (stage 4 diagnosed in March 11) was 'fortunate' (everything is relative) to be able to get onto the phase 3 MEK inhibitor trial from GSK. There is no point in moving onto BRAFi.
I guess the reason why your oncologist wants to wait for the results and get you onto targeted therapy is to reduce tumour growth (I had 50 to 75% reduction in 6 weeks) which would buy time. Yervoy takes time to kick in and as with any of those drugs, it may not work, something you don't find out until one or two months later.
Boots, keep going and don't give up.
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- August 1, 2011 at 9:59 am
Hi,
I hope you can get on a BRAF inhibitor trial or expanded access. There is an issue with resistance and side-effects. Ideally you would want to get a combined BRAFi+MEKi trial which seems to help overcoming some of the resistance, but has less of the nasty side effects that BRAFi might have.
Still, BRAFi by itself seems on paper a good option as after resistance there may be a benefit in moving onto MEKi. Ask your oncologist if you can get vemurafenib on expanded access.
I myself (stage 4 diagnosed in March 11) was 'fortunate' (everything is relative) to be able to get onto the phase 3 MEK inhibitor trial from GSK. There is no point in moving onto BRAFi.
I guess the reason why your oncologist wants to wait for the results and get you onto targeted therapy is to reduce tumour growth (I had 50 to 75% reduction in 6 weeks) which would buy time. Yervoy takes time to kick in and as with any of those drugs, it may not work, something you don't find out until one or two months later.
Boots, keep going and don't give up.
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- November 27, 2011 at 5:26 pm
The problem is that there won't be many cases where this has been tried (just because of the study protocols, liability etc.)
For those in the EU, if you responded previously to a BRAF inhibitor (from Roche/GSK/…) and stopped responding a while ago, it may be worth asking your oncologist to get in touch with Roche to see if you can be enrolled in the Vemurafenib expanded access programme (BRIM4).
It is only when patients try it that other cases can be found. From a patient point of view, if you have no other treatment lined up, you have nothing to lose. One knows pretty quicky if there is a response again or not (if you have skin lesions).
Please reply to the thread if you managed to get on BRIM4 and respond again.
Thank you,
Peter (Stage 4, lung, skin and brain mets and just became Vemurafenib resistant)
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- November 27, 2011 at 5:26 pm
The problem is that there won't be many cases where this has been tried (just because of the study protocols, liability etc.)
For those in the EU, if you responded previously to a BRAF inhibitor (from Roche/GSK/…) and stopped responding a while ago, it may be worth asking your oncologist to get in touch with Roche to see if you can be enrolled in the Vemurafenib expanded access programme (BRIM4).
It is only when patients try it that other cases can be found. From a patient point of view, if you have no other treatment lined up, you have nothing to lose. One knows pretty quicky if there is a response again or not (if you have skin lesions).
Please reply to the thread if you managed to get on BRIM4 and respond again.
Thank you,
Peter (Stage 4, lung, skin and brain mets and just became Vemurafenib resistant)
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- November 27, 2011 at 5:26 pm
The problem is that there won't be many cases where this has been tried (just because of the study protocols, liability etc.)
For those in the EU, if you responded previously to a BRAF inhibitor (from Roche/GSK/…) and stopped responding a while ago, it may be worth asking your oncologist to get in touch with Roche to see if you can be enrolled in the Vemurafenib expanded access programme (BRIM4).
It is only when patients try it that other cases can be found. From a patient point of view, if you have no other treatment lined up, you have nothing to lose. One knows pretty quicky if there is a response again or not (if you have skin lesions).
Please reply to the thread if you managed to get on BRIM4 and respond again.
Thank you,
Peter (Stage 4, lung, skin and brain mets and just became Vemurafenib resistant)
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- June 22, 2011 at 9:36 pm
Hi Frank,
I have been thinking the same with regards to why waiting. It is true that they work pretty quickly, IF there is response. Here are a few factors to think about. First of all, which inhibitor are you going to give (BRAF or MEK). There are different side effects of taking each of these. Given the probability of the tumor being BRAF positive (on average 0.5, but higher for young people) and response rates, the probability of responding is 0.2 to 0.3 (assuming no test was done). Response is higher for BRAF inhibitors than MEK inhibitors. They are not readily available yet, and when they are it will no doubt be cheap. Just randomly placing somebody on a drug will possibly exclude them from certain trials.
Hopefully in the near future, these targeted drugs will become the new standard and side effects are well understood and managed. Maybe by then, the test for BRAF status may be a lot quicker.
I also hope that something similar can be found for folk testing BRAF negative to quickly help them reduce tumours.
Ipi is a hope for all of us to then keep things stable afterwards.
Peter, Stage IV
on GSK1120212 (after waiting a few weeks for the BRAF tests while tumours were aggressively growing)
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- June 22, 2011 at 9:36 pm
Hi Frank,
I have been thinking the same with regards to why waiting. It is true that they work pretty quickly, IF there is response. Here are a few factors to think about. First of all, which inhibitor are you going to give (BRAF or MEK). There are different side effects of taking each of these. Given the probability of the tumor being BRAF positive (on average 0.5, but higher for young people) and response rates, the probability of responding is 0.2 to 0.3 (assuming no test was done). Response is higher for BRAF inhibitors than MEK inhibitors. They are not readily available yet, and when they are it will no doubt be cheap. Just randomly placing somebody on a drug will possibly exclude them from certain trials.
Hopefully in the near future, these targeted drugs will become the new standard and side effects are well understood and managed. Maybe by then, the test for BRAF status may be a lot quicker.
I also hope that something similar can be found for folk testing BRAF negative to quickly help them reduce tumours.
Ipi is a hope for all of us to then keep things stable afterwards.
Peter, Stage IV
on GSK1120212 (after waiting a few weeks for the BRAF tests while tumours were aggressively growing)
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- June 22, 2011 at 9:26 am
Hi,
I am fortunate that my rash is mild (nothing like Jonah's post on http://www.groinstrong.com
The whole time of the course I am prescribed Doxycycline (2x100mg). Recently I got Pyridoxine (vit B6) (3x50mg).
Every day I put on Diprobase all over the body (sometimes twice a day for the parts with rash).
The hydrocortisone 1% cream didn't have much effect on me. Now trying Clindamycin although such a small stick for that much surface is time consuming.
About 3 weeks ago I had a rash on my scalp and got Elocon. That stuff did wonders and cleared up the problem in a few days. It dries out the skin, so I had to put Diprobase on the days I was treating it with Elocon. Now that the problem is resolved, I now use Oilatum scalp shampoo and haven't had issues since.
After working in the garden, I had cracked skin on two fingers which had bled. Even though it was healing, the protocol seems to stipulate that I had to be taken off the drug for a week. It was also unfortunate that I had two mouth ulcers which I was successfully treating with Bonjela. It was unfortunate but they have to stick to the rules. I now cream up my hands with Neutrogena cream almost every time after I wash them, and twice a day I use Corsodyl mouth wash. The bottom of my feet and heels tend to get dry so I treat it with Scholl Cracked Heel Repair Cream if it starts to get worse, or otherwise with the regular Diprobase.
Just to complete the list, I also use the Oilatum shower gel on my face especially as it is easier to make sure my ears are all greased up.
Peter
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- June 22, 2011 at 9:26 am
Hi,
I am fortunate that my rash is mild (nothing like Jonah's post on http://www.groinstrong.com
The whole time of the course I am prescribed Doxycycline (2x100mg). Recently I got Pyridoxine (vit B6) (3x50mg).
Every day I put on Diprobase all over the body (sometimes twice a day for the parts with rash).
The hydrocortisone 1% cream didn't have much effect on me. Now trying Clindamycin although such a small stick for that much surface is time consuming.
About 3 weeks ago I had a rash on my scalp and got Elocon. That stuff did wonders and cleared up the problem in a few days. It dries out the skin, so I had to put Diprobase on the days I was treating it with Elocon. Now that the problem is resolved, I now use Oilatum scalp shampoo and haven't had issues since.
After working in the garden, I had cracked skin on two fingers which had bled. Even though it was healing, the protocol seems to stipulate that I had to be taken off the drug for a week. It was also unfortunate that I had two mouth ulcers which I was successfully treating with Bonjela. It was unfortunate but they have to stick to the rules. I now cream up my hands with Neutrogena cream almost every time after I wash them, and twice a day I use Corsodyl mouth wash. The bottom of my feet and heels tend to get dry so I treat it with Scholl Cracked Heel Repair Cream if it starts to get worse, or otherwise with the regular Diprobase.
Just to complete the list, I also use the Oilatum shower gel on my face especially as it is easier to make sure my ears are all greased up.
Peter
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