› Forums › General Melanoma Community › finally some answers-stage 4
- This topic has 33 replies, 7 voices, and was last updated 11 years, 7 months ago by
King.
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- October 8, 2012 at 10:51 pm
Well we have been waiting since the doctrors found bone lesioons on Aug 23rd to get confirmation that is was melanoma. After several bone biopsies done that came back inconclusive, we had a new area of concern on the left breast. That procedure wasnt done as fast as we would have liked because of some issues with that biopsy. We finally got the results today. The breast biopsy is positive for melanoma. I am officially stage 4 now. The last few months have been hard dealing with the frustration of not knowing and dealing with the pain from the bone lesions.Well we have been waiting since the doctrors found bone lesioons on Aug 23rd to get confirmation that is was melanoma. After several bone biopsies done that came back inconclusive, we had a new area of concern on the left breast. That procedure wasnt done as fast as we would have liked because of some issues with that biopsy. We finally got the results today. The breast biopsy is positive for melanoma. I am officially stage 4 now. The last few months have been hard dealing with the frustration of not knowing and dealing with the pain from the bone lesions. I am actually glad to have an answer but now I am a little scared about the future. I have two young children and a wonderful husband and immediate family. We will be discussing and hopefully starting treatments on Wednesday. Wish us luck on this next part of our journey as we fight this best. I am B RAF + so we are looking at Z or a trial. Any suggestions or input on the drug?
Kelly
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- October 9, 2012 at 12:05 am
KELLY,
Hang in there.. you are BRAF + and that is a good thing ! I too am BRAF + and had Stage IV melanoma and my scans show almost no cancer left. I am on the GSK (Glaxo Smith Kline) BRAF/MEK drug trial. I take 5 pills a day. PLEASE do some research on clinical trials.gov and other websites or put out an all call to others to find out where there is a trial taking place. What area do you live in ? Tell your doctor of the drug trial. There are now other companies doing this trial al so. Just look for BRAF/MEK combination. PLEASE this drug combination saved mine and many others lives !!!!
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- October 9, 2012 at 12:05 am
KELLY,
Hang in there.. you are BRAF + and that is a good thing ! I too am BRAF + and had Stage IV melanoma and my scans show almost no cancer left. I am on the GSK (Glaxo Smith Kline) BRAF/MEK drug trial. I take 5 pills a day. PLEASE do some research on clinical trials.gov and other websites or put out an all call to others to find out where there is a trial taking place. What area do you live in ? Tell your doctor of the drug trial. There are now other companies doing this trial al so. Just look for BRAF/MEK combination. PLEASE this drug combination saved mine and many others lives !!!!
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- October 9, 2012 at 12:05 am
KELLY,
Hang in there.. you are BRAF + and that is a good thing ! I too am BRAF + and had Stage IV melanoma and my scans show almost no cancer left. I am on the GSK (Glaxo Smith Kline) BRAF/MEK drug trial. I take 5 pills a day. PLEASE do some research on clinical trials.gov and other websites or put out an all call to others to find out where there is a trial taking place. What area do you live in ? Tell your doctor of the drug trial. There are now other companies doing this trial al so. Just look for BRAF/MEK combination. PLEASE this drug combination saved mine and many others lives !!!!
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- October 9, 2012 at 12:19 am
Sorry you joined this group.My opinion is if possible try to see if there are any trials with the combo of yervoy & zelboraf.If not i would go with yervoy first and use zelboraf as a safety net in the future.Prayers sent your way.Beat the Beast. Al
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- October 9, 2012 at 12:19 am
Sorry you joined this group.My opinion is if possible try to see if there are any trials with the combo of yervoy & zelboraf.If not i would go with yervoy first and use zelboraf as a safety net in the future.Prayers sent your way.Beat the Beast. Al
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- October 9, 2012 at 12:19 am
Sorry you joined this group.My opinion is if possible try to see if there are any trials with the combo of yervoy & zelboraf.If not i would go with yervoy first and use zelboraf as a safety net in the future.Prayers sent your way.Beat the Beast. Al
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- October 9, 2012 at 12:24 am
If it was me, I would definitely ask about this which is supposed to start ASAP.http://www.clinicaltrials.gov/ct2/show/NCT01621490
Zelboraf will be there, and remember it only works 50% of the time, often failing by month 7.
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- October 9, 2012 at 12:24 am
If it was me, I would definitely ask about this which is supposed to start ASAP.http://www.clinicaltrials.gov/ct2/show/NCT01621490
Zelboraf will be there, and remember it only works 50% of the time, often failing by month 7.
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- October 9, 2012 at 1:05 am
Kely,
I agree with awillett1991, Z will be there as a standard of care when/if the others fail, but these new and upcoming treatments are whats next…so you should defintely look at the newer treatments to see if they hold more promise.
I looked at the sites that are 'not yet recruiting', and there are going to be sites in NY, IL, TN and others…..
Since it is only in Phase I, I would guess that the BRAF/MEK trial might be the first option for you if you decide to go the trial route.
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- October 9, 2012 at 1:05 am
Kely,
I agree with awillett1991, Z will be there as a standard of care when/if the others fail, but these new and upcoming treatments are whats next…so you should defintely look at the newer treatments to see if they hold more promise.
I looked at the sites that are 'not yet recruiting', and there are going to be sites in NY, IL, TN and others…..
Since it is only in Phase I, I would guess that the BRAF/MEK trial might be the first option for you if you decide to go the trial route.
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- October 9, 2012 at 1:52 am
FYI, although this is a phase I trial, this is MDX-1106, the anti PD1 drug everyone was so excited about at ASCO. This drug has shown some exciting, lasting responses for melanoma patients.Best of luck!
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- October 9, 2012 at 1:52 am
FYI, although this is a phase I trial, this is MDX-1106, the anti PD1 drug everyone was so excited about at ASCO. This drug has shown some exciting, lasting responses for melanoma patients.Best of luck!
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- October 9, 2012 at 1:52 am
FYI, although this is a phase I trial, this is MDX-1106, the anti PD1 drug everyone was so excited about at ASCO. This drug has shown some exciting, lasting responses for melanoma patients.Best of luck!
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- October 9, 2012 at 1:05 am
Kely,
I agree with awillett1991, Z will be there as a standard of care when/if the others fail, but these new and upcoming treatments are whats next…so you should defintely look at the newer treatments to see if they hold more promise.
I looked at the sites that are 'not yet recruiting', and there are going to be sites in NY, IL, TN and others…..
Since it is only in Phase I, I would guess that the BRAF/MEK trial might be the first option for you if you decide to go the trial route.
-
- October 9, 2012 at 12:24 am
If it was me, I would definitely ask about this which is supposed to start ASAP.http://www.clinicaltrials.gov/ct2/show/NCT01621490
Zelboraf will be there, and remember it only works 50% of the time, often failing by month 7.
-
- October 9, 2012 at 12:25 am
If it was me, I would definitely ask about this which is supposed to start ASAP.http://www.clinicaltrials.gov/ct2/show/NCT01621490
Zelboraf will be there, and remember it only works 50% of the time, often failing by month 7.
-
- October 9, 2012 at 12:25 am
If it was me, I would definitely ask about this which is supposed to start ASAP.http://www.clinicaltrials.gov/ct2/show/NCT01621490
Zelboraf will be there, and remember it only works 50% of the time, often failing by month 7.
-
- October 9, 2012 at 12:25 am
If it was me, I would definitely ask about this which is supposed to start ASAP.http://www.clinicaltrials.gov/ct2/show/NCT01621490
Zelboraf will be there, and remember it only works 50% of the time, often failing by month 7.
-
- October 9, 2012 at 12:32 am
Kelly,
I was looking through past posts and please go look at the post on 9/30/2012 by Harry in Fair Oaks. The name of the post is GSK recruiting for BRAF/MEK Please go to that post and see where the trial is. Please know that alot of the therapies have BRAF but the MEK is key component that the others do not have. Please take a look at that post and try to pursue this trial. GOOD LUCK keep posting so we can help you
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- October 9, 2012 at 12:32 am
Kelly,
I was looking through past posts and please go look at the post on 9/30/2012 by Harry in Fair Oaks. The name of the post is GSK recruiting for BRAF/MEK Please go to that post and see where the trial is. Please know that alot of the therapies have BRAF but the MEK is key component that the others do not have. Please take a look at that post and try to pursue this trial. GOOD LUCK keep posting so we can help you
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- October 9, 2012 at 12:32 am
Kelly,
I was looking through past posts and please go look at the post on 9/30/2012 by Harry in Fair Oaks. The name of the post is GSK recruiting for BRAF/MEK Please go to that post and see where the trial is. Please know that alot of the therapies have BRAF but the MEK is key component that the others do not have. Please take a look at that post and try to pursue this trial. GOOD LUCK keep posting so we can help you
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- October 9, 2012 at 12:39 am
Kelly,
the trial that has the BRAF/MEK seems to be the most promising. Also, if you look at the criteria on the others, if you have had previously had treatment for either of these alone, you can't participate in THIS trial. In other words, if you start out with just Z or just IPI or just IL-2, I think when/if these stop working, you are excluded from this trial. This trial is in Tampa.
Good luck
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- October 9, 2012 at 12:39 am
Kelly,
the trial that has the BRAF/MEK seems to be the most promising. Also, if you look at the criteria on the others, if you have had previously had treatment for either of these alone, you can't participate in THIS trial. In other words, if you start out with just Z or just IPI or just IL-2, I think when/if these stop working, you are excluded from this trial. This trial is in Tampa.
Good luck
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- October 9, 2012 at 12:39 am
Kelly,
the trial that has the BRAF/MEK seems to be the most promising. Also, if you look at the criteria on the others, if you have had previously had treatment for either of these alone, you can't participate in THIS trial. In other words, if you start out with just Z or just IPI or just IL-2, I think when/if these stop working, you are excluded from this trial. This trial is in Tampa.
Good luck
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- October 9, 2012 at 2:10 am
The advantage of doing a clinical trial first is that if it does not work, you can always fall back to an FDA approved treatment like Zelboraf. However, if you take Zelboraf first and it doesn't work, you are excluded from many promising clinical trials. Fortunately (or perhaps unfortunately) you have experience looking into clinical trials, so you probably know how to do the research about them. Just don't sign up for one that has a placebo arm!
The BRAF/MEK clinical trial story is a little complicated, so I will try to be brief. BRAF and MEK are two different proteins that promote the growth of melanoma. Plexxicon and Hoffman-LaRoche worked together to develop Vemurafenib (trade name Zelboraf) that inhibits BRAF and kills most melanoma cells. A few months later, GlaxoSmithKline developed a very similar BRAF inhibitor called Dabrafenib and it works against melanoma, too. However, some melanoma cells do survive the BRAF inhibitors and can become resistant to either drug fairly quickly. Then the melanoma starts growing again.
Meanwhile, both pharmaceutical companies were developing drugs against the other melanoma protein, MEK. The drug companies got the idea to combine a BRAF inhibitor with a MEK inhibitor at the same time. The companies are hoping that a one-two punch of a BRAF inhibitor plus a MEK inhibitor at the same time will kill all melanoma cells and prevent them from developing resistance. So GSK and Plexxicon (now Genentech) are both conducting clinical trials of their respective BRAF inhibitor (Zelboraf or Dabrafenib) with or without their respective MEK inhibitor (Trametinib or GDC-0941).
Also in clinical trials are some treatments that have a completely different approach. These trials use ippi (FDA approved under trade name Yervoy), the PD-1 antibody, and/or interferon in an attempt to stimulate your own immune system to fight the melanoma. One trial, the TIK-ACT trial, takes your own T-cells that have already been "educated" to kill melanoma cells, gets them to multiply in a test tube, and then puts them back in your body. These immune-based methods are in an earlier phase of testing than the BRAF/MEK treatments but they may prove to be very successful.
I hope this information will help to speed your research and make your decision together with your doctors. While being diagnosed with Stage IV is a terrible blow, you have more options, and more effective options, than were available even one year ago. I suspect that you will be here for your husband and your children for a long, long time yet.
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- October 9, 2012 at 2:10 am
The advantage of doing a clinical trial first is that if it does not work, you can always fall back to an FDA approved treatment like Zelboraf. However, if you take Zelboraf first and it doesn't work, you are excluded from many promising clinical trials. Fortunately (or perhaps unfortunately) you have experience looking into clinical trials, so you probably know how to do the research about them. Just don't sign up for one that has a placebo arm!
The BRAF/MEK clinical trial story is a little complicated, so I will try to be brief. BRAF and MEK are two different proteins that promote the growth of melanoma. Plexxicon and Hoffman-LaRoche worked together to develop Vemurafenib (trade name Zelboraf) that inhibits BRAF and kills most melanoma cells. A few months later, GlaxoSmithKline developed a very similar BRAF inhibitor called Dabrafenib and it works against melanoma, too. However, some melanoma cells do survive the BRAF inhibitors and can become resistant to either drug fairly quickly. Then the melanoma starts growing again.
Meanwhile, both pharmaceutical companies were developing drugs against the other melanoma protein, MEK. The drug companies got the idea to combine a BRAF inhibitor with a MEK inhibitor at the same time. The companies are hoping that a one-two punch of a BRAF inhibitor plus a MEK inhibitor at the same time will kill all melanoma cells and prevent them from developing resistance. So GSK and Plexxicon (now Genentech) are both conducting clinical trials of their respective BRAF inhibitor (Zelboraf or Dabrafenib) with or without their respective MEK inhibitor (Trametinib or GDC-0941).
Also in clinical trials are some treatments that have a completely different approach. These trials use ippi (FDA approved under trade name Yervoy), the PD-1 antibody, and/or interferon in an attempt to stimulate your own immune system to fight the melanoma. One trial, the TIK-ACT trial, takes your own T-cells that have already been "educated" to kill melanoma cells, gets them to multiply in a test tube, and then puts them back in your body. These immune-based methods are in an earlier phase of testing than the BRAF/MEK treatments but they may prove to be very successful.
I hope this information will help to speed your research and make your decision together with your doctors. While being diagnosed with Stage IV is a terrible blow, you have more options, and more effective options, than were available even one year ago. I suspect that you will be here for your husband and your children for a long, long time yet.
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- October 9, 2012 at 2:10 am
The advantage of doing a clinical trial first is that if it does not work, you can always fall back to an FDA approved treatment like Zelboraf. However, if you take Zelboraf first and it doesn't work, you are excluded from many promising clinical trials. Fortunately (or perhaps unfortunately) you have experience looking into clinical trials, so you probably know how to do the research about them. Just don't sign up for one that has a placebo arm!
The BRAF/MEK clinical trial story is a little complicated, so I will try to be brief. BRAF and MEK are two different proteins that promote the growth of melanoma. Plexxicon and Hoffman-LaRoche worked together to develop Vemurafenib (trade name Zelboraf) that inhibits BRAF and kills most melanoma cells. A few months later, GlaxoSmithKline developed a very similar BRAF inhibitor called Dabrafenib and it works against melanoma, too. However, some melanoma cells do survive the BRAF inhibitors and can become resistant to either drug fairly quickly. Then the melanoma starts growing again.
Meanwhile, both pharmaceutical companies were developing drugs against the other melanoma protein, MEK. The drug companies got the idea to combine a BRAF inhibitor with a MEK inhibitor at the same time. The companies are hoping that a one-two punch of a BRAF inhibitor plus a MEK inhibitor at the same time will kill all melanoma cells and prevent them from developing resistance. So GSK and Plexxicon (now Genentech) are both conducting clinical trials of their respective BRAF inhibitor (Zelboraf or Dabrafenib) with or without their respective MEK inhibitor (Trametinib or GDC-0941).
Also in clinical trials are some treatments that have a completely different approach. These trials use ippi (FDA approved under trade name Yervoy), the PD-1 antibody, and/or interferon in an attempt to stimulate your own immune system to fight the melanoma. One trial, the TIK-ACT trial, takes your own T-cells that have already been "educated" to kill melanoma cells, gets them to multiply in a test tube, and then puts them back in your body. These immune-based methods are in an earlier phase of testing than the BRAF/MEK treatments but they may prove to be very successful.
I hope this information will help to speed your research and make your decision together with your doctors. While being diagnosed with Stage IV is a terrible blow, you have more options, and more effective options, than were available even one year ago. I suspect that you will be here for your husband and your children for a long, long time yet.
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- October 9, 2012 at 2:50 am
Hi Kelly,
I'm very happy that you posted here and are reaching out for information and the experience of others. I'm sorry for the news but am very happy that you finally have a definitive answer.
I'm going to email you. I'll be at Moffitt next week.
Stay Strong
KathieStage IV 7/05 Liver mets Stage IV is NOT an automatic death sentence
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- October 9, 2012 at 2:50 am
Hi Kelly,
I'm very happy that you posted here and are reaching out for information and the experience of others. I'm sorry for the news but am very happy that you finally have a definitive answer.
I'm going to email you. I'll be at Moffitt next week.
Stay Strong
KathieStage IV 7/05 Liver mets Stage IV is NOT an automatic death sentence
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- October 9, 2012 at 2:50 am
Hi Kelly,
I'm very happy that you posted here and are reaching out for information and the experience of others. I'm sorry for the news but am very happy that you finally have a definitive answer.
I'm going to email you. I'll be at Moffitt next week.
Stay Strong
KathieStage IV 7/05 Liver mets Stage IV is NOT an automatic death sentence
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