› Forums › General Melanoma Community › Surviving Zelboraf “wash out” plus antibody ramp-up
- This topic has 33 replies, 8 voices, and was last updated 12 years, 11 months ago by
buffcody.
- Post
-
- December 22, 2012 at 10:13 pm
My brother was diagnosed 6 months ago Stage IV with mets all over, including the brain. A combination of WBR and Zelboraf worked well for 5 months. Recently, a liver tumor started growing again and his oncologist said that he was becoming resistant to the Z.
My brother was diagnosed 6 months ago Stage IV with mets all over, including the brain. A combination of WBR and Zelboraf worked well for 5 months. Recently, a liver tumor started growing again and his oncologist said that he was becoming resistant to the Z. He is now off Z for a 30 day "wash out" period and then he will either get into an anti-PD-1 clinical trial (fingers crossed) or he will try try Ipi. Both of these treatments are based on monoclonal antibodies.
My concern is that melanoma that is resistant to Z often comes back more aggressive than it was originally. I think I'm beginning to see signs that his brain tumors are growing already (slurred speech, extreme fatigue, unstable walk) although this could just be paranoia on my part. My concern is that his tumors will grow so fast that he won't survive the wash out period plus the 4-8 weeks it takes these antibody-based treatments to exert an effect. But, really, what choice does he have? Any hopeful stories out there? Any suggestions?
- Replies
-
-
- December 22, 2012 at 11:33 pm
With the understanding that my husband is Braf negative and so has NO personal experience with Zelboraf, I will tell you what we know from spending several weeks in the hospital in Houston last year. I know that at least a few of the doctors at MDAnderson, feel it’s a mistake to stop Zelboraf completely upon reoccurrence. They mentioned that they feel the patient should stay on the Braf drugs, with other things added, such as IPI or chemos. I understand that your brother needs to wash out from Zelboraf for the anti pd1 trial but if he doesn’t get into that trial, consider combining Zelboraf and Ipi, especially if you think things are progressing quickly. God bless and keep up fighting and advocating for your brother! Valerie (Phil’s wife) -
- December 22, 2012 at 11:33 pm
With the understanding that my husband is Braf negative and so has NO personal experience with Zelboraf, I will tell you what we know from spending several weeks in the hospital in Houston last year. I know that at least a few of the doctors at MDAnderson, feel it’s a mistake to stop Zelboraf completely upon reoccurrence. They mentioned that they feel the patient should stay on the Braf drugs, with other things added, such as IPI or chemos. I understand that your brother needs to wash out from Zelboraf for the anti pd1 trial but if he doesn’t get into that trial, consider combining Zelboraf and Ipi, especially if you think things are progressing quickly. God bless and keep up fighting and advocating for your brother! Valerie (Phil’s wife)-
- December 23, 2012 at 12:42 am
Thanks, Valerie. I also thought of combining Zel and Ipi. Unfortunately, my brother's oncologist refused to do that because it is an "off label" use and the VA prohibits such things. Actually, I've heard a couple of rumors that the clinical trials combining Zelboraf and Ipi are seeing significant liver toxicity. So maybe that combination will prove to be contraindicated for everyone.
-
- December 23, 2012 at 12:42 am
Thanks, Valerie. I also thought of combining Zel and Ipi. Unfortunately, my brother's oncologist refused to do that because it is an "off label" use and the VA prohibits such things. Actually, I've heard a couple of rumors that the clinical trials combining Zelboraf and Ipi are seeing significant liver toxicity. So maybe that combination will prove to be contraindicated for everyone.
-
- December 23, 2012 at 12:42 am
Thanks, Valerie. I also thought of combining Zel and Ipi. Unfortunately, my brother's oncologist refused to do that because it is an "off label" use and the VA prohibits such things. Actually, I've heard a couple of rumors that the clinical trials combining Zelboraf and Ipi are seeing significant liver toxicity. So maybe that combination will prove to be contraindicated for everyone.
-
- December 22, 2012 at 11:33 pm
With the understanding that my husband is Braf negative and so has NO personal experience with Zelboraf, I will tell you what we know from spending several weeks in the hospital in Houston last year. I know that at least a few of the doctors at MDAnderson, feel it’s a mistake to stop Zelboraf completely upon reoccurrence. They mentioned that they feel the patient should stay on the Braf drugs, with other things added, such as IPI or chemos. I understand that your brother needs to wash out from Zelboraf for the anti pd1 trial but if he doesn’t get into that trial, consider combining Zelboraf and Ipi, especially if you think things are progressing quickly. God bless and keep up fighting and advocating for your brother! Valerie (Phil’s wife) -
- December 23, 2012 at 1:53 am
I can’t speak to Anti PD1 but for Yervoy the standard first set of scans to evaluate for a possible response is at 12 weeks after starting, NOT 4-8. Often it takes longer to kick in. they scan again at 24 wks. This would be on top of any wash out period. This is not to say that people on here haven’t responded sooner, it’s just not typical. My understanding is that it takes 2 weeks for Zel to completely leave your system, but I understand trials want 30 days.My Mel was more aggressive after I stopped Z, and I was/am still responding to it.
It’s always hard to know what to do, hopefully you are consulting with a melanoma specialist who is up front and clear with you on the exact trial requirements, because that is a whole other gamble and adds waiting time.
Best of luck to you and peace with your decision.
-
- December 23, 2012 at 1:53 am
I can’t speak to Anti PD1 but for Yervoy the standard first set of scans to evaluate for a possible response is at 12 weeks after starting, NOT 4-8. Often it takes longer to kick in. they scan again at 24 wks. This would be on top of any wash out period. This is not to say that people on here haven’t responded sooner, it’s just not typical. My understanding is that it takes 2 weeks for Zel to completely leave your system, but I understand trials want 30 days.My Mel was more aggressive after I stopped Z, and I was/am still responding to it.
It’s always hard to know what to do, hopefully you are consulting with a melanoma specialist who is up front and clear with you on the exact trial requirements, because that is a whole other gamble and adds waiting time.
Best of luck to you and peace with your decision.
-
- December 23, 2012 at 1:05 pm
Thank you, Amy. You're right, of course. Ipi and the other immune-based therapies work slowly and the first scans aren't usually done until the 12 week mark. My figure of 4-8 weeks was a mixture of guess and wishful thinking. If they can SEE the tumors shrinking at 12 weeks, the ipi may have actually staretd to have its effect after 4 or 8 weeks. That's all I meant.
And yes, we will be meeting with Dr. Gibney at Moffitt next week. I'm sure he will explain all the pros and cons of any trial my brother may be elegible for, including the waiting time. My brother will have some tough decisions to make. I just want to be prepared with as much solid information as I can so I will be able to help him decide.
-
- December 23, 2012 at 1:05 pm
Thank you, Amy. You're right, of course. Ipi and the other immune-based therapies work slowly and the first scans aren't usually done until the 12 week mark. My figure of 4-8 weeks was a mixture of guess and wishful thinking. If they can SEE the tumors shrinking at 12 weeks, the ipi may have actually staretd to have its effect after 4 or 8 weeks. That's all I meant.
And yes, we will be meeting with Dr. Gibney at Moffitt next week. I'm sure he will explain all the pros and cons of any trial my brother may be elegible for, including the waiting time. My brother will have some tough decisions to make. I just want to be prepared with as much solid information as I can so I will be able to help him decide.
-
- December 23, 2012 at 1:05 pm
Thank you, Amy. You're right, of course. Ipi and the other immune-based therapies work slowly and the first scans aren't usually done until the 12 week mark. My figure of 4-8 weeks was a mixture of guess and wishful thinking. If they can SEE the tumors shrinking at 12 weeks, the ipi may have actually staretd to have its effect after 4 or 8 weeks. That's all I meant.
And yes, we will be meeting with Dr. Gibney at Moffitt next week. I'm sure he will explain all the pros and cons of any trial my brother may be elegible for, including the waiting time. My brother will have some tough decisions to make. I just want to be prepared with as much solid information as I can so I will be able to help him decide.
-
- December 23, 2012 at 1:53 am
I can’t speak to Anti PD1 but for Yervoy the standard first set of scans to evaluate for a possible response is at 12 weeks after starting, NOT 4-8. Often it takes longer to kick in. they scan again at 24 wks. This would be on top of any wash out period. This is not to say that people on here haven’t responded sooner, it’s just not typical. My understanding is that it takes 2 weeks for Zel to completely leave your system, but I understand trials want 30 days.My Mel was more aggressive after I stopped Z, and I was/am still responding to it.
It’s always hard to know what to do, hopefully you are consulting with a melanoma specialist who is up front and clear with you on the exact trial requirements, because that is a whole other gamble and adds waiting time.
Best of luck to you and peace with your decision.
-
- December 23, 2012 at 4:14 am
As your brother is doing the wash out you might want to look further into the antipd 1 . My onc told me that most of the antipd1 trials now mean you have to do ipi first. You might ask the Dr. thought if your brother needs to do the ipi first. Also antipd 1 has to have stable brain mets.
When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.
You are a great sister to your brother!
Linda
-
- December 23, 2012 at 4:14 am
As your brother is doing the wash out you might want to look further into the antipd 1 . My onc told me that most of the antipd1 trials now mean you have to do ipi first. You might ask the Dr. thought if your brother needs to do the ipi first. Also antipd 1 has to have stable brain mets.
When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.
You are a great sister to your brother!
Linda
-
- December 23, 2012 at 1:12 pm
Thanks, Linda. I hadn't heard that you have to taken ipi before you can try anti-PD1. I hope that is not the case for all anti-PD1 clinical trials! As for the stable brain mets, I know that is important. My brother's mets were stable as of early December. That is one reason why I am somewhat hopeful about him getting into a trial. That is also why I am being vigilant (probably hypervigilant) looking for signs of CNS problems while he is off Zelboraf.
Thanks, also, for the warning about staying out of the sun and watching for squamous cell carcinomas. Will do!
-
- December 23, 2012 at 1:12 pm
Thanks, Linda. I hadn't heard that you have to taken ipi before you can try anti-PD1. I hope that is not the case for all anti-PD1 clinical trials! As for the stable brain mets, I know that is important. My brother's mets were stable as of early December. That is one reason why I am somewhat hopeful about him getting into a trial. That is also why I am being vigilant (probably hypervigilant) looking for signs of CNS problems while he is off Zelboraf.
Thanks, also, for the warning about staying out of the sun and watching for squamous cell carcinomas. Will do!
-
- December 23, 2012 at 1:12 pm
Thanks, Linda. I hadn't heard that you have to taken ipi before you can try anti-PD1. I hope that is not the case for all anti-PD1 clinical trials! As for the stable brain mets, I know that is important. My brother's mets were stable as of early December. That is one reason why I am somewhat hopeful about him getting into a trial. That is also why I am being vigilant (probably hypervigilant) looking for signs of CNS problems while he is off Zelboraf.
Thanks, also, for the warning about staying out of the sun and watching for squamous cell carcinomas. Will do!
-
- December 23, 2012 at 4:14 am
As your brother is doing the wash out you might want to look further into the antipd 1 . My onc told me that most of the antipd1 trials now mean you have to do ipi first. You might ask the Dr. thought if your brother needs to do the ipi first. Also antipd 1 has to have stable brain mets.
When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.
You are a great sister to your brother!
Linda
-
- December 23, 2012 at 8:56 am
Hi Pat,
Your definitely a GREAT sister! Your brother is very lucky to have you and I’m sure you feel lucky to have him! I can’t answer your questions but I hope someone else can. So after having WBR they can’t do anymore SRS? How many brain lets does he have? I wonder if they can do surgery? I’m sure you’ve thought about all those things. When is he starting ipi? Hopefully it works quickly. I have read some people respond quicker then others so there’s hope. Hang in there! With this damn disease there are a lot of ” what ifs” but stay positive!
All my love
Denise -
- December 23, 2012 at 8:56 am
Hi Pat,
Your definitely a GREAT sister! Your brother is very lucky to have you and I’m sure you feel lucky to have him! I can’t answer your questions but I hope someone else can. So after having WBR they can’t do anymore SRS? How many brain lets does he have? I wonder if they can do surgery? I’m sure you’ve thought about all those things. When is he starting ipi? Hopefully it works quickly. I have read some people respond quicker then others so there’s hope. Hang in there! With this damn disease there are a lot of ” what ifs” but stay positive!
All my love
Denise-
- December 23, 2012 at 1:23 pm
Thanks, Denise. With all that you have been going through lately, you are super generous to continue reaching out to help the rest of us here. You're a mensch!
SRS can be done before or after WBR, or both. WBR can only be done once, but SRS can be done multiple times. My brother started with 5 brain mets and many others throughout his body. One brain met was very near the brain stem, which is particularly dangerous. WBR + Zelboraf stabilized or killed them all (it's hard to tell dead vs dormant via MRI). He develped one more brain met a few months later and that was treated with SRS in early October. By early December there was NED in the brain. There was, alas, a growing met in his liver. So his oncologist stopped Zelboraf and began preparing him for ipi in January. That's where we're at now. The uncertainty and "what ifs" are particularly hard for me to take (my brother is much more laid back about all this than I am). But I will take your advice a stay positive!
-
- December 23, 2012 at 1:23 pm
Thanks, Denise. With all that you have been going through lately, you are super generous to continue reaching out to help the rest of us here. You're a mensch!
SRS can be done before or after WBR, or both. WBR can only be done once, but SRS can be done multiple times. My brother started with 5 brain mets and many others throughout his body. One brain met was very near the brain stem, which is particularly dangerous. WBR + Zelboraf stabilized or killed them all (it's hard to tell dead vs dormant via MRI). He develped one more brain met a few months later and that was treated with SRS in early October. By early December there was NED in the brain. There was, alas, a growing met in his liver. So his oncologist stopped Zelboraf and began preparing him for ipi in January. That's where we're at now. The uncertainty and "what ifs" are particularly hard for me to take (my brother is much more laid back about all this than I am). But I will take your advice a stay positive!
-
- December 23, 2012 at 1:23 pm
Thanks, Denise. With all that you have been going through lately, you are super generous to continue reaching out to help the rest of us here. You're a mensch!
SRS can be done before or after WBR, or both. WBR can only be done once, but SRS can be done multiple times. My brother started with 5 brain mets and many others throughout his body. One brain met was very near the brain stem, which is particularly dangerous. WBR + Zelboraf stabilized or killed them all (it's hard to tell dead vs dormant via MRI). He develped one more brain met a few months later and that was treated with SRS in early October. By early December there was NED in the brain. There was, alas, a growing met in his liver. So his oncologist stopped Zelboraf and began preparing him for ipi in January. That's where we're at now. The uncertainty and "what ifs" are particularly hard for me to take (my brother is much more laid back about all this than I am). But I will take your advice a stay positive!
-
- December 23, 2012 at 8:56 am
Hi Pat,
Your definitely a GREAT sister! Your brother is very lucky to have you and I’m sure you feel lucky to have him! I can’t answer your questions but I hope someone else can. So after having WBR they can’t do anymore SRS? How many brain lets does he have? I wonder if they can do surgery? I’m sure you’ve thought about all those things. When is he starting ipi? Hopefully it works quickly. I have read some people respond quicker then others so there’s hope. Hang in there! With this damn disease there are a lot of ” what ifs” but stay positive!
All my love
Denise -
- December 25, 2012 at 10:45 am
Wondering what immunotherapy trial will permit brain mets. Yervoy* Ipi)? I don't know of any Anti PD 1 trials that will accept brain mets unless they are stable.
-
- You must be logged in to reply to this topic.