› Forums › General Melanoma Community › Ipilimumab and Mekinist together
- This topic has 42 replies, 4 voices, and was last updated 7 years, 10 months ago by
LizaC.
- Post
-
- August 12, 2016 at 10:55 pm
Hi
My partner is on day 4 of her first ipilimumab treatment. The cancer is progressing aggressively and we pray that the IPI starts kicking in. (She responded to brafi keytruda) why not ipi. .She went back on brafi for a short time 2 months ago and ct scan showed mixed response. Mainly in the liver, since then shes had internal liver radiation, radiation for bone mets.
We decided to go back on brafi but only the dabrafenib not mekinist due to side effects. Cancer has continued to progress. We spoke to Onco last night and asked about going back on braf full dose. He said no point with dabrafenib as she still got resistance, but I feel that the dose wasnt enough.. he suggested continue with Ipilimumab and we could bring in mekinist. Does anyone know much about how these 2 drugs are together?, I can find anything on the net.
Things are getting very desperate now.
Regards
Liza
(Partner to Melissa)
- Replies
-
-
- August 12, 2016 at 11:08 pm
Not sure how to edit my post.Nb. We decided to go back on brafi but only the dabrafenib and ONLY quarter, not mekinist as per Onco’s suggestion. We spoke to Onco last night and asked about going back on braf full dose. He said no point with dabrafenib as she still got resistance, but I feel that the dose wasnt enough..quarter compared to full dose plus mek. So we continue with ipi, wait week or 2 and if no improvement ie . Pain,how she physically feels then add mek..
I despise this disease.
-
- August 12, 2016 at 11:08 pm
Not sure how to edit my post.Nb. We decided to go back on brafi but only the dabrafenib and ONLY quarter, not mekinist as per Onco’s suggestion. We spoke to Onco last night and asked about going back on braf full dose. He said no point with dabrafenib as she still got resistance, but I feel that the dose wasnt enough..quarter compared to full dose plus mek. So we continue with ipi, wait week or 2 and if no improvement ie . Pain,how she physically feels then add mek..
I despise this disease.
-
- August 12, 2016 at 11:08 pm
Not sure how to edit my post.Nb. We decided to go back on brafi but only the dabrafenib and ONLY quarter, not mekinist as per Onco’s suggestion. We spoke to Onco last night and asked about going back on braf full dose. He said no point with dabrafenib as she still got resistance, but I feel that the dose wasnt enough..quarter compared to full dose plus mek. So we continue with ipi, wait week or 2 and if no improvement ie . Pain,how she physically feels then add mek..
I despise this disease.
-
- August 12, 2016 at 11:48 pm
I am a little confused re the report you are giving. First of all BRAF inhibitors should always be combined with a MEK inhibitor. Oddly enough this combo allows for fewer side effects as well as less tumor work-around. There are many BRAFi drugs and many MEKi….allowing for many combo's. Also…side effects are often well managed by a break, a change, or a variable dosing schedule. You may have already tried these things…but… There are a zillion articles on BRAFi on my blog…just use the search bubble.
Additionally…instead of just ipi…why not the ipi/nivo combo? Side effects are greater…but so are response rates.
Also…there is this out of ASCO this year in which vemurafenib is combined with atezolizumab: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-anti-pd1pdl1-combined-with.html
Here is a report from a world class melanoma expert about new melanoma options this year: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
I hope your friend is being followed by a melanoma specialist. Don't know if all this helps…but…. hang in there. Celeste
-
- August 13, 2016 at 1:19 am
Thanks Celeste. Its a mute point now, we just saw Onco and there would be too many side effects with just the mek, our Onco was clutching at straws as to other options but all we’ve got is ipi.My partner, Melissa has decided to stick with IPI. The IPI/Nivo combo isnt on the Australian PBS, and she doesnt fit criteria for trials.
We’re now organising hospice care, its got to this point. We still hope that IPI kicks in.. who knows who responds to these drugs..
Liza.
-
- August 13, 2016 at 1:19 am
Thanks Celeste. Its a mute point now, we just saw Onco and there would be too many side effects with just the mek, our Onco was clutching at straws as to other options but all we’ve got is ipi.My partner, Melissa has decided to stick with IPI. The IPI/Nivo combo isnt on the Australian PBS, and she doesnt fit criteria for trials.
We’re now organising hospice care, its got to this point. We still hope that IPI kicks in.. who knows who responds to these drugs..
Liza.
-
- August 13, 2016 at 1:19 am
Thanks Celeste. Its a mute point now, we just saw Onco and there would be too many side effects with just the mek, our Onco was clutching at straws as to other options but all we’ve got is ipi.My partner, Melissa has decided to stick with IPI. The IPI/Nivo combo isnt on the Australian PBS, and she doesnt fit criteria for trials.
We’re now organising hospice care, its got to this point. We still hope that IPI kicks in.. who knows who responds to these drugs..
Liza.
-
- August 15, 2016 at 5:32 pm
Thank you Celeste. First night in the hospice, its nearly 3am and it feels surreal that its come to this. The cancer is continuing to spread, even from 3 days ago..feeling the bumps on her stomach. All I can do is be here with her, love and support her. I still have hope, be it smaller than yesterday that the IPI may kick in, who knows..Liza
-
- August 15, 2016 at 5:32 pm
Thank you Celeste. First night in the hospice, its nearly 3am and it feels surreal that its come to this. The cancer is continuing to spread, even from 3 days ago..feeling the bumps on her stomach. All I can do is be here with her, love and support her. I still have hope, be it smaller than yesterday that the IPI may kick in, who knows..Liza
-
- August 15, 2016 at 5:32 pm
Thank you Celeste. First night in the hospice, its nearly 3am and it feels surreal that its come to this. The cancer is continuing to spread, even from 3 days ago..feeling the bumps on her stomach. All I can do is be here with her, love and support her. I still have hope, be it smaller than yesterday that the IPI may kick in, who knows..Liza
-
- August 15, 2016 at 6:33 pm
Have you asked about compassionate use for Ipi/Nivo? Not sure if they use that exact term there.. but ask her oncologist about this. It is appealing to get a drug even though it is not yet approved because all other options have run out. Here is a link you might want to check out:
https://www.tga.gov.au/form/special-access-scheme
My heart goes out to both of you,
-
- August 15, 2016 at 6:33 pm
Have you asked about compassionate use for Ipi/Nivo? Not sure if they use that exact term there.. but ask her oncologist about this. It is appealing to get a drug even though it is not yet approved because all other options have run out. Here is a link you might want to check out:
https://www.tga.gov.au/form/special-access-scheme
My heart goes out to both of you,
-
- August 15, 2016 at 6:33 pm
Have you asked about compassionate use for Ipi/Nivo? Not sure if they use that exact term there.. but ask her oncologist about this. It is appealing to get a drug even though it is not yet approved because all other options have run out. Here is a link you might want to check out:
https://www.tga.gov.au/form/special-access-scheme
My heart goes out to both of you,
-
- August 12, 2016 at 11:48 pm
I am a little confused re the report you are giving. First of all BRAF inhibitors should always be combined with a MEK inhibitor. Oddly enough this combo allows for fewer side effects as well as less tumor work-around. There are many BRAFi drugs and many MEKi….allowing for many combo's. Also…side effects are often well managed by a break, a change, or a variable dosing schedule. You may have already tried these things…but… There are a zillion articles on BRAFi on my blog…just use the search bubble.
Additionally…instead of just ipi…why not the ipi/nivo combo? Side effects are greater…but so are response rates.
Also…there is this out of ASCO this year in which vemurafenib is combined with atezolizumab: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-anti-pd1pdl1-combined-with.html
Here is a report from a world class melanoma expert about new melanoma options this year: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
I hope your friend is being followed by a melanoma specialist. Don't know if all this helps…but…. hang in there. Celeste
-
- August 12, 2016 at 11:48 pm
I am a little confused re the report you are giving. First of all BRAF inhibitors should always be combined with a MEK inhibitor. Oddly enough this combo allows for fewer side effects as well as less tumor work-around. There are many BRAFi drugs and many MEKi….allowing for many combo's. Also…side effects are often well managed by a break, a change, or a variable dosing schedule. You may have already tried these things…but… There are a zillion articles on BRAFi on my blog…just use the search bubble.
Additionally…instead of just ipi…why not the ipi/nivo combo? Side effects are greater…but so are response rates.
Also…there is this out of ASCO this year in which vemurafenib is combined with atezolizumab: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-anti-pd1pdl1-combined-with.html
Here is a report from a world class melanoma expert about new melanoma options this year: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
I hope your friend is being followed by a melanoma specialist. Don't know if all this helps…but…. hang in there. Celeste
-
- August 14, 2016 at 1:50 pm
Liza:
I apologize if this has been addressed earlier, but have you and Melissa looked into clniical trials? I believe a couple of trials with nivolumab are open in Australia, as well as a trial of ipi plus chemo. Of course it does matter where you live and if they are in a center that is reasonably close.
Tim–MRF
-
- August 14, 2016 at 1:50 pm
Liza:
I apologize if this has been addressed earlier, but have you and Melissa looked into clniical trials? I believe a couple of trials with nivolumab are open in Australia, as well as a trial of ipi plus chemo. Of course it does matter where you live and if they are in a center that is reasonably close.
Tim–MRF
-
- August 14, 2016 at 1:50 pm
Liza:
I apologize if this has been addressed earlier, but have you and Melissa looked into clniical trials? I believe a couple of trials with nivolumab are open in Australia, as well as a trial of ipi plus chemo. Of course it does matter where you live and if they are in a center that is reasonably close.
Tim–MRF
-
- August 15, 2016 at 12:27 am
Dear Liza,
I've been thinking of you and Melissa…did have this one last thought….acknowleding that I am not in either of your shoes…. As you are more than well aware….Australia is not just a hotbed of roo's but also of melanoma patients. Were I you, I would contact Dr. John F Thompson..in Sydney believe….as he appears in most of the research from your country. He is the lead guy. He may have nothing more to offer…but what the hell…you'll know you gave it every shot. Yours, celeste
-
- August 15, 2016 at 12:27 am
Dear Liza,
I've been thinking of you and Melissa…did have this one last thought….acknowleding that I am not in either of your shoes…. As you are more than well aware….Australia is not just a hotbed of roo's but also of melanoma patients. Were I you, I would contact Dr. John F Thompson..in Sydney believe….as he appears in most of the research from your country. He is the lead guy. He may have nothing more to offer…but what the hell…you'll know you gave it every shot. Yours, celeste
-
- August 15, 2016 at 6:03 pm
Thanks Celeste for that info..You’re right about Australia and Melanoma,though we were shocked when diagnosed with melanoma because no primary was found, never has been (she was originally diagnosed with breast cancer in August 2014 after finding a minute lump in her breast. Biopsy/lump was way to small to analyse..cut a long story short, diagnosed with Melanoma December 2014, stage 4. We found out she was braf + , 12 great months with brafi, 98% shrinkage and life became relatively normal again, I took a year off and we had a great time together, ..approx 12 months later, resistance, bam!.
I still find it hard to get my head around that no primary has ever found. finding the primary. Anyway, I’m rambling.. Ill check out Dr Thompson, I’ll call his office nothing to lose..
Kind Regards,
Liza -
- August 15, 2016 at 6:03 pm
Thanks Celeste for that info..You’re right about Australia and Melanoma,though we were shocked when diagnosed with melanoma because no primary was found, never has been (she was originally diagnosed with breast cancer in August 2014 after finding a minute lump in her breast. Biopsy/lump was way to small to analyse..cut a long story short, diagnosed with Melanoma December 2014, stage 4. We found out she was braf + , 12 great months with brafi, 98% shrinkage and life became relatively normal again, I took a year off and we had a great time together, ..approx 12 months later, resistance, bam!.
I still find it hard to get my head around that no primary has ever found. finding the primary. Anyway, I’m rambling.. Ill check out Dr Thompson, I’ll call his office nothing to lose..
Kind Regards,
Liza -
- August 15, 2016 at 6:03 pm
Thanks Celeste for that info..You’re right about Australia and Melanoma,though we were shocked when diagnosed with melanoma because no primary was found, never has been (she was originally diagnosed with breast cancer in August 2014 after finding a minute lump in her breast. Biopsy/lump was way to small to analyse..cut a long story short, diagnosed with Melanoma December 2014, stage 4. We found out she was braf + , 12 great months with brafi, 98% shrinkage and life became relatively normal again, I took a year off and we had a great time together, ..approx 12 months later, resistance, bam!.
I still find it hard to get my head around that no primary has ever found. finding the primary. Anyway, I’m rambling.. Ill check out Dr Thompson, I’ll call his office nothing to lose..
Kind Regards,
Liza -
- August 15, 2016 at 6:27 pm
Thanks Celeste for that info..You’re right about Australia and Melanoma,though we were shocked when diagnosed with melanoma because no primary was found, never has been (she was originally diagnosed with breast cancer in August 2014 after finding a minute lump in her breast. Biopsy/lump was way to small to analyse..cut a long story short, diagnosed with Melanoma December 2014, stage 4. We found out she was braf + , 12 great months with brafi, 98% shrinkage and life became relatively normal again, I took a year off and we had a great time together, ..approx 12 months later, resistance, bam!. Keytruda saved her life in January,got rid of all the melanoma that went into her bone marrow..stabilised other areas but then got resistant.. back on brafi April till 3 weeks ago, (a mixed response) still progression in liver, various other parts, serts sphere internal radiation on life 4 weeks ago, last 2 weeks radiation, including this morning on femur.. surgery 9 weeks ago..including hysterectomy.. Celeste, we’ve done as much as we can, its like trying to put out spot fires.. IPI is it. Our Oncologist (Dr Kichendasse) said that if she’s a responder, we may see changes next week or 2. We’ll see. I just keep praying.. u just never know..
I still find it hard to get my head around that no primary has ever found. finding the primary. Anyway, I’m rambling.. Ill check out Dr Thompson, I’ll call his office nothing to lose..
Kind Regards,
Liza -
- August 15, 2016 at 6:27 pm
Thanks Celeste for that info..You’re right about Australia and Melanoma,though we were shocked when diagnosed with melanoma because no primary was found, never has been (she was originally diagnosed with breast cancer in August 2014 after finding a minute lump in her breast. Biopsy/lump was way to small to analyse..cut a long story short, diagnosed with Melanoma December 2014, stage 4. We found out she was braf + , 12 great months with brafi, 98% shrinkage and life became relatively normal again, I took a year off and we had a great time together, ..approx 12 months later, resistance, bam!. Keytruda saved her life in January,got rid of all the melanoma that went into her bone marrow..stabilised other areas but then got resistant.. back on brafi April till 3 weeks ago, (a mixed response) still progression in liver, various other parts, serts sphere internal radiation on life 4 weeks ago, last 2 weeks radiation, including this morning on femur.. surgery 9 weeks ago..including hysterectomy.. Celeste, we’ve done as much as we can, its like trying to put out spot fires.. IPI is it. Our Oncologist (Dr Kichendasse) said that if she’s a responder, we may see changes next week or 2. We’ll see. I just keep praying.. u just never know..
I still find it hard to get my head around that no primary has ever found. finding the primary. Anyway, I’m rambling.. Ill check out Dr Thompson, I’ll call his office nothing to lose..
Kind Regards,
Liza -
- August 15, 2016 at 6:27 pm
Thanks Celeste for that info..You’re right about Australia and Melanoma,though we were shocked when diagnosed with melanoma because no primary was found, never has been (she was originally diagnosed with breast cancer in August 2014 after finding a minute lump in her breast. Biopsy/lump was way to small to analyse..cut a long story short, diagnosed with Melanoma December 2014, stage 4. We found out she was braf + , 12 great months with brafi, 98% shrinkage and life became relatively normal again, I took a year off and we had a great time together, ..approx 12 months later, resistance, bam!. Keytruda saved her life in January,got rid of all the melanoma that went into her bone marrow..stabilised other areas but then got resistant.. back on brafi April till 3 weeks ago, (a mixed response) still progression in liver, various other parts, serts sphere internal radiation on life 4 weeks ago, last 2 weeks radiation, including this morning on femur.. surgery 9 weeks ago..including hysterectomy.. Celeste, we’ve done as much as we can, its like trying to put out spot fires.. IPI is it. Our Oncologist (Dr Kichendasse) said that if she’s a responder, we may see changes next week or 2. We’ll see. I just keep praying.. u just never know..
I still find it hard to get my head around that no primary has ever found. finding the primary. Anyway, I’m rambling.. Ill check out Dr Thompson, I’ll call his office nothing to lose..
Kind Regards,
Liza -
- August 16, 2016 at 1:24 am
Liza,
You know what you've done and what you've been through….we….me…we're just grasping at straws because we feel your pain. It sounds like you and Melissa have put up an amazing fight….have tried, as you noted, pretty much everything. Feel proud of that. You have no need to listen to me or anyone else. But you have something to be even more proud of. You have made it clear to all of us how much you love and care for Melissa. If we know that…I am CERTAIN Melissa knows that and more! And is there any better gift? To know while we are here, living…how much our dear ones think of us? It is all that any of us can hope for and something I am certain you have made clear to your dear Melissa. Hang in there. Holding you both close. Let us know what we can do. Yours, celeste
-
- August 16, 2016 at 1:47 am
Thank you Celeste for your kind words, it means a lot to be part of an smazingly brave and kind community. Ive been reading posts on this site for 2 years. Gaining strength l, hope and knowledge.Melissa knows Im here for her, always have been. I’ve got good supports here and am now utilising them.. xx
-
- August 16, 2016 at 1:47 am
Thank you Celeste for your kind words, it means a lot to be part of an smazingly brave and kind community. Ive been reading posts on this site for 2 years. Gaining strength l, hope and knowledge.Melissa knows Im here for her, always have been. I’ve got good supports here and am now utilising them.. xx
-
- August 16, 2016 at 1:47 am
Thank you Celeste for your kind words, it means a lot to be part of an smazingly brave and kind community. Ive been reading posts on this site for 2 years. Gaining strength l, hope and knowledge.Melissa knows Im here for her, always have been. I’ve got good supports here and am now utilising them.. xx
-
- August 16, 2016 at 1:24 am
Liza,
You know what you've done and what you've been through….we….me…we're just grasping at straws because we feel your pain. It sounds like you and Melissa have put up an amazing fight….have tried, as you noted, pretty much everything. Feel proud of that. You have no need to listen to me or anyone else. But you have something to be even more proud of. You have made it clear to all of us how much you love and care for Melissa. If we know that…I am CERTAIN Melissa knows that and more! And is there any better gift? To know while we are here, living…how much our dear ones think of us? It is all that any of us can hope for and something I am certain you have made clear to your dear Melissa. Hang in there. Holding you both close. Let us know what we can do. Yours, celeste
-
- August 16, 2016 at 1:24 am
Liza,
You know what you've done and what you've been through….we….me…we're just grasping at straws because we feel your pain. It sounds like you and Melissa have put up an amazing fight….have tried, as you noted, pretty much everything. Feel proud of that. You have no need to listen to me or anyone else. But you have something to be even more proud of. You have made it clear to all of us how much you love and care for Melissa. If we know that…I am CERTAIN Melissa knows that and more! And is there any better gift? To know while we are here, living…how much our dear ones think of us? It is all that any of us can hope for and something I am certain you have made clear to your dear Melissa. Hang in there. Holding you both close. Let us know what we can do. Yours, celeste
-
- August 15, 2016 at 12:27 am
Dear Liza,
I've been thinking of you and Melissa…did have this one last thought….acknowleding that I am not in either of your shoes…. As you are more than well aware….Australia is not just a hotbed of roo's but also of melanoma patients. Were I you, I would contact Dr. John F Thompson..in Sydney believe….as he appears in most of the research from your country. He is the lead guy. He may have nothing more to offer…but what the hell…you'll know you gave it every shot. Yours, celeste
-
- You must be logged in to reply to this topic.