› Forums › General Melanoma Community › Progressed on BRAF / MEK after 5 months- now Ipi
- This topic has 21 replies, 6 voices, and was last updated 9 years, 8 months ago by
rick1981.
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- July 26, 2014 at 7:57 pm
Hi all,
– diagnosed with stage IV in Februrary with lots of tumors in lungs, chest, abdomen, liver, bones
– good initial response to Taf / Mek, last scans in May showed considerable shrinkage everywhere
– bloodwork in June already not 100% ok so put staging one month earlier to July 21
– results show considerable growth in chest, lunhs, one liver met shrinking, one growing….bones stable. I got chest pain and cough and I am scared to death which I guess is kind of normal.
Guess that's it for the combo. Discussed with my specialist. Next step will be Ipi and continuation of Taf with just short breaks before and after the infusions. He said that there are good results from an Australian Phase 1 trial with that Combo. He hopes that Taf will put kind of a brake on tumor growth as my burden is rather high until Ipi kicks in He says it is important to discontinue Mek as this caused severe troubles in combination with Ipi.
next option if something goes wrong will be Anti-Pd1 EAP. I hope, however, not to fail Ipi.
any comments, suggestions and uplifting words are welcome!
Thanks to all of you who are of such great help in dealing with this illness.
Chris
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- July 26, 2014 at 8:55 pm
Chris,
I read one of your recent post on MIF which had me worried about your status. As always you seem to be very thorough and thoughtful in your approach and it sounds like you have a good plan. I hope ipi is the silver bullet for you also. The one thought/recommendation I might suggesti is to have a good plan in place with your docs to define what exactly a "ipi fail" is going to be. Even though ipi can have a delayed reaction, with your heavy tumor burden I would be pushing for a failure call if disease progresses even a little after starting. The other nice thing about that is if you can get a quick switch to the pd1 drug you would get somewhat of a combo effect which seems to be the best thing going right now. Best. Of luck Chris. I'm pulling for you!
Brian
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- July 26, 2014 at 8:55 pm
Chris,
I read one of your recent post on MIF which had me worried about your status. As always you seem to be very thorough and thoughtful in your approach and it sounds like you have a good plan. I hope ipi is the silver bullet for you also. The one thought/recommendation I might suggesti is to have a good plan in place with your docs to define what exactly a "ipi fail" is going to be. Even though ipi can have a delayed reaction, with your heavy tumor burden I would be pushing for a failure call if disease progresses even a little after starting. The other nice thing about that is if you can get a quick switch to the pd1 drug you would get somewhat of a combo effect which seems to be the best thing going right now. Best. Of luck Chris. I'm pulling for you!
Brian
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- July 26, 2014 at 9:45 pm
Chris, I'm newly diagnosed as of this week and scared to death, too. Waiting for the docs to assess the brain mri and abdominal ct and decide which gene to stop dead (ipi, mentioned). Thanks for posting your treatment plan. I'm praying you will have success in beating this blasted thing. Thinking of you. Keep on posting. Joanne
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- July 26, 2014 at 9:45 pm
Chris, I'm newly diagnosed as of this week and scared to death, too. Waiting for the docs to assess the brain mri and abdominal ct and decide which gene to stop dead (ipi, mentioned). Thanks for posting your treatment plan. I'm praying you will have success in beating this blasted thing. Thinking of you. Keep on posting. Joanne
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- July 26, 2014 at 9:45 pm
Chris, I'm newly diagnosed as of this week and scared to death, too. Waiting for the docs to assess the brain mri and abdominal ct and decide which gene to stop dead (ipi, mentioned). Thanks for posting your treatment plan. I'm praying you will have success in beating this blasted thing. Thinking of you. Keep on posting. Joanne
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- July 27, 2014 at 5:33 am
Chris, I'm sorry to hear this news of disease progression, but am reassured by the plans that you and your medical team are making. It's hard sometimes for me and others to know all of the regulations and other influences like insurance, state health care, trials available, etc., affecting individual decisions (I believe you are in Austria?) but I think you are doing a great job navigating that and making wise decisions. Having read many of your posts, my best piece of advice would be to keep that up — don't lose that inquisitive drive to understand your disease and the options available to you, even before you might need them. I shouldn't use the analogy, because I'm a terrible chess player, but understanding what moves your opponent (melanoma in this case) might make several moves ahead and then thinking about how you might respond is a smart approach, so take a moment and be proud that you're doing that.
I also really like Brian's suggestion of defining an "ipi fail" with your doctors ahead of time. Again, it's about planning, and you have the time to do that right now. From what I've discussed with my own doctors, primarily my medical oncologist, the official "rules" for failing ipilimumab, as defined by regulators, pharmaceutical companies, and trial administrators, are pretty vague — I haven't seen an official definition published anywhere that includes anything like RECIST 1.1 or other measurements, and I think that works in your favor as you plan. But agreeing up front with your own doctors and medical team allows you to make those right next steps.
Do you know when you'll be starting ipi? Please keep us posted. Wishing you the best, Joe
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- July 27, 2014 at 5:33 am
Chris, I'm sorry to hear this news of disease progression, but am reassured by the plans that you and your medical team are making. It's hard sometimes for me and others to know all of the regulations and other influences like insurance, state health care, trials available, etc., affecting individual decisions (I believe you are in Austria?) but I think you are doing a great job navigating that and making wise decisions. Having read many of your posts, my best piece of advice would be to keep that up — don't lose that inquisitive drive to understand your disease and the options available to you, even before you might need them. I shouldn't use the analogy, because I'm a terrible chess player, but understanding what moves your opponent (melanoma in this case) might make several moves ahead and then thinking about how you might respond is a smart approach, so take a moment and be proud that you're doing that.
I also really like Brian's suggestion of defining an "ipi fail" with your doctors ahead of time. Again, it's about planning, and you have the time to do that right now. From what I've discussed with my own doctors, primarily my medical oncologist, the official "rules" for failing ipilimumab, as defined by regulators, pharmaceutical companies, and trial administrators, are pretty vague — I haven't seen an official definition published anywhere that includes anything like RECIST 1.1 or other measurements, and I think that works in your favor as you plan. But agreeing up front with your own doctors and medical team allows you to make those right next steps.
Do you know when you'll be starting ipi? Please keep us posted. Wishing you the best, Joe
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- July 27, 2014 at 5:33 am
Chris, I'm sorry to hear this news of disease progression, but am reassured by the plans that you and your medical team are making. It's hard sometimes for me and others to know all of the regulations and other influences like insurance, state health care, trials available, etc., affecting individual decisions (I believe you are in Austria?) but I think you are doing a great job navigating that and making wise decisions. Having read many of your posts, my best piece of advice would be to keep that up — don't lose that inquisitive drive to understand your disease and the options available to you, even before you might need them. I shouldn't use the analogy, because I'm a terrible chess player, but understanding what moves your opponent (melanoma in this case) might make several moves ahead and then thinking about how you might respond is a smart approach, so take a moment and be proud that you're doing that.
I also really like Brian's suggestion of defining an "ipi fail" with your doctors ahead of time. Again, it's about planning, and you have the time to do that right now. From what I've discussed with my own doctors, primarily my medical oncologist, the official "rules" for failing ipilimumab, as defined by regulators, pharmaceutical companies, and trial administrators, are pretty vague — I haven't seen an official definition published anywhere that includes anything like RECIST 1.1 or other measurements, and I think that works in your favor as you plan. But agreeing up front with your own doctors and medical team allows you to make those right next steps.
Do you know when you'll be starting ipi? Please keep us posted. Wishing you the best, Joe
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- July 27, 2014 at 8:43 am
Hi all,
this is what I call uplifting responses. i hope you know what it means to me to have people like you around to cheer me up and give me your great advice and opinions that come from experience. Not able to imagine what I would do without the internet and this forum.
Thanks Brian for the good advice defining and Ipi fail which I will gladly discuss with my specialist. He is really on the side of the patient and will surely try to find the best solution for me.
Brian, you were right about being worried about me. The truth is that I am taking lots of benzodiazepines and hydromorphone at the moment. Then I thought again and asked my doctors, among them my shrink and they all found the idea to try medical marijuana a good one to replace or lower my usage of the other highly addicitve substances. Unfortunately this is not legal yer here but we know that authorities are getting more tolerant when they see there is a good medical reason for that.
thanks also to MathewR for his PM on the topic of Ipi & Dab without Mek. The fact that my onc knew about this showed to me again that i am being treated in the right place.
There is a tumor board next Wednesday to nail down the decision for this therapy and he is confident there won't be any troubles. Believe it or not, in Austria the Ipi will have to be paid by the hospital itself. As most hospitals are run by the public this is just a way of using tax money. Generally I have never had troubles with the insurance, the paperwork is mostly done by my oncologist, the insurance justs puts their stamp on which takes no more that a day usually.
I will see my doc on Thursday and hope to be able to schedule my first infusion already. After all I don't wanna let the beast grow for too long, still calculatimg a reserve for an Ipi caused explosiom as it has frequently been described.
How are your treatment going? Joanna, wish you all the best for finding the right plan for you too. Maybe Ipi and Dab could evntually become a first line option for people with high burden.
wishing everybody all the best,
Chris
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- July 27, 2014 at 8:43 am
Hi all,
this is what I call uplifting responses. i hope you know what it means to me to have people like you around to cheer me up and give me your great advice and opinions that come from experience. Not able to imagine what I would do without the internet and this forum.
Thanks Brian for the good advice defining and Ipi fail which I will gladly discuss with my specialist. He is really on the side of the patient and will surely try to find the best solution for me.
Brian, you were right about being worried about me. The truth is that I am taking lots of benzodiazepines and hydromorphone at the moment. Then I thought again and asked my doctors, among them my shrink and they all found the idea to try medical marijuana a good one to replace or lower my usage of the other highly addicitve substances. Unfortunately this is not legal yer here but we know that authorities are getting more tolerant when they see there is a good medical reason for that.
thanks also to MathewR for his PM on the topic of Ipi & Dab without Mek. The fact that my onc knew about this showed to me again that i am being treated in the right place.
There is a tumor board next Wednesday to nail down the decision for this therapy and he is confident there won't be any troubles. Believe it or not, in Austria the Ipi will have to be paid by the hospital itself. As most hospitals are run by the public this is just a way of using tax money. Generally I have never had troubles with the insurance, the paperwork is mostly done by my oncologist, the insurance justs puts their stamp on which takes no more that a day usually.
I will see my doc on Thursday and hope to be able to schedule my first infusion already. After all I don't wanna let the beast grow for too long, still calculatimg a reserve for an Ipi caused explosiom as it has frequently been described.
How are your treatment going? Joanna, wish you all the best for finding the right plan for you too. Maybe Ipi and Dab could evntually become a first line option for people with high burden.
wishing everybody all the best,
Chris
-
- July 27, 2014 at 8:43 am
Hi all,
this is what I call uplifting responses. i hope you know what it means to me to have people like you around to cheer me up and give me your great advice and opinions that come from experience. Not able to imagine what I would do without the internet and this forum.
Thanks Brian for the good advice defining and Ipi fail which I will gladly discuss with my specialist. He is really on the side of the patient and will surely try to find the best solution for me.
Brian, you were right about being worried about me. The truth is that I am taking lots of benzodiazepines and hydromorphone at the moment. Then I thought again and asked my doctors, among them my shrink and they all found the idea to try medical marijuana a good one to replace or lower my usage of the other highly addicitve substances. Unfortunately this is not legal yer here but we know that authorities are getting more tolerant when they see there is a good medical reason for that.
thanks also to MathewR for his PM on the topic of Ipi & Dab without Mek. The fact that my onc knew about this showed to me again that i am being treated in the right place.
There is a tumor board next Wednesday to nail down the decision for this therapy and he is confident there won't be any troubles. Believe it or not, in Austria the Ipi will have to be paid by the hospital itself. As most hospitals are run by the public this is just a way of using tax money. Generally I have never had troubles with the insurance, the paperwork is mostly done by my oncologist, the insurance justs puts their stamp on which takes no more that a day usually.
I will see my doc on Thursday and hope to be able to schedule my first infusion already. After all I don't wanna let the beast grow for too long, still calculatimg a reserve for an Ipi caused explosiom as it has frequently been described.
How are your treatment going? Joanna, wish you all the best for finding the right plan for you too. Maybe Ipi and Dab could evntually become a first line option for people with high burden.
wishing everybody all the best,
Chris
-
- July 26, 2014 at 8:55 pm
Chris,
I read one of your recent post on MIF which had me worried about your status. As always you seem to be very thorough and thoughtful in your approach and it sounds like you have a good plan. I hope ipi is the silver bullet for you also. The one thought/recommendation I might suggesti is to have a good plan in place with your docs to define what exactly a "ipi fail" is going to be. Even though ipi can have a delayed reaction, with your heavy tumor burden I would be pushing for a failure call if disease progresses even a little after starting. The other nice thing about that is if you can get a quick switch to the pd1 drug you would get somewhat of a combo effect which seems to be the best thing going right now. Best. Of luck Chris. I'm pulling for you!
Brian
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- July 27, 2014 at 12:22 am
Chris, sorry to hear about this development. It sounds like your doctor will be holding back the MEKi. It is my understanding that in a Phase I trial combing ipi and the combo, the MEKi patients developed colitis at a high rate-and that arm of the trial was suspended. I hope that you get good results from ipi plus the BRAFi.
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- July 27, 2014 at 12:22 am
Chris, sorry to hear about this development. It sounds like your doctor will be holding back the MEKi. It is my understanding that in a Phase I trial combing ipi and the combo, the MEKi patients developed colitis at a high rate-and that arm of the trial was suspended. I hope that you get good results from ipi plus the BRAFi.
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- July 27, 2014 at 12:22 am
Chris, sorry to hear about this development. It sounds like your doctor will be holding back the MEKi. It is my understanding that in a Phase I trial combing ipi and the combo, the MEKi patients developed colitis at a high rate-and that arm of the trial was suspended. I hope that you get good results from ipi plus the BRAFi.
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- August 11, 2014 at 6:41 am
Hi, just thought it would be interesting to share. My wife has been on the BRAF/MEK combi with initially some really positive response: improved blood values including LDH, quick regression of sub-skin tumors, energy levels back and most importantly positive scan results after 7-8 weeks: >30% reduction.
However, the 8wk blood test signalled increased LDH levels. We discussed this with our doctors and it could be a one-off (false positive) or could be a signal that the combi may stop working soon.
So we discussed that it's probably still worth continuing for 2 months: 2 blood tests and finally a PET CT scan. If there's any early signs of progression (or even in case of regression but with flattening out of LDH values above the benchmark levels), it may be worth switching to ipi (minimal of 2 treatments, if it works (10% of all cases) then the full 4) before moving to pembro. The latter has just been granted access to in Belgium to 4 centers (compassionate use) but only after ipi. And it is said to have much lower changes on serious side effects vs nivo.
In case both fail, then we can always move to the BRAF/MEK combo; for sure to dabrafenib, likely also to trametinib.
So we'll see what the next 2 months bring… Good luck everyone!
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- August 11, 2014 at 6:41 am
Hi, just thought it would be interesting to share. My wife has been on the BRAF/MEK combi with initially some really positive response: improved blood values including LDH, quick regression of sub-skin tumors, energy levels back and most importantly positive scan results after 7-8 weeks: >30% reduction.
However, the 8wk blood test signalled increased LDH levels. We discussed this with our doctors and it could be a one-off (false positive) or could be a signal that the combi may stop working soon.
So we discussed that it's probably still worth continuing for 2 months: 2 blood tests and finally a PET CT scan. If there's any early signs of progression (or even in case of regression but with flattening out of LDH values above the benchmark levels), it may be worth switching to ipi (minimal of 2 treatments, if it works (10% of all cases) then the full 4) before moving to pembro. The latter has just been granted access to in Belgium to 4 centers (compassionate use) but only after ipi. And it is said to have much lower changes on serious side effects vs nivo.
In case both fail, then we can always move to the BRAF/MEK combo; for sure to dabrafenib, likely also to trametinib.
So we'll see what the next 2 months bring… Good luck everyone!
-
- August 11, 2014 at 6:41 am
Hi, just thought it would be interesting to share. My wife has been on the BRAF/MEK combi with initially some really positive response: improved blood values including LDH, quick regression of sub-skin tumors, energy levels back and most importantly positive scan results after 7-8 weeks: >30% reduction.
However, the 8wk blood test signalled increased LDH levels. We discussed this with our doctors and it could be a one-off (false positive) or could be a signal that the combi may stop working soon.
So we discussed that it's probably still worth continuing for 2 months: 2 blood tests and finally a PET CT scan. If there's any early signs of progression (or even in case of regression but with flattening out of LDH values above the benchmark levels), it may be worth switching to ipi (minimal of 2 treatments, if it works (10% of all cases) then the full 4) before moving to pembro. The latter has just been granted access to in Belgium to 4 centers (compassionate use) but only after ipi. And it is said to have much lower changes on serious side effects vs nivo.
In case both fail, then we can always move to the BRAF/MEK combo; for sure to dabrafenib, likely also to trametinib.
So we'll see what the next 2 months bring… Good luck everyone!
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