› Forums › General Melanoma Community › treatment decision time – Braf neg- treatment naive pembro or ipi/nivo
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Bubbles.
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- October 18, 2016 at 2:57 pm
Hello folks,
Crossed the stage IV bridge from watchful waiting . No previous treatment other than surgery.
Liver mets diffuse confirmed by MRI after CT scan.
Have been given two treatment choices
ipi 3mg for four doses every 3 weeks same time as nivo 1mg
then nivo 3mg every 2 weeks
OR pembrolizumab 2mg every 3 weeks.
LDH normal
Don't know pd1 expression but trying to find out as was in placebo wing of previous trial in that info is held on file- just not sure I can get to it.
IPI / nivo requires brain MRI and would probably start a week later than keytruda..
Have background eczema and arthritis that would probably flare with ipi..
Wrestling with the fact that neither may work but that ipi /nivo has best chance but worst side effects. Know I'm lucky to have the choices but really unsure. Do I flip a coin ?
Any advice or wise counsel very welcome- Would be easier if ipi dose was lower-
Thanks to all
- Replies
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- October 18, 2016 at 3:24 pm
That's a tough one…
I personally am an advocate for keytruda, since it worked so well for my father, but ipi/nivo has a higher response rate…
I think, given your low tumor burden, you could choose keytruda, if it doesn't work, you can switch to ipi/nivo… i haven't read anything about ipi/nivo followed by keytruda though…
My father has had no symptoms with keytruda and finds it really easy to do every three weeks…
Good luck!
Patrisa
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- October 18, 2016 at 3:24 pm
That's a tough one…
I personally am an advocate for keytruda, since it worked so well for my father, but ipi/nivo has a higher response rate…
I think, given your low tumor burden, you could choose keytruda, if it doesn't work, you can switch to ipi/nivo… i haven't read anything about ipi/nivo followed by keytruda though…
My father has had no symptoms with keytruda and finds it really easy to do every three weeks…
Good luck!
Patrisa
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- October 18, 2016 at 3:24 pm
That's a tough one…
I personally am an advocate for keytruda, since it worked so well for my father, but ipi/nivo has a higher response rate…
I think, given your low tumor burden, you could choose keytruda, if it doesn't work, you can switch to ipi/nivo… i haven't read anything about ipi/nivo followed by keytruda though…
My father has had no symptoms with keytruda and finds it really easy to do every three weeks…
Good luck!
Patrisa
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- October 19, 2016 at 5:21 pm
Just my experience…
I am an advocate for keytruda, I am in my 14th (tomorrow the next one) doses with very good results and no side effects
I went before thru five metastasis: lymph nodes (resection and radiotherapy), brain (resection and radiotherapy in the whole brain, left adrenal (resection) and metabolic traces subcutaneous that became nodes inside the right thigh close to the bone (radiotheraphy) and subcutaneous in my back (radiotheraphy). These last three in six months.
I began with keytruda on December 2015; almost at the same time I had the CTscan for the planning of the radiotherapy in my back. This scan (with just two doses of keytruda) showed the node in my back was almost half of the size of the previous scan.
After months of nodes and continuous treatments (including ipi before with no side effects but poor results); suddenly, with keytruda no more nodes and more clear images.
Good luck!
Willie
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- October 19, 2016 at 5:21 pm
Just my experience…
I am an advocate for keytruda, I am in my 14th (tomorrow the next one) doses with very good results and no side effects
I went before thru five metastasis: lymph nodes (resection and radiotherapy), brain (resection and radiotherapy in the whole brain, left adrenal (resection) and metabolic traces subcutaneous that became nodes inside the right thigh close to the bone (radiotheraphy) and subcutaneous in my back (radiotheraphy). These last three in six months.
I began with keytruda on December 2015; almost at the same time I had the CTscan for the planning of the radiotherapy in my back. This scan (with just two doses of keytruda) showed the node in my back was almost half of the size of the previous scan.
After months of nodes and continuous treatments (including ipi before with no side effects but poor results); suddenly, with keytruda no more nodes and more clear images.
Good luck!
Willie
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- October 19, 2016 at 5:21 pm
Just my experience…
I am an advocate for keytruda, I am in my 14th (tomorrow the next one) doses with very good results and no side effects
I went before thru five metastasis: lymph nodes (resection and radiotherapy), brain (resection and radiotherapy in the whole brain, left adrenal (resection) and metabolic traces subcutaneous that became nodes inside the right thigh close to the bone (radiotheraphy) and subcutaneous in my back (radiotheraphy). These last three in six months.
I began with keytruda on December 2015; almost at the same time I had the CTscan for the planning of the radiotherapy in my back. This scan (with just two doses of keytruda) showed the node in my back was almost half of the size of the previous scan.
After months of nodes and continuous treatments (including ipi before with no side effects but poor results); suddenly, with keytruda no more nodes and more clear images.
Good luck!
Willie
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- October 18, 2016 at 4:06 pm
I am on the ipi/nivo treatment. I do have the skin rash but it doesn't bother me except a spot or 2 will itch every now and then. I am through the first 4 doses of the combo and get my second dose of just opdivo this friday. I had my 14 week scan last friday and was able to pull the report from the VA yesterday. The report is a little confusing and I will see my dr friday but it looks like 5 of the 7 tumors in my lungs are gone or they used the term "micro-millimeter" and the other 2 are both under 2.5 mm in size. I have been very pleased so for with how my body has reacted to these drugs.
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- October 18, 2016 at 4:06 pm
I am on the ipi/nivo treatment. I do have the skin rash but it doesn't bother me except a spot or 2 will itch every now and then. I am through the first 4 doses of the combo and get my second dose of just opdivo this friday. I had my 14 week scan last friday and was able to pull the report from the VA yesterday. The report is a little confusing and I will see my dr friday but it looks like 5 of the 7 tumors in my lungs are gone or they used the term "micro-millimeter" and the other 2 are both under 2.5 mm in size. I have been very pleased so for with how my body has reacted to these drugs.
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- October 18, 2016 at 4:06 pm
I am on the ipi/nivo treatment. I do have the skin rash but it doesn't bother me except a spot or 2 will itch every now and then. I am through the first 4 doses of the combo and get my second dose of just opdivo this friday. I had my 14 week scan last friday and was able to pull the report from the VA yesterday. The report is a little confusing and I will see my dr friday but it looks like 5 of the 7 tumors in my lungs are gone or they used the term "micro-millimeter" and the other 2 are both under 2.5 mm in size. I have been very pleased so for with how my body has reacted to these drugs.
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- October 18, 2016 at 5:32 pm
Thank you too for the reply and info. Your results sound really promising. Liver seems to be difficult. but delighted to hear side effects not so bad for you… gives encouragement.. Still tossing up which direction to go and trying to pin down any info that might be the clincher…..Good luck !
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- October 18, 2016 at 5:32 pm
Thank you too for the reply and info. Your results sound really promising. Liver seems to be difficult. but delighted to hear side effects not so bad for you… gives encouragement.. Still tossing up which direction to go and trying to pin down any info that might be the clincher…..Good luck !
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- October 18, 2016 at 5:32 pm
Thank you too for the reply and info. Your results sound really promising. Liver seems to be difficult. but delighted to hear side effects not so bad for you… gives encouragement.. Still tossing up which direction to go and trying to pin down any info that might be the clincher…..Good luck !
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- October 18, 2016 at 5:55 pm
Hello Anon,
First thing that comes to mind is to be absolutely sure the spots on your liver are indeed, tumors, and not cysts which are very, very common and often mis-interpreted on radiology reports. If there's any doubt, a PET scan could prove it, or more watchful waiting till next scan. If there is no doubt, then from what I understand, the side-effect profile of the combo (you described the standard of care in this treatment) is actually lower than Yervoy (ipi) alone, which seems to cause the most problems with adverse reactions. And, the combo has a much higher response rate as well, so if you want to whack the mel with a big stick while its still small then the combo is for you. BTW, side-effects differ drastically for people. I have done it all, and am currently a year in the combo regime, with very few side-effects. Best in the battle.
Gary
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- October 18, 2016 at 6:46 pm
Thanks Gary,
Just discovered that I need a brain MRI for combo with no brain mets- now stressing over unusual 4 day headache about 14 days ago. No doubt re liver mets- first CT then fancy contrast enhanced MRI which showed more disease than initial CT 14 days later. Hadn't realised side effects for combo lower than ipi alone BTW. Have started with sweats and think they relate toliver probs and bloods point a finger that direction too. Another sleepless night coming up I think.
All the best and long may you continue withgood results.
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- October 18, 2016 at 7:48 pm
Sweats and sleepless nights sound like stress. Try not to let it get the best of you. Brain MRI's in the tube are not fun. Take the anti-anxiety drug they offer, or try my coping mechanism which is to keep your eyes closed the entire time, and think about the reason you are there. Life, love of friends & family, career, all the things you want to live for. Think happy thoughts and it will be over before you know it.
Gary
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- October 18, 2016 at 7:48 pm
Sweats and sleepless nights sound like stress. Try not to let it get the best of you. Brain MRI's in the tube are not fun. Take the anti-anxiety drug they offer, or try my coping mechanism which is to keep your eyes closed the entire time, and think about the reason you are there. Life, love of friends & family, career, all the things you want to live for. Think happy thoughts and it will be over before you know it.
Gary
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- October 18, 2016 at 9:43 pm
Super duper headache was in hospital after surgery and on loads of drugs. Just a bit spooked at thge moment- normal service to be resumed shortly… we hope….its just been ct wait mri wait treatment options and scan results and now they want another then another wait before treatment starts..so frustrating…
Thanks again
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- October 18, 2016 at 9:43 pm
Super duper headache was in hospital after surgery and on loads of drugs. Just a bit spooked at thge moment- normal service to be resumed shortly… we hope….its just been ct wait mri wait treatment options and scan results and now they want another then another wait before treatment starts..so frustrating…
Thanks again
-
- October 18, 2016 at 9:43 pm
Super duper headache was in hospital after surgery and on loads of drugs. Just a bit spooked at thge moment- normal service to be resumed shortly… we hope….its just been ct wait mri wait treatment options and scan results and now they want another then another wait before treatment starts..so frustrating…
Thanks again
-
- October 18, 2016 at 7:48 pm
Sweats and sleepless nights sound like stress. Try not to let it get the best of you. Brain MRI's in the tube are not fun. Take the anti-anxiety drug they offer, or try my coping mechanism which is to keep your eyes closed the entire time, and think about the reason you are there. Life, love of friends & family, career, all the things you want to live for. Think happy thoughts and it will be over before you know it.
Gary
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- October 18, 2016 at 6:46 pm
Thanks Gary,
Just discovered that I need a brain MRI for combo with no brain mets- now stressing over unusual 4 day headache about 14 days ago. No doubt re liver mets- first CT then fancy contrast enhanced MRI which showed more disease than initial CT 14 days later. Hadn't realised side effects for combo lower than ipi alone BTW. Have started with sweats and think they relate toliver probs and bloods point a finger that direction too. Another sleepless night coming up I think.
All the best and long may you continue withgood results.
-
- October 18, 2016 at 6:46 pm
Thanks Gary,
Just discovered that I need a brain MRI for combo with no brain mets- now stressing over unusual 4 day headache about 14 days ago. No doubt re liver mets- first CT then fancy contrast enhanced MRI which showed more disease than initial CT 14 days later. Hadn't realised side effects for combo lower than ipi alone BTW. Have started with sweats and think they relate toliver probs and bloods point a finger that direction too. Another sleepless night coming up I think.
All the best and long may you continue withgood results.
-
- October 18, 2016 at 5:55 pm
Hello Anon,
First thing that comes to mind is to be absolutely sure the spots on your liver are indeed, tumors, and not cysts which are very, very common and often mis-interpreted on radiology reports. If there's any doubt, a PET scan could prove it, or more watchful waiting till next scan. If there is no doubt, then from what I understand, the side-effect profile of the combo (you described the standard of care in this treatment) is actually lower than Yervoy (ipi) alone, which seems to cause the most problems with adverse reactions. And, the combo has a much higher response rate as well, so if you want to whack the mel with a big stick while its still small then the combo is for you. BTW, side-effects differ drastically for people. I have done it all, and am currently a year in the combo regime, with very few side-effects. Best in the battle.
Gary
-
- October 18, 2016 at 5:55 pm
Hello Anon,
First thing that comes to mind is to be absolutely sure the spots on your liver are indeed, tumors, and not cysts which are very, very common and often mis-interpreted on radiology reports. If there's any doubt, a PET scan could prove it, or more watchful waiting till next scan. If there is no doubt, then from what I understand, the side-effect profile of the combo (you described the standard of care in this treatment) is actually lower than Yervoy (ipi) alone, which seems to cause the most problems with adverse reactions. And, the combo has a much higher response rate as well, so if you want to whack the mel with a big stick while its still small then the combo is for you. BTW, side-effects differ drastically for people. I have done it all, and am currently a year in the combo regime, with very few side-effects. Best in the battle.
Gary
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- October 18, 2016 at 6:45 pm
Hi Anon, I would want the brain scan either way to make sure that the brain is clear. The pd-1 issue isn't a big deal since both Pd-1 + and – both respond to the Pd-1 monotherapy or the combination!!!Best Wishes!!!Ed
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- October 18, 2016 at 6:45 pm
Hi Anon, I would want the brain scan either way to make sure that the brain is clear. The pd-1 issue isn't a big deal since both Pd-1 + and – both respond to the Pd-1 monotherapy or the combination!!!Best Wishes!!!Ed
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- October 18, 2016 at 6:45 pm
Hi Anon, I would want the brain scan either way to make sure that the brain is clear. The pd-1 issue isn't a big deal since both Pd-1 + and – both respond to the Pd-1 monotherapy or the combination!!!Best Wishes!!!Ed
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- October 19, 2016 at 1:05 pm
Choosing a treatment path is personal and can be confusing. I agree you needed a brain MRI no matter what. And both the anti-PD1 products (nivo/Opdivo or pembro/Keytruda) have proven to be effective in the brain, esp when given rapidly after SRS to brain mets (should a patient have them). Alone, anti-PD1 yields a 40% response rate. Ipi alone (I know you are not thinking of this, but…) provides about a 15% response rate. It does come with more immune related side effects than anti-PD1 and is the bad boy in that regard when combined with nivo. Probably stuff you already know. Here is a discussion two melanoma experts had about melanoma and choosing treatment that you might find helpful even though it is a bit older and I realize the BRAF info is not pertinent to your situation: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
I wish you well. Celeste
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- October 19, 2016 at 1:05 pm
Choosing a treatment path is personal and can be confusing. I agree you needed a brain MRI no matter what. And both the anti-PD1 products (nivo/Opdivo or pembro/Keytruda) have proven to be effective in the brain, esp when given rapidly after SRS to brain mets (should a patient have them). Alone, anti-PD1 yields a 40% response rate. Ipi alone (I know you are not thinking of this, but…) provides about a 15% response rate. It does come with more immune related side effects than anti-PD1 and is the bad boy in that regard when combined with nivo. Probably stuff you already know. Here is a discussion two melanoma experts had about melanoma and choosing treatment that you might find helpful even though it is a bit older and I realize the BRAF info is not pertinent to your situation: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
I wish you well. Celeste
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- October 19, 2016 at 4:38 pm
Thanks Celeste.
Have provisionally opted for the big guns as I can trade down – but am still mulling it all over in my head. Will listen to the clip as these guys know so much.
Still feeling nauseous but could be antibiotics/ shock and emotional upset or liver issues or a bit of all three.
I really don't know. Anyway thank you for the vlink andfor taking the time to answer so many queries. You are a star.
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- October 19, 2016 at 4:38 pm
Thanks Celeste.
Have provisionally opted for the big guns as I can trade down – but am still mulling it all over in my head. Will listen to the clip as these guys know so much.
Still feeling nauseous but could be antibiotics/ shock and emotional upset or liver issues or a bit of all three.
I really don't know. Anyway thank you for the vlink andfor taking the time to answer so many queries. You are a star.
-
- October 19, 2016 at 4:38 pm
Thanks Celeste.
Have provisionally opted for the big guns as I can trade down – but am still mulling it all over in my head. Will listen to the clip as these guys know so much.
Still feeling nauseous but could be antibiotics/ shock and emotional upset or liver issues or a bit of all three.
I really don't know. Anyway thank you for the vlink andfor taking the time to answer so many queries. You are a star.
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- October 19, 2016 at 5:27 pm
You are very kind…but… Here's what I think is some super cool info!!! Even if you have to stop the ipi/nivo combo…for whatever reason…..the OS for those who had to stop treatment was very similar to those who continued therapy at 18 months!!! Here's the report: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html
I wish you well. c
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- October 19, 2016 at 5:27 pm
You are very kind…but… Here's what I think is some super cool info!!! Even if you have to stop the ipi/nivo combo…for whatever reason…..the OS for those who had to stop treatment was very similar to those who continued therapy at 18 months!!! Here's the report: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html
I wish you well. c
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- October 19, 2016 at 5:27 pm
You are very kind…but… Here's what I think is some super cool info!!! Even if you have to stop the ipi/nivo combo…for whatever reason…..the OS for those who had to stop treatment was very similar to those who continued therapy at 18 months!!! Here's the report: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html
I wish you well. c
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- October 19, 2016 at 1:05 pm
Choosing a treatment path is personal and can be confusing. I agree you needed a brain MRI no matter what. And both the anti-PD1 products (nivo/Opdivo or pembro/Keytruda) have proven to be effective in the brain, esp when given rapidly after SRS to brain mets (should a patient have them). Alone, anti-PD1 yields a 40% response rate. Ipi alone (I know you are not thinking of this, but…) provides about a 15% response rate. It does come with more immune related side effects than anti-PD1 and is the bad boy in that regard when combined with nivo. Probably stuff you already know. Here is a discussion two melanoma experts had about melanoma and choosing treatment that you might find helpful even though it is a bit older and I realize the BRAF info is not pertinent to your situation: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
I wish you well. Celeste
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