› Forums › General Melanoma Community › Discouraging Scan
- This topic has 42 replies, 9 voices, and was last updated 9 years, 2 months ago by
Hukill.
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- September 14, 2016 at 4:30 pm
After 17 months on Mek combo, it has outsmarted the melanoma. Scans showed progression back into the bones. So I am being put on the Ipi/Nivo combo. Anyone care to share experiences with those drugs?
I know God’s got this and I keep thinking about a song that says Learning to Lean on Jesus. That is the only true source of strength.
Lisa
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- September 14, 2016 at 4:47 pm
Hey Lisa!
Darn that smart Melanoma! I hate it when it outsmarts our smart meds!
There's lots of info here about the Ipi/Nivo combo. It has been a good solution for many! Many people have posted their experiences on it here at MPIP. Just do a search and they will come up.
Finally, yes, God's got this, and you! This isn't dependent on treatment, stage or status. Although it might not be comfortable, it doesn't get any better when the creator of the universe is watching out for you!
Shalom,
Julie
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- September 14, 2016 at 4:47 pm
Hey Lisa!
Darn that smart Melanoma! I hate it when it outsmarts our smart meds!
There's lots of info here about the Ipi/Nivo combo. It has been a good solution for many! Many people have posted their experiences on it here at MPIP. Just do a search and they will come up.
Finally, yes, God's got this, and you! This isn't dependent on treatment, stage or status. Although it might not be comfortable, it doesn't get any better when the creator of the universe is watching out for you!
Shalom,
Julie
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- September 14, 2016 at 4:47 pm
Hey Lisa!
Darn that smart Melanoma! I hate it when it outsmarts our smart meds!
There's lots of info here about the Ipi/Nivo combo. It has been a good solution for many! Many people have posted their experiences on it here at MPIP. Just do a search and they will come up.
Finally, yes, God's got this, and you! This isn't dependent on treatment, stage or status. Although it might not be comfortable, it doesn't get any better when the creator of the universe is watching out for you!
Shalom,
Julie
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- September 14, 2016 at 5:00 pm
Lisa, you can search my prior posts. I've been on ipi/nivo for 8 months. I had an 18-month run on BRAF-MEK previously. Polymath and Ed Williams are 2 other posters that are on ipi/nivo.
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- September 14, 2016 at 6:05 pm
Hi Lisa, I am part of checkmate 067 trial by Bristol Myer Squibb, where 945 patients world wide have been assigned one of three possible arms of the study. Patients have been assigned Ipi monotherapy or Nivo monotherapy or the third possible arm of Ipi/Nivo together. The study is blinded so we don't know which of the arms we were assigned. I have made some asssumption based on side effects and scans. I had reduction of my lung mets at the first set of scans at 12 weeks, and I have assumed based on this and the low toxicity that I have encounter that I am getting Nivo for sure. I did have a lot of itching at the beginning which could mean I had Ipi as well but that would be a guess on my part. I have provided a link to a recent article on Immunotherapies in general and I would also suggest to check out Bubbles blog!!! Best Wishes!!!Ed http://www.uptodate.com/contents/immunotherapy-of-advanced-melanoma-with-immune-checkpoint-inhibition
I would check out the article about half way down for checkmate 067 data.
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- September 14, 2016 at 6:05 pm
Hi Lisa, I am part of checkmate 067 trial by Bristol Myer Squibb, where 945 patients world wide have been assigned one of three possible arms of the study. Patients have been assigned Ipi monotherapy or Nivo monotherapy or the third possible arm of Ipi/Nivo together. The study is blinded so we don't know which of the arms we were assigned. I have made some asssumption based on side effects and scans. I had reduction of my lung mets at the first set of scans at 12 weeks, and I have assumed based on this and the low toxicity that I have encounter that I am getting Nivo for sure. I did have a lot of itching at the beginning which could mean I had Ipi as well but that would be a guess on my part. I have provided a link to a recent article on Immunotherapies in general and I would also suggest to check out Bubbles blog!!! Best Wishes!!!Ed http://www.uptodate.com/contents/immunotherapy-of-advanced-melanoma-with-immune-checkpoint-inhibition
I would check out the article about half way down for checkmate 067 data.
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- September 14, 2016 at 6:05 pm
Hi Lisa, I am part of checkmate 067 trial by Bristol Myer Squibb, where 945 patients world wide have been assigned one of three possible arms of the study. Patients have been assigned Ipi monotherapy or Nivo monotherapy or the third possible arm of Ipi/Nivo together. The study is blinded so we don't know which of the arms we were assigned. I have made some asssumption based on side effects and scans. I had reduction of my lung mets at the first set of scans at 12 weeks, and I have assumed based on this and the low toxicity that I have encounter that I am getting Nivo for sure. I did have a lot of itching at the beginning which could mean I had Ipi as well but that would be a guess on my part. I have provided a link to a recent article on Immunotherapies in general and I would also suggest to check out Bubbles blog!!! Best Wishes!!!Ed http://www.uptodate.com/contents/immunotherapy-of-advanced-melanoma-with-immune-checkpoint-inhibition
I would check out the article about half way down for checkmate 067 data.
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- September 14, 2016 at 6:21 pm
Hi Lisa,
My mel must be a genius because it outsmarted my TAF/MEK in just 6 months. At that time, ipi/nivo was yet to be FDA approved so I went on ipi alone. I progressed on that as well, but then ipi/nivo became available. You are in a better position now as the side-effect profile appears to be less with the combo and response rates better. I started the combo back in late 2015, have had very few, and very manageable side-effects and remain on the follow-up nivo only part of regime getting infusions every two weeks. This is the first immunotherapy treatment I have had any response to. Go for it, and don't let others scare you about side-effects. You may, or may not experience them and just stay in contact with doctors/nurses when and if adverse reactions occur. Best to you in the battle.
Gary
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- September 14, 2016 at 6:21 pm
Hi Lisa,
My mel must be a genius because it outsmarted my TAF/MEK in just 6 months. At that time, ipi/nivo was yet to be FDA approved so I went on ipi alone. I progressed on that as well, but then ipi/nivo became available. You are in a better position now as the side-effect profile appears to be less with the combo and response rates better. I started the combo back in late 2015, have had very few, and very manageable side-effects and remain on the follow-up nivo only part of regime getting infusions every two weeks. This is the first immunotherapy treatment I have had any response to. Go for it, and don't let others scare you about side-effects. You may, or may not experience them and just stay in contact with doctors/nurses when and if adverse reactions occur. Best to you in the battle.
Gary
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- September 14, 2016 at 6:21 pm
Hi Lisa,
My mel must be a genius because it outsmarted my TAF/MEK in just 6 months. At that time, ipi/nivo was yet to be FDA approved so I went on ipi alone. I progressed on that as well, but then ipi/nivo became available. You are in a better position now as the side-effect profile appears to be less with the combo and response rates better. I started the combo back in late 2015, have had very few, and very manageable side-effects and remain on the follow-up nivo only part of regime getting infusions every two weeks. This is the first immunotherapy treatment I have had any response to. Go for it, and don't let others scare you about side-effects. You may, or may not experience them and just stay in contact with doctors/nurses when and if adverse reactions occur. Best to you in the battle.
Gary
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- September 14, 2016 at 6:56 pm
Dear rabbits68,
ipi/nivo sounds like a great plan (many folks keep it in their back pocket and try other stuff first – cause it's like the ass kicking, great results combo, so i'm sure you will see that for yourself)…
as for the side effects… I imagine any non life threathening side effect is better than melanoma… That's if they even occure… You will cross that bridge when/if you get to it…
You got this!
Love,
Patrisa
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- September 14, 2016 at 6:56 pm
Dear rabbits68,
ipi/nivo sounds like a great plan (many folks keep it in their back pocket and try other stuff first – cause it's like the ass kicking, great results combo, so i'm sure you will see that for yourself)…
as for the side effects… I imagine any non life threathening side effect is better than melanoma… That's if they even occure… You will cross that bridge when/if you get to it…
You got this!
Love,
Patrisa
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- September 14, 2016 at 6:56 pm
Dear rabbits68,
ipi/nivo sounds like a great plan (many folks keep it in their back pocket and try other stuff first – cause it's like the ass kicking, great results combo, so i'm sure you will see that for yourself)…
as for the side effects… I imagine any non life threathening side effect is better than melanoma… That's if they even occure… You will cross that bridge when/if you get to it…
You got this!
Love,
Patrisa
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- September 14, 2016 at 7:05 pm
Lisa,
Sending strength, prayers and positivity. I'm on the mek combo now (month 5). Ipi/Nivo is plan B.
Yvette
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- September 14, 2016 at 10:42 pm
Lisa, you might also want to take a look at Onclive, peer exchange series of videos featuring Dr. Keith Flaherty ,Georgina Long, Jeffrey Weber and Jason Luke. Here is the link, you might have to sign up but don't worry they don't send junk mail. Best Wishes!!!Ed http://www.onclive.com/peer-exchange/melanoma4-advanced-treatment/disease-burden-and-firstline-melanoma-treatment
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- September 14, 2016 at 10:42 pm
Lisa, you might also want to take a look at Onclive, peer exchange series of videos featuring Dr. Keith Flaherty ,Georgina Long, Jeffrey Weber and Jason Luke. Here is the link, you might have to sign up but don't worry they don't send junk mail. Best Wishes!!!Ed http://www.onclive.com/peer-exchange/melanoma4-advanced-treatment/disease-burden-and-firstline-melanoma-treatment
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- September 14, 2016 at 10:42 pm
Lisa, you might also want to take a look at Onclive, peer exchange series of videos featuring Dr. Keith Flaherty ,Georgina Long, Jeffrey Weber and Jason Luke. Here is the link, you might have to sign up but don't worry they don't send junk mail. Best Wishes!!!Ed http://www.onclive.com/peer-exchange/melanoma4-advanced-treatment/disease-burden-and-firstline-melanoma-treatment
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- September 15, 2016 at 11:40 am
Sorry for the progression, Lisa, but you can do this! Here's some pretty awesome data about the combo: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-checkmate-067-ipinivo-combo.html
There's lot more on the blog, just use the search bubble if you like. I wish you well! Celeste
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- September 15, 2016 at 11:40 am
Sorry for the progression, Lisa, but you can do this! Here's some pretty awesome data about the combo: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-checkmate-067-ipinivo-combo.html
There's lot more on the blog, just use the search bubble if you like. I wish you well! Celeste
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- September 15, 2016 at 11:40 am
Sorry for the progression, Lisa, but you can do this! Here's some pretty awesome data about the combo: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-checkmate-067-ipinivo-combo.html
There's lot more on the blog, just use the search bubble if you like. I wish you well! Celeste
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- September 15, 2016 at 4:22 pm
You can read my post titled "My Melanoma Story" which is about 7 threads down from this one. I had my 4th dose last friday and posted my adventure this far with these drugs. For me they are working and I have had very few side effects which I was able to handle my self, none serious. A scan at 8 weeks which was 6 weeks early had several tumors so far gone they couldn't say if they were completely gone or not. 3 were smaller and 2 slightly larger which I assume they continued to grow between my first scan and the time I started treatment but may be skrinking.
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- September 15, 2016 at 4:22 pm
You can read my post titled "My Melanoma Story" which is about 7 threads down from this one. I had my 4th dose last friday and posted my adventure this far with these drugs. For me they are working and I have had very few side effects which I was able to handle my self, none serious. A scan at 8 weeks which was 6 weeks early had several tumors so far gone they couldn't say if they were completely gone or not. 3 were smaller and 2 slightly larger which I assume they continued to grow between my first scan and the time I started treatment but may be skrinking.
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- September 15, 2016 at 4:22 pm
You can read my post titled "My Melanoma Story" which is about 7 threads down from this one. I had my 4th dose last friday and posted my adventure this far with these drugs. For me they are working and I have had very few side effects which I was able to handle my self, none serious. A scan at 8 weeks which was 6 weeks early had several tumors so far gone they couldn't say if they were completely gone or not. 3 were smaller and 2 slightly larger which I assume they continued to grow between my first scan and the time I started treatment but may be skrinking.
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