› Forums › General Melanoma Community › Treatment options – Looking for advice on making a decision
- This topic has 42 replies, 8 voices, and was last updated 7 years, 2 months ago by MikeW.
- Post
-
- February 3, 2017 at 7:28 pm
I'm newly diagnosed Stage 4 Melanoma as of mid January '17. I'm interested to hear how folks have navigated their way through treatment options that are a trade off between toxicity risk and higher outsomes versus less toxicity and good but not as high of an outcome. Other than melanoma, I'm in really good health, the tumors are in my lungs and haven't traveled yet.
See below for the options. Really appreciate the advice.
Recommended Approach 1 – Combination treatment
Drug 1 – Yervoy (same as Ipilimumab)Drug 2 – Opdivo (same as Nivolumba)
% Toxicity (55%)
Mortality 1%
Severe 10%
Other 40%Response Rate
57%Combination Treatment Abstract – Yervoy and Opdivo
Recommended Approach 2
Drug 1 – Keytruda (Pembrolizumab)
% Toxicity
Mortality 1%
Severe 10%Response Rate Alone
40%Drug 2 – clinical trial (phase 3 with placebo for 50% of group)
Response Rate with trial ~ 50%.
- Replies
-
-
- February 3, 2017 at 8:09 pm
In my opinion, approach 1 is the best choice and it isn't even close. I was faced with that decision two months ago. I opted for the combo treatment after my research. The side effects got me and I was/am forced to stop treatment with those drugs. Even though the side effects happened I would choose the combo again if I could. Melanoma is a slippery and relentless beast. I would hit it with the best option every time.
Also, based on your two options, it appears that a placebo is possible for you in the clinical trial. That is a deal breaker for me. I would hate to have progression with the mel because I was one of the unlucky ones to get a placebo. I couldn't live with that. Maybe it is just me or it is because I have progressed over the past couple years.
Best of luck with your decision,
Brad
-
- February 3, 2017 at 8:09 pm
In my opinion, approach 1 is the best choice and it isn't even close. I was faced with that decision two months ago. I opted for the combo treatment after my research. The side effects got me and I was/am forced to stop treatment with those drugs. Even though the side effects happened I would choose the combo again if I could. Melanoma is a slippery and relentless beast. I would hit it with the best option every time.
Also, based on your two options, it appears that a placebo is possible for you in the clinical trial. That is a deal breaker for me. I would hate to have progression with the mel because I was one of the unlucky ones to get a placebo. I couldn't live with that. Maybe it is just me or it is because I have progressed over the past couple years.
Best of luck with your decision,
Brad
-
- February 3, 2017 at 8:09 pm
In my opinion, approach 1 is the best choice and it isn't even close. I was faced with that decision two months ago. I opted for the combo treatment after my research. The side effects got me and I was/am forced to stop treatment with those drugs. Even though the side effects happened I would choose the combo again if I could. Melanoma is a slippery and relentless beast. I would hit it with the best option every time.
Also, based on your two options, it appears that a placebo is possible for you in the clinical trial. That is a deal breaker for me. I would hate to have progression with the mel because I was one of the unlucky ones to get a placebo. I couldn't live with that. Maybe it is just me or it is because I have progressed over the past couple years.
Best of luck with your decision,
Brad
-
- February 3, 2017 at 8:45 pm
Sorry you are having to evaluate these choices. But…here are some articles that may help inform your decision:
Survival outcome of ipi/nivo trial: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html
A nice breakdown of info on Pembrolizumab (Keytruda) outcomes out of ASCO last year by Dr Daud: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html
I'll post one other nice general review below…..
-
- February 3, 2017 at 8:48 pm
This post contains a link to a PDF file presentation that covers melanoma and its treatments generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html
I wish you well. Celeste
-
- February 3, 2017 at 8:48 pm
This post contains a link to a PDF file presentation that covers melanoma and its treatments generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html
I wish you well. Celeste
-
- February 3, 2017 at 8:48 pm
This post contains a link to a PDF file presentation that covers melanoma and its treatments generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/if-you-like-graphs-cool-pics-and-fairly.html
I wish you well. Celeste
-
- February 3, 2017 at 8:45 pm
Sorry you are having to evaluate these choices. But…here are some articles that may help inform your decision:
Survival outcome of ipi/nivo trial: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html
A nice breakdown of info on Pembrolizumab (Keytruda) outcomes out of ASCO last year by Dr Daud: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html
I'll post one other nice general review below…..
-
- February 3, 2017 at 8:45 pm
Sorry you are having to evaluate these choices. But…here are some articles that may help inform your decision:
Survival outcome of ipi/nivo trial: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html
A nice breakdown of info on Pembrolizumab (Keytruda) outcomes out of ASCO last year by Dr Daud: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html
I'll post one other nice general review below…..
-
- February 3, 2017 at 9:10 pm
Another vote for the combo. I think the 57% response rate you list for the combo is low. If you are really doing risk vs. reward analysis I'd do a little more research into those figures to make sure you are comparing apples to apples.
-
- February 3, 2017 at 11:16 pm
Hi M Wokosin, just to add a little bit to the conversation, read articles, watch videos on Melanoma, and ask question to as many doctors that you can before making a decision. Spend some time on Bubbles blog, full of great stuff and links to the most current data plus if you are into making dresses!!!! youtube has most of the current leaders in the field when they get together and do educational presentations. Onclive is always pretty good. Here is two videos to get you started from one of the leaders in the Melanoma world. The presentations are about one year apart and the contrast and advancements in treatment options between 2015 and 2016 is crazzy. The field of Immunoncology is exploding with new trials and combinations. Best Wishes!!!Ed https://www.youtube.com/watch?v=f15oPSvuK4o https://www.youtube.com/watch?v=FtQJQhQE3dQ
-
- February 3, 2017 at 11:16 pm
Hi M Wokosin, just to add a little bit to the conversation, read articles, watch videos on Melanoma, and ask question to as many doctors that you can before making a decision. Spend some time on Bubbles blog, full of great stuff and links to the most current data plus if you are into making dresses!!!! youtube has most of the current leaders in the field when they get together and do educational presentations. Onclive is always pretty good. Here is two videos to get you started from one of the leaders in the Melanoma world. The presentations are about one year apart and the contrast and advancements in treatment options between 2015 and 2016 is crazzy. The field of Immunoncology is exploding with new trials and combinations. Best Wishes!!!Ed https://www.youtube.com/watch?v=f15oPSvuK4o https://www.youtube.com/watch?v=FtQJQhQE3dQ
-
- February 3, 2017 at 11:16 pm
Hi M Wokosin, just to add a little bit to the conversation, read articles, watch videos on Melanoma, and ask question to as many doctors that you can before making a decision. Spend some time on Bubbles blog, full of great stuff and links to the most current data plus if you are into making dresses!!!! youtube has most of the current leaders in the field when they get together and do educational presentations. Onclive is always pretty good. Here is two videos to get you started from one of the leaders in the Melanoma world. The presentations are about one year apart and the contrast and advancements in treatment options between 2015 and 2016 is crazzy. The field of Immunoncology is exploding with new trials and combinations. Best Wishes!!!Ed https://www.youtube.com/watch?v=f15oPSvuK4o https://www.youtube.com/watch?v=FtQJQhQE3dQ
-
- February 3, 2017 at 11:19 pm
I wanted this video to be the first one in the above post!!!! https://www.youtube.com/watch?v=10nUgi5R9UE
-
- February 3, 2017 at 11:19 pm
I wanted this video to be the first one in the above post!!!! https://www.youtube.com/watch?v=10nUgi5R9UE
-
- February 3, 2017 at 11:19 pm
I wanted this video to be the first one in the above post!!!! https://www.youtube.com/watch?v=10nUgi5R9UE
-
- February 3, 2017 at 11:52 pm
I'll chime in and say I'm another on board with Ipi/Nivo combo. Longer post about why I chose it myself in the post below titled Mono vs Combo.
All the best,
-
- February 3, 2017 at 11:52 pm
I'll chime in and say I'm another on board with Ipi/Nivo combo. Longer post about why I chose it myself in the post below titled Mono vs Combo.
All the best,
-
- February 3, 2017 at 11:52 pm
I'll chime in and say I'm another on board with Ipi/Nivo combo. Longer post about why I chose it myself in the post below titled Mono vs Combo.
All the best,
-
- February 4, 2017 at 2:00 am
Hi-
We have similar situations. I have mets only to my lungs at this point. I progressed to stage 4 in Nov. '16. I started the ipi/nivo combo in December. I only got through one dose before my onc nixed further doses due to toxicities (fried my thyroid and liver enzymes elevated). I am now on just Nivo if I continue to tolerate it. The good news is- I already have had more than 50% reduction in the size of my two remaining lung mets! That was from only one dose of the combo becuase my last CT scan was before the first nivo dose.
So I obviously am giving my endorsement to the ipi/nivo. I will miss my thyroid but I won't miss Mel!!
Good luck, let us know what you decide.
Peggy
-
- February 4, 2017 at 2:00 am
Hi-
We have similar situations. I have mets only to my lungs at this point. I progressed to stage 4 in Nov. '16. I started the ipi/nivo combo in December. I only got through one dose before my onc nixed further doses due to toxicities (fried my thyroid and liver enzymes elevated). I am now on just Nivo if I continue to tolerate it. The good news is- I already have had more than 50% reduction in the size of my two remaining lung mets! That was from only one dose of the combo becuase my last CT scan was before the first nivo dose.
So I obviously am giving my endorsement to the ipi/nivo. I will miss my thyroid but I won't miss Mel!!
Good luck, let us know what you decide.
Peggy
-
- February 4, 2017 at 2:00 am
Hi-
We have similar situations. I have mets only to my lungs at this point. I progressed to stage 4 in Nov. '16. I started the ipi/nivo combo in December. I only got through one dose before my onc nixed further doses due to toxicities (fried my thyroid and liver enzymes elevated). I am now on just Nivo if I continue to tolerate it. The good news is- I already have had more than 50% reduction in the size of my two remaining lung mets! That was from only one dose of the combo becuase my last CT scan was before the first nivo dose.
So I obviously am giving my endorsement to the ipi/nivo. I will miss my thyroid but I won't miss Mel!!
Good luck, let us know what you decide.
Peggy
-
- February 6, 2017 at 1:23 pm
The combo was my choice without thought, I even asked for it when I first met my dr before he gave me any options. After 5 combos and 6 nivo alone I can say I made the right choice for me.
-
- You must be logged in to reply to this topic.