› Forums › Mucosal Melanoma Community › To Nivo or Not to Nivo, That is the Question …
- This topic has 15 replies, 4 voices, and was last updated 7 years, 11 months ago by
JohnA.
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- April 9, 2016 at 3:26 am
Hi friends,
So my 3-week break from blood draws / cancer center visits was up today, as I wind down from a prolonged bout with pneuminitis after my 4th & final combo treatment a couple months ago. Scans on Feb. 18 showed no new brain mets or new tumors anywhere of any kind, the first time in 9 months since my diagnosis that there was no new activity. There is a lingering tumor at the original site that has gone from 9 ml to 6 ml to 3 ml at the last scan, but that's it. Next set of scans is scheduled for April 19.
My doctor and I discussed whether or not I should re-start the immunotherapy now with the Nivo maintenance treatment. If there's any new tumors anywhere on the 19th, we will for sure, but if it's a clean scan/MRI again, it's not clear what the next step should be. Apparently there are no studies or trials done that confirm Nivo is needed for maintenance, and from these melanoma boards it sounds like oncologists are making their own calls based on intuition and anecedotal patient experience rather than any clearcut scientific evidence.
I am juggling a few concerns here:
1) the toll so far on my body from the side effects, as my onc says I have been hit particularly hard and we have yet to know the cumulative effect; so far adverse effects have included retina detachment, liver inflammation, pneuminitis, skin rash, significant hair thinning, and eyebrows & eyelashes that are all white (yesterday I was referred to as an albino…)
2) the long-term effect on the immune system of prolonged immunotherapy treatments as pointed out in a recent conversation started by Ashley here:
3) the above weighed against the aggressive nature of mucosal melanoma that has already spread to brain
I would love to hear from others advice, thoughts, further doctor comments, etc.
Love the "think tank" nature of this patient board!!
Peace & best,
Maria
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- April 9, 2016 at 1:25 pm
Fo the most part, Maria….your ultimate answer will be a personal one. Here are the only points I can offer.
Ipi is the bad boy of the combo in regard to side effects. (Though, of course, there are many adverse events either anti-PD1 product alone can create!) But, there is a pretty good chance that you can tolerate nivo alone without the difficulties you experienced while on the combo. (There are many articles on my blog about folks who had significant side effects on ipi, but who later managed to attain a response to nivo and without a repeat of the problems they had experienced before with ipi….not exactly your circumstance but…..)
In this webinar…two melanoma experts discuss combo treatments for melanoma….toward the bottom….ipi and nivo….and responders who maintained a continued response after having to stop therapy due to side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
This post offers links to several articles/reports on the ipi/nivo combo…also addressing side effects and durability of response (though the combo is relatively new and long term data isn't fully attained just yet): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/ipinivo-combo-immunotherapy-hitting-big.html
Then….there is the issue of whether you even NEED more treatment at this point…
Not easy decisions to make. I wish you well with whtever you decide. Celeste
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- April 9, 2016 at 4:08 pm
Celeste, thank you once again for your generosity of time and thought. Us newbies are very lucky to have you right there for us with your very well-informed responses. Just what the "doctor" ordered!
I couldn't get to the Weber video, but your synopsis is full of relevant info, including this:
<<Trials are looking at whether ipi should be administered in the current 4 dose – then stop, protocol…or are maintenance doses helpful? Weber feels 4 doses are sufficient, but trial results are still pending.>>
And here is my line of thinking: there isn't time to wait for trial results before a decision has to be made, but logically, if the scans show no progression of disease, and there's an unknown cumulative effect of the combo treatment, then why not wait before rushing into more immunotherapy? Why not just settle down with my "new" immune system and try to get back to some type of normalcy (read: predictability)?
Also, I wonder if there's a way for us as patients, who are living through these exciting but unpredictable breakthroughs in cancer treatment, to organize and present our own "wish list" of clinical trials to the scientists who are leading immunotherapy research? I know the melanoma specialists collaborate together, but how about the melanoma patients?
We should have equal access to whatever data is being collected so we can educate ourselves and participate as full partners and decision-makers in our own care. That's impossible to do when the data has gate keepers…on the other hand, those gates may be closed for a reason?
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- April 9, 2016 at 4:08 pm
Celeste, thank you once again for your generosity of time and thought. Us newbies are very lucky to have you right there for us with your very well-informed responses. Just what the "doctor" ordered!
I couldn't get to the Weber video, but your synopsis is full of relevant info, including this:
<<Trials are looking at whether ipi should be administered in the current 4 dose – then stop, protocol…or are maintenance doses helpful? Weber feels 4 doses are sufficient, but trial results are still pending.>>
And here is my line of thinking: there isn't time to wait for trial results before a decision has to be made, but logically, if the scans show no progression of disease, and there's an unknown cumulative effect of the combo treatment, then why not wait before rushing into more immunotherapy? Why not just settle down with my "new" immune system and try to get back to some type of normalcy (read: predictability)?
Also, I wonder if there's a way for us as patients, who are living through these exciting but unpredictable breakthroughs in cancer treatment, to organize and present our own "wish list" of clinical trials to the scientists who are leading immunotherapy research? I know the melanoma specialists collaborate together, but how about the melanoma patients?
We should have equal access to whatever data is being collected so we can educate ourselves and participate as full partners and decision-makers in our own care. That's impossible to do when the data has gate keepers…on the other hand, those gates may be closed for a reason?
-
- April 9, 2016 at 4:08 pm
Celeste, thank you once again for your generosity of time and thought. Us newbies are very lucky to have you right there for us with your very well-informed responses. Just what the "doctor" ordered!
I couldn't get to the Weber video, but your synopsis is full of relevant info, including this:
<<Trials are looking at whether ipi should be administered in the current 4 dose – then stop, protocol…or are maintenance doses helpful? Weber feels 4 doses are sufficient, but trial results are still pending.>>
And here is my line of thinking: there isn't time to wait for trial results before a decision has to be made, but logically, if the scans show no progression of disease, and there's an unknown cumulative effect of the combo treatment, then why not wait before rushing into more immunotherapy? Why not just settle down with my "new" immune system and try to get back to some type of normalcy (read: predictability)?
Also, I wonder if there's a way for us as patients, who are living through these exciting but unpredictable breakthroughs in cancer treatment, to organize and present our own "wish list" of clinical trials to the scientists who are leading immunotherapy research? I know the melanoma specialists collaborate together, but how about the melanoma patients?
We should have equal access to whatever data is being collected so we can educate ourselves and participate as full partners and decision-makers in our own care. That's impossible to do when the data has gate keepers…on the other hand, those gates may be closed for a reason?
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- April 9, 2016 at 1:25 pm
Fo the most part, Maria….your ultimate answer will be a personal one. Here are the only points I can offer.
Ipi is the bad boy of the combo in regard to side effects. (Though, of course, there are many adverse events either anti-PD1 product alone can create!) But, there is a pretty good chance that you can tolerate nivo alone without the difficulties you experienced while on the combo. (There are many articles on my blog about folks who had significant side effects on ipi, but who later managed to attain a response to nivo and without a repeat of the problems they had experienced before with ipi….not exactly your circumstance but…..)
In this webinar…two melanoma experts discuss combo treatments for melanoma….toward the bottom….ipi and nivo….and responders who maintained a continued response after having to stop therapy due to side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
This post offers links to several articles/reports on the ipi/nivo combo…also addressing side effects and durability of response (though the combo is relatively new and long term data isn't fully attained just yet): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/ipinivo-combo-immunotherapy-hitting-big.html
Then….there is the issue of whether you even NEED more treatment at this point…
Not easy decisions to make. I wish you well with whtever you decide. Celeste
-
- April 9, 2016 at 1:25 pm
Fo the most part, Maria….your ultimate answer will be a personal one. Here are the only points I can offer.
Ipi is the bad boy of the combo in regard to side effects. (Though, of course, there are many adverse events either anti-PD1 product alone can create!) But, there is a pretty good chance that you can tolerate nivo alone without the difficulties you experienced while on the combo. (There are many articles on my blog about folks who had significant side effects on ipi, but who later managed to attain a response to nivo and without a repeat of the problems they had experienced before with ipi….not exactly your circumstance but…..)
In this webinar…two melanoma experts discuss combo treatments for melanoma….toward the bottom….ipi and nivo….and responders who maintained a continued response after having to stop therapy due to side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
This post offers links to several articles/reports on the ipi/nivo combo…also addressing side effects and durability of response (though the combo is relatively new and long term data isn't fully attained just yet): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/ipinivo-combo-immunotherapy-hitting-big.html
Then….there is the issue of whether you even NEED more treatment at this point…
Not easy decisions to make. I wish you well with whtever you decide. Celeste
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- April 9, 2016 at 7:00 pm
As noted, a personal decision. I will note that, following prednisone to treat diarrhea after my 3rd combo infusion (started at 60mg), I tapered down to 10mg and then had my first infusion of nivo. My onc's team favored waiting but I pushed to start on the theory that ipi was the culprit based on prior experience. I immediately relapsed with the diarrhea and am back up to 60mg. I also have no regrets since my top priority is treating the melanoma. Treating side effects is secondary for me, though admittedly I've been very lucky to date with side effects across multiple treatments. I view dealing with the cumulative effects, if any, over time as a so-called "high class" problem.
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- April 10, 2016 at 1:34 am
Thank you for your thoughts, Mat, and I hear you re: side effects being secondary to the monster that is melanoma….that is what my husband believes too and thinks I'm risking things not wanting to rush into the nivo maintenance. I would just like confirmation from the studies that nivo is necessary…
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- April 10, 2016 at 1:34 am
Thank you for your thoughts, Mat, and I hear you re: side effects being secondary to the monster that is melanoma….that is what my husband believes too and thinks I'm risking things not wanting to rush into the nivo maintenance. I would just like confirmation from the studies that nivo is necessary…
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- April 10, 2016 at 1:34 am
Thank you for your thoughts, Mat, and I hear you re: side effects being secondary to the monster that is melanoma….that is what my husband believes too and thinks I'm risking things not wanting to rush into the nivo maintenance. I would just like confirmation from the studies that nivo is necessary…
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- April 9, 2016 at 7:00 pm
As noted, a personal decision. I will note that, following prednisone to treat diarrhea after my 3rd combo infusion (started at 60mg), I tapered down to 10mg and then had my first infusion of nivo. My onc's team favored waiting but I pushed to start on the theory that ipi was the culprit based on prior experience. I immediately relapsed with the diarrhea and am back up to 60mg. I also have no regrets since my top priority is treating the melanoma. Treating side effects is secondary for me, though admittedly I've been very lucky to date with side effects across multiple treatments. I view dealing with the cumulative effects, if any, over time as a so-called "high class" problem.
-
- April 9, 2016 at 7:00 pm
As noted, a personal decision. I will note that, following prednisone to treat diarrhea after my 3rd combo infusion (started at 60mg), I tapered down to 10mg and then had my first infusion of nivo. My onc's team favored waiting but I pushed to start on the theory that ipi was the culprit based on prior experience. I immediately relapsed with the diarrhea and am back up to 60mg. I also have no regrets since my top priority is treating the melanoma. Treating side effects is secondary for me, though admittedly I've been very lucky to date with side effects across multiple treatments. I view dealing with the cumulative effects, if any, over time as a so-called "high class" problem.
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- May 6, 2016 at 3:21 pm
Maria –
I'm following your story and updates with great interest. My wife (diagnosed mucosal melanoma 2014, now metastatic) just started the combo this week and we're seeing the two camps now that you've described" some that say to try and make it through 4 cycles of combo followed by 2 yrs of nivo VS if you see a great response, then hold off on giving more drugs.
In our conversations, Dr. Chapman at Sloan suggests that there isn't any evidence that people do better on 4 cycles, the more relevant question seems to be whether you're responding or not.
I'd love to hear how you're doing and what you decided, it's very helpful to have this community. We may be making the same decisions in a few weeks or months!
Thanks
John
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- May 6, 2016 at 3:21 pm
Maria –
I'm following your story and updates with great interest. My wife (diagnosed mucosal melanoma 2014, now metastatic) just started the combo this week and we're seeing the two camps now that you've described" some that say to try and make it through 4 cycles of combo followed by 2 yrs of nivo VS if you see a great response, then hold off on giving more drugs.
In our conversations, Dr. Chapman at Sloan suggests that there isn't any evidence that people do better on 4 cycles, the more relevant question seems to be whether you're responding or not.
I'd love to hear how you're doing and what you decided, it's very helpful to have this community. We may be making the same decisions in a few weeks or months!
Thanks
John
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- May 6, 2016 at 3:21 pm
Maria –
I'm following your story and updates with great interest. My wife (diagnosed mucosal melanoma 2014, now metastatic) just started the combo this week and we're seeing the two camps now that you've described" some that say to try and make it through 4 cycles of combo followed by 2 yrs of nivo VS if you see a great response, then hold off on giving more drugs.
In our conversations, Dr. Chapman at Sloan suggests that there isn't any evidence that people do better on 4 cycles, the more relevant question seems to be whether you're responding or not.
I'd love to hear how you're doing and what you decided, it's very helpful to have this community. We may be making the same decisions in a few weeks or months!
Thanks
John
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Tagged: cutaneous melanoma, mucosal melanoma
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