- May 16, 2017 at 4:56 pm
I am 54, fit, first timer, 3B; recently fully resected ulceric 2.5cm mid back tumor that showed macro to several of one set of lymph nodes. That removal is next week, and per PET/CT and MRI nothing else is showing up.
My oncologist was very straightforward about going on yervoy, and much of what I am getting in feedback is pretty positive about that prospect, given the newness and initial shock when I got prognosis numbers after surgery.
I'm glad for the sense of rapid and recent progress that provides so much encouragement for all of us. That an option like yervoy exists.
But, in spirit and attitude, I think I would not be intimidated by being part of the next wave of research, especially where there is possible reward as well as possible risk.
So I am asking if you can speak to:
1) making the decision to try to get into a trial when that is not the first "go to" response (my oncologist wasn't expressly negative, but didn't really pick up much on my interest), and/or
2) the general proposition of "fighting back hard by attempting to volunteer for the new weapons testing brigade." Even when you are not expressly in the "need to do this" category vis a vis clinical participation.
I wonder if my new found sense of mortality hasn't made me actually a bit LESS risk-averse in this regard.
Also, can anyone say with the anecdotal cutting edge knowledge of recent experience; "this is where the smart money is going – get on a combo therepy instead of last year's new breakthrough" etc. etc.
Pardon my somewhat flippant language. If my characterizations or set up are the problem in this analysis, criticize freely.
And thank you in advance.
- May 17, 2017 at 12:36 am
Sorry you are dealing with all this. I'm not entirely sure what you are asking…but I'll give it a go. The truth of the matter is that neither ipi nor the ipi/nivo combo are "new" in melanoma world. Then again…when you consider that all current treatment for melanoma has only been FDA approved since 2011…maybe they are. They ARE "new" as far as their use in folks who are Stage III.
Here's the down and dirty. 2010 – none of the current effective treatments for melanoma of any flavor were FDA approved. 2011 – saw the approval of ipi for Stage IV patients. Average 15% response rate. Pretty significant side effects. (Anything that your immune system can rev up is at risk when you take 'immunotherapy': colitis, rash, fatigue, pneumonitis, arthritis, thyroiditis, etc) But, it was an amazing gift to those of us who were facing nothing!!! 2014 – saw the approval of both anti-PD-1 products (nivolumab/opdivo and pembrollizumab/keytruda). Also both categorized as immunotherapy. Both with similar side effects and response profile. Response rate – about 40% in Stage IV patients. Side effects in the same category as ipi, but less aggressive in that regard. 2015 – FDA approves ipi/nivo combo for Stage IV melanoma. Side effects are a bit greater with the combo than with either product alone. Most side effects are due to the bad boy ipi. Response rates in Stage IV patients = 50% +. 2015 was also the year that ipi was approved as adjuvant for folks who are Stage III with resected nodes.
In regard to immunotherapy, we know that folks with the lowest disease burden respond best. In melanoma, we know that it is a sneaky beast, that may well have ugly cells floating about just waiting to do us harm. However, when you are Stage III, sometimes it is a reasonable choice to watch and wait…with the plan to treat when/if you advance to Stage IV…though at that point you may have lost your advantage of a low tumor burdern
Then there is you: Your lesion was considered large. Ulceration and multiple positive nodes are, unfortunately, not positive prognostic signs.
You are correct. Clinical trials are not for everyone. I am a rattie, so I know from which I speak. I entered a nivolumab trial in 2010 after having been diagnosed with a smaller tumor than yours, no ulceration and only one microscopically positive node in 2003…after progression to brain and lung mets in 2010. Lung met removed. Brain met zapped with radiation left me NED. (No evidence of disease.) Good news, right? Well in 2010…not so much. There were no meds available. I was offered nivo in an NED vs active disease arm for Stage IV patients. I knew ipi was coming on line soon. I asked my doc…."Why shouldn't I wait for that, rather than participate in your experiment?" He said, "Because I think anti-PD-1 will work better with fewer side effects." I decided to believe. He was right. I took it for 2 1/2 years. My last dose was in June of 2013. I remain NED.
I cannot tell you what you SHOULD do. You can only do what feels right for you. You will still be a rattie because, like my cohort….we were "NED"…albeit Stage IV vs Stage III. It takes longer to tell what the precise response is…in those of us who had no measureable disease when we enter treatment and who may have never advanced/progressed or at least not for some time with no treatment at all. There is this…that might be important for you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/sequential-nivo-then-ipi-orr-of-41-ipi.html
The bottom line of that abstract is this: Sequential nivo then ipi = ORR of 41%. Ipi followed by nivo = ORR of 20%!!!!
To make matters slightly more complicated….I think that there are some Stage III trials in process using BRAF inhibitors for folks whose tumors are BRAF positive. (Something that you should have your tumor tested for…if only for future information.)
Things that have served me best when deciding how to deal with my melanoma treatment choices: (1) Make sure you are seeing a melanoma specialist. (2) Ask, "Which of these options would you choose for yourself, your dad, your brother?"
Hope this helps. I wish you well. There is a fair amount of data regarding all of the above and Stage III melanoma on my blog. Just use the top left search bubble if you are interested. Celeste
- May 17, 2017 at 12:11 pm
I think your understanding of the topic transcends my ability to formulate questions in the topic.
Your post is absolute gold; except more valuable.
Not much to love about this, but the affirmation in life that knowledge is power is one thing.
Connecting with those who will take of their own time to assist others (no strangers here!) is another.
- May 17, 2017 at 12:53 am
- May 17, 2017 at 2:51 pm
Hi, my first time posting. My husband is Stage 3b, and our Oncologist has him on the 10 mg Yervoy Treatment per Dana Farber in Boston's recommendation for adjuvant treatment. He has had two infusions and so far, is doing really well. In fact, it is hard to pinpoint for him if he feels anything "weird". We asked Dana Farber about the combo we read about, but that is strictly for Stage IV. Hope this helps….
- May 18, 2017 at 3:22 pm
Thank you for venturing out, and yes, it does.
The webinar mentioned in this thread below contains much relevant information.
Maybe this is already on everybody's "newbie III-IV "required reading list".
I wanted Netflix for melanoma patients after viewing…(you watched, you'll like…)
- May 17, 2017 at 2:55 pm
Since knowledge is power, you might want to check out a melanoma specialist's opinion; http://melanomainternational.org/webinar/2016/01/decision-making-for-melanoma-stage-iii-beyond
for more ammunition Good luck to you
- May 18, 2017 at 3:07 pm
This is simply invaluable. Thank you for sharing this, and I think you also "taught me how to fish" just showing that this level of info can be reached, and brought into discussion.
For anyone else who made it to this comment in search of similar info, every minute of this webinar is valuable, and I watched several parts quite a few times. It not only gives great info and science, but adds to a greater overall perspective on treatment, decision making and understandng data. 5-stars.
I feel like I was late to class, but everyone else took diligent notes for me.
And that it is totally allowed to do that.
- May 18, 2017 at 11:32 pm
There is also an online or via telephone "workshop" tomorrow (Friday, May 19) beginning at 1:30 pm EST (10:30 am PST). It is part III of a series. You must register ahead of time, but it is absolutely free. I believe parts I & II are posted on the CancerCare website and are streamable… but I haven't fished around for them yet.
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