Stage 4 survival: When will we know the real story?

Great question and honestly something that I've been wondering myself.  With all the trials and studies going on when will they have some updated stats for us.  My guess is that they want to be very conservative with publishing any findings and perhaps don't want to put time and money into collating the data when they can put time and money into research and trials.

I have been collecting, and providing, data for trials and melanoma since 2003…and more importantly since 2010. You might find this melanoma Mother Goose story interesting: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/love-potionor-patient9.html  

Here's the deal:  PD1 was noted to be a "thing" in cancer world in 2000.  As per the bedtime story above…Ono pharmaceuticals started working on ANTI-PD-1 in 2005.  Ratties with melanoma like myself started taking it in trials in 2010 and a little earlier.  Ipi (ipilimumab/anti-CTLA-4) started trials a bit earlier in melanoma ratties.  As such, ipi was FDA approved for melanoma in 2011. (Yep, just 6 years ago…with its 15% response rate.) BRAF inhibitors and MEK inhibitors were in trials in 2000 as well.  The first BRAF inhibitors were approved in 2011.  MEK inhibitors were approved in 2013 (I think.) The combo was not approved until 2013.  The anti-PD-1 products – Nivolumab/Opdivo and Pembrolizumab/Keytruda were FDA approved for melanoma patients with their 40% response rates in 2014.  (This is general as I am skipping over many limitations when looking for data, as the first approval was for BRAF V600 patients only, etc, etc.) And finally, the ipi/nivo combo was approved in 2015.  Keytruda and ipi are in trials currently.  

Soooo….if the ratties like me, began the treatments I speak of around 2010 and and just a few years earlier….yeah…we've got a way to go to determine outcomes.  My last dose of nivo was in June of 2013 and I remain NED.  But that is still only 4 years ago (or slightly more than 6-7 if you count from the first dose delivered).

Here is one of the best durability reports on ipi (and other general background info) from 2015..which in the overall scheme of things is the old-timer here:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/ipi-for-melanomathe-data-keeps-pouring.html  

I don't know if this little story makes you feel better or worse.  We've come a long way baby….though we still have a long way to go!!!  I wish you all my best.  celeste

Hi Betsy, just to add to what Celeste has already given you is a presentation by Jim Allison who is considered to be one of the leading researchers in the field of Immunotherapy, especially Ipi. At the 4:00 min mark he does a summary of some of the drugs and when they came to market in Melanoma. There is also something very interesting at the 28:30 for Celeste if she reads this post. Best Wishes!!!Ed https://www.youtube.com/watch?v=r1Fp6C1xx6Q

Hi. The very honest answer I get from my oncologist is 'we don't know' when I ask about this. Scientists don't like to guesstimate.

 However there are two moments in my hundreds of visits to my many specialists that shocked me. The first was at the beginning (2014) when one of my oncologists suggested getting in with 'palliative care'  before I started keytruda, and the second was this year at my rheumatologist ( we are working on a plan of immunosuppression to counteract the keytruda side effects)  where he said ' in your case this could be curative.' I don't think my oncologist would have dared to say that, but the rheumatologist can be more unguarded as it's not his field. Still it shocked me. So I think if a doctor can realistically hope for that we all can.

So to answer your question I started keytruda at the end of 2014 so I hope to be in the 5 year survival stats in reported in 2020. Hope you and all my buddies here are too!!!

Here is how and when you will know.

You simply go about the business of living and stop obsessing over "data"….the years will go by……or not.  You will be the first to know.

To the best of my knowledge human life is finite……………none of us are getting out of here alive in short.

If estimates you want, here are a few.

1987, dx'd Stage III unknown primary, "estimates" were it was not a question of if, but when.  The time bomb theory.

Reoccurence Stage IV 1996…………..anyway I will not bore you with the details , I have went  through well over 200 individual injection/infusions, a dozen surgeries from 1996 thru 2008.

Just for a bonus last year I got another surprise recurrence and did Keytruda as a result of that surprise.

To sum up:  Charlie 30 Melanoma 0

You have GOT to go about living…it is YOUR life; live it; and not as a statistic…………..but as a living, breathing, loving, caring, all out fun seeking person so when you DO die you are a spent cartridge.

More than one doctor has looked at me after I gave them my medical history and said "how can that be true ?"

Well, because I am standing here in front of you and I have the medical records to prove it, that's how.

 I am not, nor have ever been, nor will ever be………………… a statistic.

So that's my story and I'm stickin' to it.

Cheers,

Charlie S