Nodular Melanoma Stage IIB, Recurrence in-transit metastasis

to the poster: survival rates are really just a statistic. but I content myself with the idea that I got a better than even chance to come out of treatment in remission. I have no scientific basis to believe that other than I don’t have any other health issues. I also figure there might be some significant developments over the next year. But really I think its humane nature to assume its not gonna happen to me.

I kid my caregivers, ‘ I have no symptoms and no side-effects, whose gonna believe I got cancer?” A nurse suggested I get a tattoo. that’s a little drastic and it won’t elicit any sympathy from friends or family anyway.

The jargon too is confusing and my advice is to learn it. It makes understanding a lot easier.

Given my age and er….condition, I am more concerned about surviving Covid right now.

hang in there.

Opdivo (nivolumab) was approved for use in melanoma in 2014. It is super important that we are careful with the “facts” we share, especially with new peeps who are confused and trying to process a great deal of new information all at once. Here’s a time line that may interest you: https://www.drugs.com/history/opdivo.html

Hope that helps. I wish you my best. celeste

https://www.drugs.com/history/opdivo.html

This is a huge intrusion on Red’s post at this point, but because facts matter in all things and are especially important in melanoma – I will, in the words of my favorite professor: “Begin again.”

It is clear from your posts here and on my blog that your diagnosis of Stage III melanoma and the treatment involved has been a huge stress and source of anxiety for you. Entirely understandable. So it is for all the folks newly diagnosed and coming here for factual information and comfort. That’s why being as accurate as possible matters a great deal.

1. Ed is correct in noting the difference in your reported “data” on “the 50% survival rate” you quoted and the data available in regard to nivolumab (Opdivo). It can get confusing really quickly because you have to make sure you are talking about the right drug, used in folks in the right stage you are discussing AND the right category of “response”. Are the studies describing “response rate”, “progression free response”, “overall survival” or as you put it: “survival rate”, etc?????? Those categories can mean very different things.

2. As a person who was likely somewhere between the 28th – 36th person in the United States to take nivolumab, via a clinical trial in the ADJUVANT arm as a Stage IV melanoma patient in 2010!!!!!!!!!!!! – I know from experience that it makes a HUGE difference in having a collection of data and information behind your treatment option and NOT!!!! Here’s a little story that tells the history of Opdivo or as I took it – MDX-1106 – if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/love-potionor-patient9.html

3. So, it is not factual nor comforting to assert: ” I reviewed articles about survival rates and its seems that’s up from 24% for Ipi alone. Nivo was only approved for melanoma in 2017.” If I am wrong, and you have articles that back up that assertion, then I would love to see them.

4. Not going by MY assertions – if you look at the link I gave you, it shows a timeline of all the FDA approvals given for OPDIVO – https://www.drugs.com/history/opdivo.html
For the year 2014 (6 years ago) you will find this: https://www.drugs.com/newdrugs/fda-approves-opdivo-nivolumab-advanced-melanoma-4133.html
This report from 2014 states in part: “December 22, 2014 — The U.S. Food and Drug Administration today granted accelerated approval to Opdivo (nivolumab), a new treatment for patients with unresectable (cannot be removed by surgery) or metastatic (advanced) melanoma who no longer respond to other drugs.”

5. This means, that under FDA approval (apart from the fact that melanoma ratties in the United States had been taking Opdivo since 2009) melanoma patients were treated with Opdivo since 2014. Studies from us ratties as well as data that grew with the 2014 approval consistently show that folks with Stage III and Stage IV inoperable melanoma have response rates of around 40% when opdivo is used as a single agent and through that use we learned what dosage to administer, the likely side effects, rare adverse events that might be encountered, how long they last, and how best to treat them. Important information that you do not have when a drug is first being used to treat a particular disease.

6. In all that trial and error – ie learning – researchers discovered that folks with melanoma responded best to immunotherapy when they had the least possible disease burden. This leads us to adjuvant therapy. Adjuvant therapy is given to a person when their tumor has been removed by surgery and/or radiation. Despite knowing since my trial – though the data wasn’t published until 2014 – that we 33 ratties (2 stage IIIC and 31 Stage IV ) did very well when we took opdivo as adjuvant, the FDA did not see fit to approve opdivo for use as adjuvant in melanoma until 2017. You can see the results of the adjuvant arm of my study here: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html It notes: “Our data suggest that nivo is clinically active in resected stage IIIC/IV melanoma, based on low rate of relapse (10 of 33), impressive relapse-free survival – estimated RFS of 47.1 months, and median overall survival not yet reached with over 32 months of follow up.” REMEMBER – we have learned even more since then!!!!!!!!!!!!!!!!!!!!

7. Here is a report on ipi vs nivo in the adjuvant melanoma setting from 2017: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/09/nivo-better-than-ipi-as-adjuvant.html
That study shows ~ Recurrence free survival at 18 months: 66.4% for nivo 52.7% for ipi
OVERALL recurrence free survival was 70.5% for the nivo group (vs 60.8% for ipi) at 1 year…but…when you pull out the Stage IV folks the number was 63% for nivo vs only 57% for ipi.

8. NOW! When you break things down further, as the info above is beginning to show, folks who are Stage III do better than folks who are Stage IV no matter what you do or don’t do to them. So you can’t just take all the information gleaned from Stage IV patients and throw it at Stage III patients as fact. For instance, in the last report in this post, that addresses Stage III melanoma patients treated with Yervoy (which we already KNOW from the other report does NOT work as well for melanoma patients whether Stage III or Stage IV when used as a single agent compared to anti-PD-1) vs placebo noted in this link: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/ive-said-it-before-ill-say-it-again.html You will see that Stage III melanoma patients, even treated only with ipi, had an “overall survival rate of 60% at 7 years”. To be fair the placebo group had an OS of 51.3%. Hell, even I lived as a Stage IIIB melanoma patient for 7 years with no treatment beyond surgery before advancing to Stage IV and am still here after brain and lung mets and my nivo trial and remain NED for melanoma.

9. Bottom line – comparing apples to apples matters. The amount we have learned about anti-PD-1 since melanoma ratties started taking it in the States in 2009 and after it gained FDA approval for use in melanoma patients in 2014 makes a world of difference to all of us.

Hope this helps. You and Red here, have every chance of a very long life free of melanoma. Be well. Celeste

c