3 Years Opdivo???

Hi Maryb-z
I am just about to post update on my treatment. I have been on keydruda nearly 3 years now. Been NED for 18 months since on treatment. We have made decision to have my last dose on monday. I am nervouse about coming off but same time happy for a break. Very hard decission to make . I have had no bad side effects but could still develop them at any time. I can resume treatment if need to if returns . Some people stop once reached NED regardless of how long have been having it. Some stop for bad side effects but still either NED or stable. Think its your choice with sound of it. See what others say , sure you will get other views on it .Wishing you well.
Scooby

Hi maryb-z, this is such an interesting topic and one that I struggled with for a long time. Brief background, I started on checkmate 067 in January 2014 with two lung mets and previous treated brain mets (3) with SRS that killed them in the fall of 2013. I was in a blinded trial so didn’t know if I received Ipi or Ipi+nivo or nivo monotherapy. Time goes by and tumors gets smaller down to about 1.1 cm for larger one and second tumor goes away completely and remains the same for the next few years on Ct-scans. Eventually the trial unblinds patients left on trial after about 4 years and it turns out I was on Nivo monotherapy. At about 5 years I was able to get approval for Pet-ct and found no uptake in tumor that is still showing up in my lung. This is pretty common, with tumor showing up on ct but probably just dead tissue. Fast forward to 5 year 9 month point and still on trial, the trial was set up that you could stay on up until progression or side effects IRAE’s. Well, I finally developed an IRAE, collitis and was kicked off the trial, I probably would have kept going if it wasn’t for the collitis. I love Dr. Weber and his experience is probably in the top 1% of oncologist’s, but one thing that he has repeated, for the last 6 years or so is the cost of immunotherapy drugs and can the system support everyone getting immunotherapy with no end point or fixed amount of treatments. Cost has always been part of his view and it is a pretty realistic view point of the medical system. This doesn’t mean stopping at 2 years is based on science, since all the trials were set up differently. The way I look at stopping is the data is based on a very small amount of information from keynote 006 and 001 and another report from Memorial Sloan Kettering.( see following link) I will let you read the report from Memorial Sloan Kettering yourself and the second link is from Dr. Michael Davies of MD Anderson and he goes into more detail of the report from Memorial Sloan Kettering and his view. https://ascopubs.org/doi/full/10.1200/JCO.19.01464 https://ascopubs.org/doi/full/10.1200/JCO.20.00136

My melanoma tumor showed less and less activity in PET scans after April 2018. My December and June PET scans showed NED. My oncologist based her decision on when to stop my immunotherapy on Dr Weber’s talk that you mention. My May immunotherapy was my last one.

What you share depends on what you want to do. Do you want to come off therapy? Or do you want to stay on? It is all very personal.

I agree with most of what Ed is saying, except for one part of his perspective – which I’ll get to in a minute.

I was a patient of Dr. Weber’s for many many years!!! Diagnosed as Stage iiib melanoma in 2003 (no treatment other than surg, because there was none) I progressed to Stage IV with brain and lung mets in April of 2010. I had SRS to brain and surgery to lung. Trying desperately to find treatment – I found a phase 1 trial for MDX1106 – the drug that is now called Opdivo – in December of 2010 under Dr. Weber. I and my fellow ratties were given Opdivo at various doses depending on cohort, for 2 1/2 years. I had my last dose in June of 2013 and have been NED for melanoma with no additional treatment since.

My main points are these:

I was NED when I stopped Opdivo (something neither I nor any of the other ratties in my trial – nor Dr. Weber had any choice about – as that is what BMS – the maker of Opdivo – made us all do). To my mind it is much easier to be comfortable stopping therapy when you have been NED for a while rather than when you have “something” still staring at you on scans.

Where I differ with Ed, is the possible implication that Weber’s advice is influenced by cost. I have personally spent hours talking with Weber. He told me when we were nearing the end of my 2 1/2 years on the trial that it was his belief that he had given us the medicine too long already. He readily admitted that he could not PROVE that, but it was his belief that a “certain amount” of the drug will help you and to take it longer was to waste time as it would do you no good and would only increase your chances of developing side effects. I do not think “cost” is something that figured into that analysis. However, his mind is one of logic and he views discussions and options in melanoma with extreme completeness. As financial ramifications of treatment are an issue, he is not one who would shy away from discussing that – but I don’t think it would affect how he would advise a patient on their plan of care.

Just my take and my personal experience – with the drug and the man. I wish you my best whatever you decide. Celeste

I stopped Keytruda in January. Side effects were getting bad, and there wasn’t much cancer left. It was still there, though. The immunotherapy in my system must have kept working, because the next PET scan in April showed NED.