Long-term use of Nivolumab

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    • #11956
      Anonymous
      Inactive

      Hello–My husband was diagnosed with Stage IV melanoma in 2013. He had surgery and ultimately participated in a clinical study. He had a complete response to his treatment with Nivolumab. He made the decision to stop treatment because he had no evidence of disease after several scans and although he tolerated treatment well there were many concerns about long-term use serious side-effects. Unfortunately the cancer returned 6 months after he discontinued treatment. Bristol, Meyers, Squibb offered him limited access to Nivolumab and he resumed treatment and once again luckily there is no evidence of cancer. We certainly appreciate these treatment advance but wonder about using Nivolumab for 3 years or more. I can’t seem to get much guidance on this ie. how long, how frequently, continuous? Any input or experience would be wonderful.

    • #11970
      Annette Cyr
      Participant

      Hello Lesley,
      I will throw this out to the community to see if we get a response from anyone. I have to say, this is a unique case. I am sure the physicians see more and could tell you how often this happens. From the thousands of patients we encounter each year, I have only heard of one other case where someone had a complete response for some time, such that they were removed from the therapy, and then had a recurrence afterwards and had to restart, and responded again. It certainly isn’t the norm. Most will have a response or not. If they respond, there is no hard and fast practice at present to determine how long they would be on any of the immunotherapies. At present, I see it quite often that if the patient responds and after one year, if no further recurrence, they will be taken off and wait and see. Most provinces will pay for two years – so that gives you some idea – if you haven’t had a recurrence in two years, then likely there will be a durable response. But, you know, this is all new territory. No one really knows who responds, why and how long should they be on treatment? It is all too new and there are so many variables for each individual that science just doesn’t know enough at the moment to put those parameters in place.

      I know the docs usually want to be cautious about long term exposure to any therapy, so will try to remove folks when they think it is a good option. Sometimes, as you see, that isn’t the best option for some. In theory, the anti-pd1 drugs are to be taken until such time as they no longer work. In practice, you don’t want patients on drugs any longer than they need to be – but again, they don’t know what that timeline is, and in your husband’s case, it appears he needs to be on it longer. I am surprised and happy for you that it is working again. And you are fortunate you are on an extended trial with BMS, as the province will only cover two years in most cases. We’ll see if anyone else chimes in and can give you their experience. I am sure you are relieved it is working as I am sure it was frightening to have it come back, but I know it is a grind going to the hospital every few weeks and there are some side effects that are common like fatigue and rashes Hope he is feeling well.

    • #12009
      Anonymous
      Inactive

      Thank you so much for your quick response Annette! It seems that my husband is always the strange case and we have been very lucky with our timing. Our doctor was denied access to Nivo for my husband when it returned but Bristol Meyer Squibb gave us temporary “compassionate access” after I contacted them directly…I can’t say I’m at all happy with Cancer Care Ontario and Health Canada’s stance on such limited access to these treatments. So painful when a person responds to a treatment but is denied access! His oncologist is actually your keynote speaker Dr. Marcus Butler. Making future treatment plans is basically a crap shoot–stay on as long as tolerable or stop and hope it doesn’t return and if it does hope drugs are made available. I keep asking about patients in Germany or the U.S who may have been on Nivo longer than my husband but Dr. Bultler does’nt know anyone–hard to get used to feeling like I’m learning at the same time as the caregivers. We are always grateful for information and I appreciate you putting me in touch with the discussion forums.

    • #12011
      Annette Cyr
      Participant

      Thanks Lesley – hope you will be attending the meeting – you might actually find some others there that have been on the treatment. Is your husband BRAF positive? There are targeted therapies available if you have the BRAF mutation. Yes, we aren’t impressed with CCO at the moment with their limitations on immunotherapy and we are working to try to impress upon them the implications of their restrictions. Also have concerns about the recent submission that we participated in for the combination therapies – we are waiting to hear the recommendation from pCODR to the provinces on whether to fund the nivo/ipi combo. Data is very good and it is approved in other countries – we would be the odd man out if they weren’t approved. Cost shouldn’t be the driver behind these decisions – effectiveness should be the determinant. There are some other therapies in the pipeline for melanoma, but a ways out. We want patients to have options, not just clinical trials.

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