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What are your experiences with monthly Opdivo treatments

Forums General Melanoma Community What are your experiences with monthly Opdivo treatments

  • Post
    kcmtnbiker
    Participant

      Now that a number of people have been on monthly Opdivo treatments, I wanted to reach out and see what your experiences have been. I hope that I will be coming to a cross roads at the end of October. I am 22 treatments into my second round of Opdivo and based on my last scan, I hope the next one will be good news. I have tolerated treatments very well. For example, I got my biweekly treatment yesterday, drove an RV pulling a car for 7 hours today, then road about 9 miles on a mountain bike in the Ozark hills. I would like to talk with my oncologist about moving to monthly treatments for the remainder of this round of treatments, so I have more flexibility to travel. Back to my questions:

      Do the monthly treatments hit you harder than biweekly? If so – what are the issues?

      Have you had and negitive results on your therapy? I.E have you lost ground in your battle with melanoma.

      One final question, I am seeing that once someone is NED the general proticol is that you should stay on the treatment for 6 months to a year. What are you hearing from your oncologist? My oncologist is leaning toward 6 months.

       

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        KellyH
        Participant

          I asked this same question a few weeks ago as my son is almost at the halfway mark of his treatment and the doctors are also talking about switching to monthly for the remaining 6 months. My son has had very few side effects and has maintained his normal life so far during treatment. So I was pretty unsure about “rocking the boat” so to speak. 

          Overall the folks that are on monthly infusions they said they had no significant differences from the biweekly infusions.  Most  people told me they were fatigued, but that seems to be a common side effect from both treatment plans. 

          We are going to try the monthly I believe starting in November. Monthly does sound much more convenient but I am kinda nervous…don’t fix what’s not broken right?!?!?!  

          Good luck with whatever you decide!!!! 

          Kelly 🙂 

          NEDnotDead
          Participant

            I was switched to monthly at 7 months and have had 3 double doses. Not much of a change other then the fatigue lasting up to a week instead of a few days. It frees me up to travel back to be with family between treatments.

            GreggL
            Participant

              Where did you go mountain biking? I am from St. Charles originally but have lived in Florida since 2002 with a couple years back home in MO while going through chemo. My grandpa lived down at the Lake of the Ozarks. I have recently been looking at houses in Rogers, AR and near Branson on Table Rock. I go mountain biking all the time here in Florida. There are some amazing trail systems down here if you ever make it this way. I was on the original Opdivo dose of twice a month for over 2 years. I just did my monthly treatment yesterday and it was probably my fourth or fifth month of the monthly dosing. Other than fatigue I really don't notice a difference at all. I'm not sure if you ever took the Interferon for melanoma but after that, this Opdivo is like taking aspirin. I became stage IV in Jan 2016 and they took part of my right lung at the VA in STL. I started on Opdivo in April 2016 and moved back to FL and have had clean PET scans ever since so I would assume it's working. Like most,  I was originally supposed to be on it for one year. At my one year mark I went to see a melanoma specialist and he said one more year would be good. Then at my 2 year mark I actually called Bristol-Myers Squibb myself and they said the only indications for me to ever stop taking it would be recurrence of cancer or toxicity levels. So, here I am going on 3 years and it's so tolerable I don't mind. I'm just worried my body will eventually get used to it like I have heard it does with immunotherapies. 

                nicolec
                Participant

                  I had one 2 week dose, and then switched to the monthly dose. I have had 2 monthly doses so far. I would say the side effects are similar- but I only did the one 2 week dose. Mostly my side effects are fatigue and muscle ache- but it's completely manigable.

                  kcmtnbiker
                  Participant

                    Thanks very interesting on the call to Bristol-Myers Squibb, it kind of makes sense. Having come off Opdivo for almost a year and had a very fast and nasty reoocurance, I am not in any hurry to stop treatment.

                    As far as where I rode, it was at Table Rock State Park. There are some awsome trails. I have done some riding in Jacksonville and loved the flow of the trail – nicely banked and fast. The trail I rode was next to the ocean. It's been a few years and I don't remeber the name.

                  HI – I've opted not to move to the monthly nivo.  My oncologist brought it up as an option but didn't recommend it for me.  My neuro team also was against it.  The neuro team doesn't think the monthly dose is as effective for the brain and since I've had brain mets they wanted me to stay on the every 2 week dosing schedule.  I've been on nivo only for 17 months and will go at least another 6 months.  I'm technically NED but they are worried my brain tumor could come back so they are being a bit more careful.

                  Let us know how you do on the monthly dose and good wishes to you,

                  Jennifer

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