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Starting Opdivo on Wednesday
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Starting Opdivo on Wednesday

› Forums › General Melanoma Community › Starting Opdivo on Wednesday

  • Post
    • May 14, 2018 at 4:18 pm
    stevek1959x
    Participant

      So the big day is this Wednesday for starting Opdivo as an adjuvant treatment.  My onco said 12 monthly treatments.  Whoa!!!  Thanks to the folks on this board I said maybe I should learn to walk before I run so I suggested starting with the 2 week treatment.  I did not get any pushback at all but I was surprised they were moving new patients to the 4 week treatment right away.  Meanwhile, I still have my drain in from the lymph node dissection (3 weeks).  My onco said no problem that the treatment could start with the drain in.  They want me to see a PT/Lymphedema specialist but I thought I should hold off until this drain is gone – right?  One of the nurses said it was almost a for sure event that I would be on thyroid  medication as a result of the Opdivo.  Is this what everyone is experiencing. 

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    • Replies
        • May 14, 2018 at 4:47 pm
        iskitwo
        Participant

          I had my first Nivo (Opdivo) treatment last week on Thursday. My insurance would not approve the once a month so I am going twice a month. My oncologist said most only experience fatigue, rash and sore joints but to keep an eye out for other side affects and of course they would do blood work before each treatment.  I don't think everyone that is on it has lost theroid. The side affect for Nivo are much less than Ipi (yervoy). Maybe some that have been on it longer will chime in!

          • May 14, 2018 at 5:05 pm
          Mat.in.Brooklyn
          Participant

            Hi Steve.

            I am currently on the once every 4 weeks Opdivo treatment after finishing the 12 week ipi/nivo combo in February. They had me on the 2 week treatment and then we switched to 4. I haven't noticed a significant difference other than what feels like a more pronounced fatigue for a couple of days after the infusion.

            As to side effects, the ipi/nivo treatment did some endocrine damage. I am now on a synthroid and a hydro cortisone replacement dose. I also developed vitiligo and my beard turned white. I know that the ipilimumab had a lot to do with all. Now that I am on Opdivo only, I notice a bit of joint pain.

            All in all it's all manageable, and once the endocrinologist ( yep, adding to the list of specialists) dialed in the meds, I feel pretty good.

            I wish you the best in your treatment. The side effects are just an obstacle to the ultimate goal.

            Mat.

             

            • May 14, 2018 at 5:25 pm
            KellyH
            Participant

              Hi Steve!!  Looks like my 17 year old son will starting the Opdivo adjuvant treatment a week or 2 after you. I am nervous about it as you are but the benefits definitely outweigh the risks of not getting it with a stage 3 diagnosis. I am thankful that it was recently approved for this kind of treatment. We are meeting with the oncologist next Monday to go over his treatment plan. I am under the assumption he will be getting treatments every 2 weeks as well….at least that is what we had discussed previously. His neck dissection pathology will be back neck week also and we meet with the oncology team right after his post op surgical appt.  Please keep posting how your treatments are going…I am happy to have someone to compare notes with!!! There is strength in numbers!!    Joining this group has done wonders for my sanity!!!! Best of luck to you this week!!!! Prayers for an uneventful course of treatment!!! Kelly 🙂

              • May 14, 2018 at 8:09 pm
              khimes
              Participant

                Started Opdivo as a Adjuvant this past thursday for Stage 3c.  After 1st treatement no real side effects to report. maybe a bit tired … but not uncommon for me at times.  I am doing 13 treatments 1 time every 4 weeks. next one is june 7th.  wishing all of the best!

                  • May 15, 2018 at 12:20 am
                  dessie
                  Participant

                    Good Evening…  I too am on Opdivo and getting ready for  I believe is my 5 th or 6th infusion..  Side effects.. fatigue, rash/itching, few GI effects (looser stools) dizziness , muscle and joint aches… not all at the same time but now and again.. My oncologist decided to stay with the every 2 weeks and did start my infusions  my last week of the JP drain.  My drain had to stay in place for almost 3 weeks, which is much longer than we had expected but did not slow down my treatment.

                    So onlto my 5 or 6th treatment Thursday, colonosocpy Wed (had a positive Cologuard) .  My labs have been stable so no thyroid changes for me.

                    Good luck and hope by sharing all our "journeys". we can encourage each other to get through our treatents.

                    Dessie

                  • May 15, 2018 at 1:37 am
                  Ridingaroundwith27Jennifers
                  Participant

                    I've been on Opdivo only for just over a year now.  Prior to that I was on the combo Yervoy/Opdivo but only tolerated two doses.  The Opdivo side effects I experience are mostly fatigue and some itchy rash.  The itch is not too bad and is controlled with Zyrtec (seriously – I didn't believe the oncologist until I tried it and it worked.)  I do the 2 week interval and they aren't planning to change to the 4 week.  I'm most likely on it for another year but so far so good.  I did lose my thyroid function but they aren't sure if it is due to the Yervoy or the Opdivo.  The thyroid meds are easy to take so not a big thing.  Good wishes to you and to all on this thread.

                    Jennifer

                    • May 15, 2018 at 2:49 am
                    jennunicorn
                    Participant

                      That nurse was quite presumptuous. While thyroid/endocrine issues are a possible side effect of immunotherapy, it is not a given side effect and many of us went through lots and lots of opdivo with our thyroid working just fine. Even IF you do have thyroid issues and need to have prescription hormone replacement drugs… that beats cancer any day 🙂

                      PT after drain is out is definitely a good idea. I only had a handful of lymph nodes removed from my left axilla in November and still deal with nerve damage, but no lymphedema. I do sometimes get lymph drainage issues (swelling) in my left leg where I had a few lymph nodes taken from the groin. If I had gotten a full dissection I would absolutely have seen a lymphedema specialist.

                      Wishing you the best, hopefully you'll have an uneventful time in the way of side effects.

                      • May 15, 2018 at 10:18 am
                      ed williams
                      Participant

                        Hi Steve, love to all the nurses out there but your nurse should read the following link and get up to speed on IRAE's for Nivo as a monotherapy treatment. Best of luck with treatment!!!! Fatigue and some joint pain have been my main side effects on Nivo. http://www.ascopost.com/issues/may-10-2018/nivolumab-in-adjuvant-treatment-of-melanoma/

                        • May 17, 2018 at 4:31 pm
                        MNK016890
                        Participant

                          Well I was Anonymous as of my last post “Stage 3a- treatment options”. I also like many of you am starting Opdivo. My MD opted to start me on once a month infusions, crossing my fingers for little to no side effects. I am starting my first infusion shortly.

                            • May 18, 2018 at 1:10 pm
                            stevek1959x
                            Participant

                              Happy to report that the initial infusion was uneventful.  I might have had a little fatigue the next day but hard to tell when you are retiredcheeky.  I'll be watching you "four weekers" closely so please continue to post updates as I could switch in the future.

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