MRF-Logo2019-Horizontal-RGB
Ever End?
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Ever End?

› Forums › Cutaneous Melanoma Community › Ever End?

  • Post
    • June 19, 2017 at 4:43 pm
    blessd4x
    Participant

      My husband, stage IV, finished a course of opdivo over a year ago.  Never recovered from side effects though.  Now we have moles popping up (waiting on biopsies) and a cluster of basil cells removed.  His whole body is wracked with pain.  Swelling, and has 2 large growths in his scrotum that we dont know what they are yet.  Depression is overwhelming for him and is seeing a phychiatrist.  (i need one, but am laid off and no insurance)  Rhumatologist thinks he has Lupus.  

      What the heck is happening?  

      R

       

    Viewing 3 reply threads
    • Replies
        • June 19, 2017 at 5:00 pm
        Sharon93065
        Participant

          I have read and heard of a case history that we can end up with autoimmune disease.

          One gentleman at UCLA my cousin spoke with was all swollen up, but was tumor free.  We really  need to stay out of sun I've read??? to avoid basil cell.  Which i already h ad burned off my nose a year ago.

            • June 19, 2017 at 5:02 pm
            Sharon93065
            Participant

              Did he just have the Opdivo and not Yervoi?  What side effects is he still having?

               

              • June 19, 2017 at 5:36 pm
              blessd4x
              Participant

                Just Opdivo.  Rash, temp fluxuation, depression, just recently his whole body has swollen, moles popping up, in constant pain, the basil coming up on his nose and head constantly, now dr saying he has lupus and the growths we dont know anything yes and biopsies are not back on the moles. 

              • June 19, 2017 at 5:36 pm
              Julie in SoCal
              Participant

                Hi R,

                Oh I know this "body wracked with pain" that you talk about!  I was on Keytruda (Opdivo's twin) for almost 2 years and it gave me a terrible, horrific inflammatory arthritis.  I went to a Rheum who was used to working with patients who have had Keytruda et al. and he did a bunch of tests for lupus and other immune system problems.  All were negative. 

                I've been on a very long taper of Prednisone now for a couple of months and it's made a world of difference.  Once I started the steroids I felt almost immediately better.  Now I'm dealing with the reality that I've been immobile for a few months and am doing voluntary pain and torture (PT) to get my range of motion back in my knees. 

                I say this to tell you that there is light at the end of the tunnel (and it's probably not a train).  Keep working with his docs.  If his docs seem confused by his medical status (you posted Anon so I can't see any of your history to know where you're at) find a doc that is familiar with immunotherapy, or ask for a second opinion.  There are Rheums that can help.  Also search this site (the bulletin board part) for other posts for keytruda or opdivo and arthritis.  It's a thing and we've talked about it before on this site.  

                Wishing you and your husband peace.

                Shalom,

                Julie

                  • June 19, 2017 at 5:41 pm
                  blessd4x
                  Participant

                    yes they are giving him Steroids now.  That should make him just a delight to be around. lol  I hope it works.  He's the shell of the man he was 2 years ago.  If the biopises come back more mel, then what?  With Lupus you cant be on Opdivo or Keytruda.  My heads about to blow up.  

                    • June 19, 2017 at 5:54 pm
                    Julie in SoCal
                    Participant

                      Glad to hear he's on Steroids.  He should start to feel better soon (yes, maybe a little crazy, but this will be feel better crazy and the steroids won't last forever.  This is good.

                      As for Lupus and ketruda / opdivo.  Take it one day at a time (Hard I know) but don't borrow problems.  Stay in today and deal with today's problems.  

                      You'll both get through this!!  Hang in there!

                      Julie

                    • June 20, 2017 at 4:56 pm
                    MikeW
                    Participant

                      I echo Julie's experience on Keytruda and I'm on a low dose of prednisone right now that's working. I also had my knees shot up locally with steriod…worked wonders. 

                      • June 20, 2017 at 9:04 pm
                      betsyl
                      Participant

                        Hi R,

                        So sorry this is happening. I hope the Steroids sort things out.
                        How long was your husband on the Opdivo? Did he have bad side effects during the treatment phase?

                        Best wishes,

                        -Betsy

                    Viewing 3 reply threads

                    Tagged: 

                    • You must be logged in to reply to this topic.
                    About the MRF Patient Forum

                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                    Popular Topics