Near End of Opdivo Treatment

I second John's congrats and story!!!  Stage IV, brain and lung mets, but NED for melanoma for almost 9 years after 2 1/2 years of nivo.  Scans were every three months for a couple years, every 6 months for a few years, and then annually for a couple of years.  Last brain MRI to be routinely done, completed in August!  I'm sure your doc will lay out a follow-up plan for you.  May you be NED for a long, long, lifetime, Robie!!!  celeste

As others have mentioned your doctors will have a follow up plan but I found it difficult emotionally moving from the active treatment stage to the follow up stage. Kind of like a baby bird being thrown out of the nest to fly. I went through this in 2010 after being diagnosed with stage IIIA and following surgery, completing 52 weeks of Interferon. I found that I felt I was no longer as emotionally vested in fighting the Melanoma. During my year long Interferon treatment I had made the decision to return to school and enter the health care professions. I found myself using the opportunities to complete research papers, presentations etc. to educate others on the dangers of Melanoma. This lead to reaching out to The Melanoma Network and eventually becoming a peer support and patient experience speaker at their information seminars. I have found that this has kept me feeling like I am still actively fighting the disease as well as current on new research. I have experienced a recent recurrence ( local) after almost 10 years which was taken care of via surgery. I will be starting Opdivo in February and continue to offer peer support as well as write and speak. I find it helps the mental and emotional aspects of this disease. It might not be for you but it is just one of the options.

Why in the world would you come on to the forum as an Anon if you are a melanoma advocate on the Melanoma Network??? We don't bite, find a name, make one up, use it so that people get to know who you are, and build up some credibility!!!

Sorry, it was a mistake. I couldn't edit and repair to show my name after it posted.  I have made them before and will make them again and I don't believe I am alone. I really don't believe that making that one mistake automatically destroys my credibility. Are we truly that superficial? Why not just ask my nameand mention that it posted as Anon? I am done discussing this, there are much more serious issues on everyones mind. 

Hi Beth, I have a thing about Anon's giving advice, I just don't get it!!! I understand Anon's asking questions looking for information but when it comes to giving advice I like to know the source of the information. For example when you gave advice and stats about interferon and Nivo on another post as an Anon, I challenged your comments because the % you gave out were from what I have read not accurate, 20% for interferon when no survival benefit has been found to be a more accurate description of it's benefit. I try to direct melanoma patients to information and let them process it for themselves. I try not to give advice since I am not a medical professional!!! I think it is important for those who give out advice to at least post their name or made up name, for me track record is important!!!Ed

I am reluctant to even answer as I said, posting as Anon was a mistake!!! I have recently stated that my information comes from my Oncologist who is one of the top Melanoma Specialists in Canada and has been working with Nivolumab for in his words " ten years". His statistics are gathered from his patients and may not be published in any articlesyou have access to. When gathering information via scholarly scources I try to stay away from any resource published by a pharamacuetical company and stick to peer reviewd articles. Please, I am done with defending myself. If you want to know my track record and my profession try asking in a polite and respectuful manner. I strongly believe we have taken up more than enough time regarding this issue so if you could kindly agree with me to end this discussion I would be very appreciative. My Oncologist is Dr. Richard Tozer at the Juravinski Cancer. 

Hello Beth,

Many of us on this board have been posting on this forum and dealing with melanoma for MANY years (16 years since my Stage IIIb dx, Stage IV for more than 8) while others are newly diagnosed.  But, if you look around you will find that those of us who tend to share data DO use and have access to peer reviewed scientific journals with articles from international melanoma researchers and eschew "adverts" by Big Pharma.  Just say'n!!!  Yours, celeste

That is wonderful to hear, Robbie!!!!  I am so very glad that you are feeling better.  Yes, joint pain is a PAIN, alright!!  I recently answered someone dealing with it that those of us who have had immunotherapy usually experience joint pain and it is only a matter of degree how bad it is!!!  I am sorry that you were so debilitated, but ever so glad that it is better. Isn't it crazy what we can adjust to living with, never realizing how bad it really was until we get some relief???  I hope your arthralgias do not return, but if they do, please seek help.  You and your docs could always consider another round of prednisone or if necessary remicaid or other drugs in that category as "jubes" has done to good effect.  Mostly, though….I am ever so glad that you are better in all ways….and hope that it continues!!!! love, c