MRF-Logo2019-Horizontal-RGB
Opdivo question
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.

Opdivo question

› Forums › General Melanoma Community › Opdivo question

  • Post
    • February 9, 2019 at 5:33 am
    danny201819
    Participant

      FOLKS who have used Opdivo alone please input your thoughts, Mom was dx vaginal mm in oct 2018 , surgery was out of question as this would be very invasive so doctor gave us 3 options
      opdivo, Opdivo+keytryda or Yervoy+Keytruda+aspriin, we chose option 3 and wanted to take it head on. Before starting the first infusion she had scan which showed one of her tumour is half in size now and the rest is stable. Just before the infusion doc changed the plan and said lets start with just opdivo. She had her first infusion of opdivo 3 days ago and no side effects until now. I am concerned if Opdivo ever works alone, with so many folks here writing that the disease progressed with just Opdivo and then they switched to combo. I am wanting to go for combo and going to ask the doc for it. Please input your thoughts , why try single drug when we know that the combo is more effective. Am i missing anything ?

    Viewing 1 reply thread
    • Replies
        • February 9, 2019 at 11:13 am
        ed williams
        Participant

          Hi Danny, it is hard to give medical advice about what treatment is best, oncologist would be better person to answer that question. I think you might have the options mixed up a little bit, I have never heard of any oncologist offering Opdivo(Nivo) + Keytruda(pembo) together. More than likely you wanted to say Nivo+Ipi or Nivo alone as a monotherapy. Usually oncologist lean toward giving Nivo alone based on the fact that the combination comes with some pretty nasty side effects!!! The combination does work in a higher % of patients and the most recent data published by Bristol Myer Squib is posted below. I am assuming that your mom has muscosal melanoma? I am sure some one with specific experience with muscosal will post more specific experiences to help you give your mom guidance. Best Wishes!!! Ed https://www.nejm.org/doi/full/10.1056/NEJMoa1709684

          • February 9, 2019 at 5:44 pm
          RichInLife2
          Participant

            I was diagnosed with stage IV last July. I chose Opdivo alone over the combo because I was concerned about the additional side effects from the combo versus the additional benefit. The Opdivo seems to be working for me. Anti-pd1 drugs like Opdivo or Keytruda seem to work best in people with a high pd1/pdl1 expression in their tumors. Do you know what your mom’s is?

            Good luck!

              • February 10, 2019 at 12:19 am
              ed williams
              Participant

                While I agree with some of what you have said about Pd-L1 + status and how those with Pd-L1+ stained tumors do better based on data from trials like checkmate 067 , see link above in my previous post. If you look at the data on overall survival based on Pd-L1+ status in trials the patients on Ipi+Nivo did better than Nivo alone. If you go to supplementary appendix Table 1 of above article you will see the raw data from checkmate 067, the trial that led to the approval of Ipi+nivo and nivo monotherapy. Here is a link to appendix and page 5, 7 and 8 show Overall survival and Pd-L1+ status results.https://www.nejm.org/doi/suppl/10.1056/NEJMoa1709684/suppl_file/nejmoa1709684_appendix.pdf 

                • February 10, 2019 at 12:20 am
                ed williams
                Participant

                  sorry link doesn't work, you will have to use the original link in my first post, then go to supplementary appendix.Ed

                  • February 11, 2019 at 4:42 pm
                  danny201819
                  Participant

                    Thanks Ed, my mom's melanoma is mucosal and i dont think the doc ever tested the tumour. 

                    I am goign to ask for it. 

                    • February 11, 2019 at 7:46 pm
                    danny201819
                    Participant

                      checked with my doctor and  he said your PD1 percentage was low but he would not switch you to Ipilimumab plus Nivolumab just yet. He'd like to have you continue on the current nivolumab alone and rescan you with a CT of the Chest, Abdomen and Pelvis in 12 weeks and make a decision off of those scans. After those scans, if necessary, then he'd add ipiliumab (Yervoy) to the regimen.

                       

                      Does this sound a goodplan ? 

                       

                      • February 11, 2019 at 8:05 pm
                      ed williams
                      Participant

                        Hi Danny, If I read things correctly your mom has stable disease correct, in that case giving nivo more time until next scans makes sense to me, why push the combination and possible side effects if nivo is working on it's own. One last thing is the Pd-L1+ staining level which you asked your oncologist about is not used as a biomarker because many with low levels of pd-l1+ respond, it is just that trials have shown that those with higher % Pd-L1+ staining do better. Another thing about the pd-L1+ tests is the fact that they are  different from one drug company to the other so very hard to compare study trials and their data. Best Wishes!!!Ed 

                        • February 11, 2019 at 10:36 pm
                        danny201819
                        Participant

                          Firstly I cannot describe in words how thankfull I am to this group and all those who take time to respond to questions like me, so thank you very much. Giving you some background my mom was dx in oct,2018 and she had lymph node metastis at them time with one node measuring 24mm , We starting doing alot of things at home so that we can control somthing before we can get through appointment, insurance approvals to see an oncologist. Her onco repeated the PET ,CT MRI and came back with same results. While we were making decisions to enter a trial ( Ipi.Pembro and Aspirin) which was recommended by the melanoma specialist at UCSF  we were also doing home remedies like juicing etc. so right before starting the trial he ordered another CT and the results showed one lymph node reduced in size from 24mm to 13mm so right before the first infusion he changed the plan to switch to just nivo. I am glad that her disease has not progressed but I am scared everyday and pray everyday that it comes under control with just nivo. Thank you so much for guiding me on the PD-L1 staining and what it means. 

                          • February 12, 2019 at 7:12 pm
                          RichInLife2
                          Participant

                            While I can't comment in the efficacy of aspirin in fighting melanoma, I will repeat that Opdivo alone seems to be working for me. Believe me, I understand wanting to blast your mom's melanoma with every weapon in the arsenal, but sometimes it's best to keep some weapons in reserve. It sounds like your mom's own immune system is putting up a good fight right now, so I can see the wisdom in proceding conservatively now in order to minimize potential side effects. If the cancer does progress at some point, you can then add ipi or other drugs later.

                            Good luck to you and your mom. 

                      Viewing 1 reply thread
                      • 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