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Scans and Keytruda infusion #14 are in the books
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Scans and Keytruda infusion #14 are in the books

› Forums › General Melanoma Community › Scans and Keytruda infusion #14 are in the books

  • Post
    • May 11, 2018 at 2:34 am
    BillB
    Participant

      Completed Keytruda infusion #14 today along with brain MRI, CT scans of the neck and body. Scan results were still clear. Scanxiety is reduced for another 3 months. I’m sure my wife will be happy about that as I understandably  get a little ornery at the end of the 3 month scan cycle. 

      Tex raised the question from his post yesterday regarding how long do you go before stopping. Wish I could answer that question myself. This subject has been on my mind since January and reading some of the recent posts regarding progression just muddies the waters and my thought process. It was a subject of discussion I brought up with my oncologist today and hope the discussion helps others and stirs some additional discussion since we, and we alone have to make the final decision when to stop.

      Today was my third set of clean scans (October 2017, January and May 2018 ) since I moved to stage IV in August 2017. My oncologist believes based on my initial complete response and her other patients records with Keytruda and stopping infusions that I can also stop. She is not pushing me to stop, but also doesn’t want me to develop any debilitating side effects from the treatment. So far I have just experienced some fatigue, joint pain in my hips hand, and shoulder. Nothing to deter me from pursuing my hobbies. But, she also doesn’t want it to get worse. There is some interesting reading regarding durable response on Keytruda after CR. It’s a follow up paper from clinical trial  Keynote 001. I’m  pretty sure I read the summaries on Celeste’s blog but I will try to give a link to the full paper. I have read it along with my sons and the data is positive. I also inquired about if I stopped the infusions in reference to Keynote 001 information, could I restart them if I progress. Her thought was she didn’t see why it wouldnt work again but did qualify that there is no 100% assurance with anything melanoma related. 

      So after reading  the above referenced paper over and over, comparing my information against the information in the report,  I do feel that I could stop the infusions, but I just don’t have the confidence or the ……….. to make the decision and stop yet. Working on that. I wish everyone else success, and the fortitude to make the right decisions.

      http://ascopubs.org/doi/pdfdirect/10.1200/JCO.2017.75.6270

      Bill

       

       

       

       

       

       

       

       

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        • May 11, 2018 at 3:23 am
        MelanomaMike
        Participant

          Hi Bill, my name is Mike, ive been on here at MRF for a short while, a pal of "Tex" that you mentioned here on todays post by you. I am so glad the Keytruda has worked for you, NED is what were after, or atleast no progression so that we may live to fight another day. Ya well, good ol' Pembro unfortunetly didnt work in my favor, 7 infusions and 2 scans wasnt panning out like it could have, 1st scan was "bitter/sweet" 2nd scan revealed tumors getting larger as if i wasnt taking anything…Ok, no biggie, i live to fight another day. Tommorrow {matter of fact} i begin my 1st round of Opdivo & Yervoy. I hope this will be my combonation to unlock extended life.For more info on my Melanoma history, feel free to read my bio…Take care brother Bill, thats Damn good news that you continue to be Melanoma free….Mike

            • May 11, 2018 at 3:56 am
            Coach2u
            Participant

              Happy for you Bill, May your luck continue. Unfortunately for me I’m in Mikes shoes too. Keytruda did not work and now 4 months after mostly clean scan and 4 sessions, 3visable tumors. I have been dealings with this on my leg for 13 years and only surgery so this immunotherapy is new to me. Next up as MIke obdivo and Yervoy.  Congrats hope to join you soon.  MIke K

              • May 11, 2018 at 4:01 am
              Coach2u
              Participant

                Hey Melanoma MIke let me know how your first session goes please. Immediate side effects or whatever  I go in Monday. Coach2u or MIke K

                • May 11, 2018 at 10:07 am
                BillB
                Participant

                  Hi Mike, good luck today the ipi/yervoy combo does have some increased side effect risks but also provides some additional prognostic benefit. Let us know how everything goes.

                  Bill

                  • May 12, 2018 at 10:16 am
                  BillB
                  Participant

                    Hi Mike, how did your first yervoy/opdivo Infusion go?

                    bill

                  • May 11, 2018 at 2:56 pm
                  Bubbles
                  Participant

                    Hey Bill,

                    You are asking the zillion dollar question (or at least one of them!!!) in melanoma world!  How much immunotherapy is enough?  We still have no absolute well defined answer.  However, from being a rattie in a 2 1/2 year nivo trial (that was the deal..none of this forever business…BMS called the shots and after 2 1/2 years that was it whether you wanted to take it longer or not.  I didn't want to, by the way.  But some of my cohort did.) and from reading the literature daily all these years…here is my personal answer:

                    If I were a Stage IV melanoma patient with a complete response to immunotherapy, without terrible side effects, I would probably opt to take it for somewhere between one and two years.  And to be a bit more specific…I would take it at least 1 year past the evidence of a complete response.

                    Remember, this is only my opinion!!! Melanoma treatment and decisions behind stopping treatments are extremely personal, period.  Made more so by the lack of definitive information and inability to feel we are CURED by current therapies, even when we do have a complete response.  I really do think we are making progress daily.  Hopefully we won't have to live with so many unanswered questions very soon!!! 

                    I wish you well with whatever you decide.  Yours, celeste

                      • May 12, 2018 at 10:21 am
                      BillB
                      Participant

                        Hi Celeste, happy mother’s day tomorrow. Yes it’s a zillion dollar question. Right now I will be on Keytruda for a year come the beginning of August and I will evaluate then. I liked the idea they used in your trial of quarterly maintenance doses (at least I remember it that way). I actually inquired about tapering off and my oncologist said she has had other patients do that. That might assist with the “mental” aspect of ending the treatments.have a great day today.

                        Bill

                      • May 12, 2018 at 12:52 am
                      ed williams
                      Participant

                        Hi Bill, welcome to the I don't know when to stop club!!! I won't bore you with all the details but I am in my 52 month of Nivo treatments and they finally decided to do a Pet-ct a couple of months ago which came back showing no uptake on my stubborn lung tumor. I wish the trial would have used Pet-ct scans instead of regular ct with contrast or at least once a year but at least I now know with some confidence that the tumor is probably just dead tissue or scar tissue. When to stop is such a tough topic, I wish I had more confidence in the government health system in Canada. I am not sure if I stop and later relapse if I would be allowed access to Nivo again, and not having the Braf + mutation might leave me with no good options!!! Well if beating melanoma was easy then every body would be doing it, right? Melanoma humor!!! Best Wishes with your decision and thanks for the article!!!Ed

                          • May 12, 2018 at 10:46 am
                          BillB
                          Participant

                            Hi Ed, thanks for the background.  It was an interesting report. Having potential issues with the health care system would definitely compound the decision. Also Ed, thanks for you constant presence and help to everyone on the site. Have a good weekend,

                            Bill

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