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9th Keytruda Infusion + Scans
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9th Keytruda Infusion + Scans

› Forums › General Melanoma Community › 9th Keytruda Infusion + Scans

  • Post
    • January 26, 2018 at 12:33 am
    BillB
    Participant

      Completed infusion #9 along with CT scans on 1/24. Got good results today that nothing was detected. Since this is the second set of clean scans my doctor suggests stopping the infusions. I have been on Keytruda since August 10, 2017 with a fast moving melanoma that went from the temple area of my head to my lungs in 9 months (2c to 4). We had a long discussion about why I could stop and I happen to agree with him but I informed that from a mental standpoint I wasn’t ready so we agreed to continue. Anyway, a good day and as I read everyone’s posts I wish deeply the same for everyone.  Also, for those interested in side effects, starting with treatment six they alll diminished significantly. Still have some fatigue during the week after the infusion, minor skin sensitivity and some joint pain that comes and goes. Nothing significant and since the middle of December have resumed all normal activities. 

      Bill

    Viewing 6 reply threads
    • Replies
        • January 26, 2018 at 12:47 am
        Bubbles
        Participant

          Oh, that is wonderful!!!  I am so glad for you!!!  Do what you gotta do, until you feel it is right!!! love, c

          • January 26, 2018 at 3:24 am
          ed williams
          Participant

            Great news on scans, I am always curious what various Oncologists think on the subject of stopping. What was your Oncologist's thinking or argument for stopping, if you don't mind me asking? Thanks in advance!!!Ed

              • January 26, 2018 at 7:06 pm
              BillB
              Participant

                Hi Ed, sorry took so long to get back to you. I was traveling back home from NYC.  You are more than welcome to call me to discuss doctors etc but I will leave names out of the picture for right now in case I misunderstood or mischaracterize the reasoning. Celeste might also be able to chime in as I read a recent post on her site (I think) where she stated Dr. Weber would use shorter times. So, the doctor basically said they are looking into the length of time to stay on immunotherapy after clean scans are reached.  Because I had a complete response and now two clean scans he didn’t feel that additional treatments would provide me any additional benefit and the potential for serious adverse events could still occur. Since the melanoma battle was completed by my immune system (triggered, assisted by the Keytruda) and has been resolved the question is what benefit are additional infusions providing, if the immune system is not fighting anything. The conversation did stray and discuss individual cells etc but he didn’t feel there was a way to measure at that level.  He does fully recognize that currently there is nothing to support stopping treatment after receiving clean scans they are looking at it.  He also commented he couldn’t leave me on it until I’m 70, he stated that you will eventually have to go of it at some point. As stated earlier his reasoning seems sound to me but mentally I’m not sure I’m comfortable yet. I hope that explains it but please contact me if not.  I do find it hard to concentrate after receiving the results after waiting impatiently (nervously) for  a day for the results. Hopefully this sparks some additional questions by everyone on the forum. 

                Bill

                • January 27, 2018 at 12:08 am
                Bubbles
                Participant

                  Really good information, Bill.   Thanks for sharing. This IS the zillion dollar question in melanoma today.  How long should we take immunotherapy???  Yes, Weber has told me that he thinks "we", the ratties in my trial, who took nivo for 2 1/2 years "probably took it too long".  But….how long is the RIGHT duration???  We still don't really know.  Weber, and many other researchers, have noted that taking immunotherapy for a "certain" amount of time will do a body good, while longer just taps out the immune system and provides no improved benefit, and is instead, a set-up  for side effects.  Then…with all that…folks with an incomplete response have even more difficult questions and worries to address.  So…I certainly don't have an answer.  I think if I had a 'complete response' I would hesitate to stop therapy before one year.  From a VERY rough look at what researchers are talking…2 years….is looking like what they are heading toward settling on…but, you have to remember that they are likely hedging their bets on the longer end.  Melanoma sucks green hair wizard balls!!  When you consider that it is a disease than can lie dormant for 30+ years, is a regular shape shifter, and responds very differently in different folks….it is a formidible adversary indeed!  Similarly, this may be why melanoma peeps are some of the most amazing folks I have ever met!!! Hang tough!  We are the canaries in the coal mine.  Love, c

                • January 26, 2018 at 4:03 am
                TexMelanomex
                Participant

                  Hell Yes!!!! Thats great Bill! Warrior on brother, warrior on!

                   

                  • January 26, 2018 at 8:50 am
                  GeoTony
                  Participant

                    Great news Bill, stopping treatment, from the mental standpoint I totally hear you, they are trying to talk me into stopping nivo after a year as everything appears stable, I currently don't have any significant side effects so I'm happier to keep taking the bug juice, you gotta fight your corner

                    • January 26, 2018 at 4:17 pm
                    sister of patient
                    Participant

                      This is great news!! So happy for you and may all scans remain forever clear!!!

                      Barb

                      • January 26, 2018 at 9:24 pm
                      ABlazek
                      Participant

                        I love hearing such great news!!  So wonderful that you are back to normal activities and just living life.

                        Thank you for sharing your story 🙂

                          • January 28, 2018 at 6:43 am
                          CancerSpouse
                          Participant

                            Such great news! Congratulations, Bill.

                            • January 28, 2018 at 6:43 am
                            CancerSpouse
                            Participant

                              Such great news! Congratulations, Bill.

                            • January 28, 2018 at 6:09 pm
                            HopefulOne
                            Participant

                              Hi Bill. I'm with you in regard to not wanting to stop Keytruda at five months. I agree with a post below that I would shoot for at least a year of treatments with clear scans. I thought a recent study showed that going 2-1/2 years on Keytruda with no recurrence statistically showed that you should stay clear for 10 years so that's what my husband is doing. He had his 46th infusion last week. Might that be too much? Perhaps but thankfully, knock on wood, he hasn't had a recurrence on Keytruda where previously on every other treatment he did. And his side effects have been very minimal. Listen to your body/mind! Good luck. Kimberly

                                • January 28, 2018 at 7:26 pm
                                BillB
                                Participant

                                  Hi Kimberly, by any chance do you know or have a reference to the study? I’m not planning to stop.

                                  Bill

                                  • March 9, 2020 at 3:37 pm
                                  HopefulOne
                                  Participant
                                    Hi Bill – I am so sorry! I never received notification that you replied to me. How are you doing?
                                    • January 28, 2018 at 7:26 pm
                                    BillB
                                    Participant

                                      Hi Kimberly, by any chance do you know or have a reference to the study? I’m not planning to stop.

                                      Bill

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