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Going of keytruda
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Going of keytruda

› Forums › General Melanoma Community › Going of keytruda

  • Post
    • August 12, 2015 at 10:52 pm
    Jubes
    Participant

      Hi all

      my doctor and I have decided to have a go at stopping keytruda and see what happens. I will try and do 2 more infusions despite debilitating arthralgia/myalgia for which I have been on prednisone since April and trying to wean myself down. Just now on 7.5 mg per day but can't function on less. 

      I will have done one year of keytruda when I stop. Has anyone stopped keytruda and had disease progression afterwards. My lung tumour has decreased from 7.9 cm to 3 cm or less with no new mets in this year of treatment and the melanoma in my nodes has disappeared. I am assuming it will take 12 weeks or so for keytruda to wash out of my system. But just wondering when ppl stop it how long has it taken for side effects to go away?

      thanks for any info

      anne-Louise 

    Viewing 8 reply threads
    • Replies
        • August 12, 2015 at 11:02 pm
        Eileensulliv
        Participant

          Hi Anne-Louise, I have no experience in stopping meds yet, but I just wanted to wish you the very best of luck! 

          • August 12, 2015 at 11:02 pm
          Eileensulliv
          Participant

            Hi Anne-Louise, I have no experience in stopping meds yet, but I just wanted to wish you the very best of luck! 

            • August 12, 2015 at 11:02 pm
            Eileensulliv
            Participant

              Hi Anne-Louise, I have no experience in stopping meds yet, but I just wanted to wish you the very best of luck! 

              • August 13, 2015 at 12:02 am
              Bubbles
              Participant

                Hey Anne-Louise,

                Sorry you have had so many problems with arthralgias.  I didn't take Keytruda…but did take Nivo/Opdivo for 2 1/2 years.  I experienced rashes, painful lesions on my tongue, vitiligo, some wheezing and some arthralgias that waxed and waned…but nothing to the extent that you have experienced!  I never had to take prednisone…just breathing treatments typical for an asthmatic and benadryl.  The arthralgias, oral lesions and rashes came and went pretty often in my first year off the meds…but were never as bad as when I was getting treatment.  They still come and go, but less often and even less dramatically.  At this point I am:  144 months since my original melanoma.  64 months Stage IV.  56 month post my first Nivo dose.  26 months since my last dose of Nivo.  And….knock on wood…remain NED for 58 months now.  Wishing you my best.  Celeste

                • August 13, 2015 at 12:02 am
                Bubbles
                Participant

                  Hey Anne-Louise,

                  Sorry you have had so many problems with arthralgias.  I didn't take Keytruda…but did take Nivo/Opdivo for 2 1/2 years.  I experienced rashes, painful lesions on my tongue, vitiligo, some wheezing and some arthralgias that waxed and waned…but nothing to the extent that you have experienced!  I never had to take prednisone…just breathing treatments typical for an asthmatic and benadryl.  The arthralgias, oral lesions and rashes came and went pretty often in my first year off the meds…but were never as bad as when I was getting treatment.  They still come and go, but less often and even less dramatically.  At this point I am:  144 months since my original melanoma.  64 months Stage IV.  56 month post my first Nivo dose.  26 months since my last dose of Nivo.  And….knock on wood…remain NED for 58 months now.  Wishing you my best.  Celeste

                    • August 13, 2015 at 4:56 am
                    Jubes
                    Participant

                      Thanks celeste! You are an inspiration. I hope my results last as long as yours

                      • August 13, 2015 at 4:56 am
                      Jubes
                      Participant

                        Thanks celeste! You are an inspiration. I hope my results last as long as yours

                        • August 13, 2015 at 4:56 am
                        Jubes
                        Participant

                          Thanks celeste! You are an inspiration. I hope my results last as long as yours

                          • August 13, 2015 at 2:14 pm
                          Bubbles
                          Participant

                            I'm betting the will!!!  C

                            • August 13, 2015 at 2:14 pm
                            Bubbles
                            Participant

                              I'm betting the will!!!  C

                              • August 13, 2015 at 2:14 pm
                              Bubbles
                              Participant

                                I'm betting the will!!!  C

                                • March 17, 2016 at 1:55 am
                                Melaguy
                                Participant

                                  Did your Vitiligo stop spreading after you stopped treatment? Thanks, hope all stay amazing with you!

                                  • March 17, 2016 at 1:55 am
                                  Melaguy
                                  Participant

                                    Did your Vitiligo stop spreading after you stopped treatment? Thanks, hope all stay amazing with you!

                                    • March 17, 2016 at 1:55 am
                                    Melaguy
                                    Participant

                                      Did your Vitiligo stop spreading after you stopped treatment? Thanks, hope all stay amazing with you!

                                    • August 13, 2015 at 12:02 am
                                    Bubbles
                                    Participant

                                      Hey Anne-Louise,

                                      Sorry you have had so many problems with arthralgias.  I didn't take Keytruda…but did take Nivo/Opdivo for 2 1/2 years.  I experienced rashes, painful lesions on my tongue, vitiligo, some wheezing and some arthralgias that waxed and waned…but nothing to the extent that you have experienced!  I never had to take prednisone…just breathing treatments typical for an asthmatic and benadryl.  The arthralgias, oral lesions and rashes came and went pretty often in my first year off the meds…but were never as bad as when I was getting treatment.  They still come and go, but less often and even less dramatically.  At this point I am:  144 months since my original melanoma.  64 months Stage IV.  56 month post my first Nivo dose.  26 months since my last dose of Nivo.  And….knock on wood…remain NED for 58 months now.  Wishing you my best.  Celeste

                                      • August 13, 2015 at 1:03 am
                                      arthurjedi007
                                      Participant

                                        With Keytruda after the first couple weeks I had almost no side affects except an occasional low grade fever. I also was on it about 12 months. So I can't really say. But after the second dose of nivolumab it knocks my socks off every few days. Been on it since May 11. Kind of weird since they are basically the same medicine. Side affects don't seem to be getting any better either. Maybe worse especially my stomach. So it's a thought if you want to switch to nivo and maybe you'll get the almost no side affects like I had on Keytruda. I dunno. Just a thought.

                                        Artie

                                        • August 13, 2015 at 1:03 am
                                        arthurjedi007
                                        Participant

                                          With Keytruda after the first couple weeks I had almost no side affects except an occasional low grade fever. I also was on it about 12 months. So I can't really say. But after the second dose of nivolumab it knocks my socks off every few days. Been on it since May 11. Kind of weird since they are basically the same medicine. Side affects don't seem to be getting any better either. Maybe worse especially my stomach. So it's a thought if you want to switch to nivo and maybe you'll get the almost no side affects like I had on Keytruda. I dunno. Just a thought.

                                          Artie

                                            • August 13, 2015 at 4:57 am
                                            Jubes
                                            Participant

                                              Hi artie. Hope you're going well on the nivo. I know I've read it before but why did you change from keytruda to nivo?

                                              tks anne-Louise 

                                              • August 13, 2015 at 4:57 am
                                              Jubes
                                              Participant

                                                Hi artie. Hope you're going well on the nivo. I know I've read it before but why did you change from keytruda to nivo?

                                                tks anne-Louise 

                                                • August 13, 2015 at 4:57 am
                                                Jubes
                                                Participant

                                                  Hi artie. Hope you're going well on the nivo. I know I've read it before but why did you change from keytruda to nivo?

                                                  tks anne-Louise 

                                                  • August 13, 2015 at 11:51 am
                                                  arthurjedi007
                                                  Participant

                                                    They ran out of keytruda one day. So was either come back next day or switch to nivo.

                                                    Artie

                                                    • August 13, 2015 at 11:51 am
                                                    arthurjedi007
                                                    Participant

                                                      They ran out of keytruda one day. So was either come back next day or switch to nivo.

                                                      Artie

                                                      • August 13, 2015 at 11:51 am
                                                      arthurjedi007
                                                      Participant

                                                        They ran out of keytruda one day. So was either come back next day or switch to nivo.

                                                        Artie

                                                        • August 13, 2015 at 10:25 am
                                                        Thandster
                                                        Participant

                                                          Hi Artie,

                                                          when you say the Nivo really knocks your socks off, what do you mean? And what kind of stomach problems do you have?

                                                          I had my third infusion last Friday and have not felt very good since. I've been concerned that maybe this means it's no longer working. I'm not having nausea or anything, my stomach just doesn't quite feel right. 

                                                          thanks and good luck with the treatment

                                                          • August 13, 2015 at 10:25 am
                                                          Thandster
                                                          Participant

                                                            Hi Artie,

                                                            when you say the Nivo really knocks your socks off, what do you mean? And what kind of stomach problems do you have?

                                                            I had my third infusion last Friday and have not felt very good since. I've been concerned that maybe this means it's no longer working. I'm not having nausea or anything, my stomach just doesn't quite feel right. 

                                                            thanks and good luck with the treatment

                                                            • August 13, 2015 at 10:25 am
                                                            Thandster
                                                            Participant

                                                              Hi Artie,

                                                              when you say the Nivo really knocks your socks off, what do you mean? And what kind of stomach problems do you have?

                                                              I had my third infusion last Friday and have not felt very good since. I've been concerned that maybe this means it's no longer working. I'm not having nausea or anything, my stomach just doesn't quite feel right. 

                                                              thanks and good luck with the treatment

                                                              • August 13, 2015 at 12:04 pm
                                                              arthurjedi007
                                                              Participant

                                                                Some days I just feel crummy. Not quite like having the flu but similar. On those days lots of fatigue. My stomach is like you say just not quite right. Pretty much all the time with the stomach . I'll eat a couple bites and feel full. Have to slowly take about an hour to get a small portion down. It's queezy. But I've only thrown up once which was over a month ago. I'm trying to do the usual several small meals and things like the nurses say. I guess I just got used to keytruda for so long it was like taking nothing for me anyway whereas this has these few sideaffects. Nothing like zelboraf though that was really awful sideaffects for me.

                                                                Dont know if it doesn't mean it's not working. I don't think so though cause my head MRI last week was pretty good. No new stuff and the one I have pressing on the brain only grew maybe by point 2 cm in 8 months. either that or it shrank and grew and is about the same. Will know for sure in a couple weeks when my doc gets a copy of the NIH scans. He also said if there was anything of concern in the ct they would have said so will know from him in a couple weeks. Concern would be new stuff or rapid growth so I think it's working about the same or better than keytruda. Just has more side affects for me.

                                                                Artie

                                                                • August 13, 2015 at 12:04 pm
                                                                arthurjedi007
                                                                Participant

                                                                  Some days I just feel crummy. Not quite like having the flu but similar. On those days lots of fatigue. My stomach is like you say just not quite right. Pretty much all the time with the stomach . I'll eat a couple bites and feel full. Have to slowly take about an hour to get a small portion down. It's queezy. But I've only thrown up once which was over a month ago. I'm trying to do the usual several small meals and things like the nurses say. I guess I just got used to keytruda for so long it was like taking nothing for me anyway whereas this has these few sideaffects. Nothing like zelboraf though that was really awful sideaffects for me.

                                                                  Dont know if it doesn't mean it's not working. I don't think so though cause my head MRI last week was pretty good. No new stuff and the one I have pressing on the brain only grew maybe by point 2 cm in 8 months. either that or it shrank and grew and is about the same. Will know for sure in a couple weeks when my doc gets a copy of the NIH scans. He also said if there was anything of concern in the ct they would have said so will know from him in a couple weeks. Concern would be new stuff or rapid growth so I think it's working about the same or better than keytruda. Just has more side affects for me.

                                                                  Artie

                                                                  • August 13, 2015 at 12:04 pm
                                                                  arthurjedi007
                                                                  Participant

                                                                    Some days I just feel crummy. Not quite like having the flu but similar. On those days lots of fatigue. My stomach is like you say just not quite right. Pretty much all the time with the stomach . I'll eat a couple bites and feel full. Have to slowly take about an hour to get a small portion down. It's queezy. But I've only thrown up once which was over a month ago. I'm trying to do the usual several small meals and things like the nurses say. I guess I just got used to keytruda for so long it was like taking nothing for me anyway whereas this has these few sideaffects. Nothing like zelboraf though that was really awful sideaffects for me.

                                                                    Dont know if it doesn't mean it's not working. I don't think so though cause my head MRI last week was pretty good. No new stuff and the one I have pressing on the brain only grew maybe by point 2 cm in 8 months. either that or it shrank and grew and is about the same. Will know for sure in a couple weeks when my doc gets a copy of the NIH scans. He also said if there was anything of concern in the ct they would have said so will know from him in a couple weeks. Concern would be new stuff or rapid growth so I think it's working about the same or better than keytruda. Just has more side affects for me.

                                                                    Artie

                                                                    • August 13, 2015 at 12:40 pm
                                                                    Jubes
                                                                    Participant

                                                                      That's great artie! Hope it keeps those mets small or gets rid of them! Thanks for your answer 

                                                                      • August 13, 2015 at 12:40 pm
                                                                      Jubes
                                                                      Participant

                                                                        That's great artie! Hope it keeps those mets small or gets rid of them! Thanks for your answer 

                                                                        • August 13, 2015 at 12:40 pm
                                                                        Jubes
                                                                        Participant

                                                                          That's great artie! Hope it keeps those mets small or gets rid of them! Thanks for your answer 

                                                                          • August 14, 2015 at 3:06 am
                                                                          DianaD
                                                                          Participant

                                                                            Artie, you may want to give ginger a try for its anti-nause effects.  I find the candy losenges to be very effective.  

                                                                            • August 14, 2015 at 3:06 am
                                                                            DianaD
                                                                            Participant

                                                                              Artie, you may want to give ginger a try for its anti-nause effects.  I find the candy losenges to be very effective.  

                                                                              • August 14, 2015 at 3:06 am
                                                                              DianaD
                                                                              Participant

                                                                                Artie, you may want to give ginger a try for its anti-nause effects.  I find the candy losenges to be very effective.  

                                                                              • August 13, 2015 at 1:03 am
                                                                              arthurjedi007
                                                                              Participant

                                                                                With Keytruda after the first couple weeks I had almost no side affects except an occasional low grade fever. I also was on it about 12 months. So I can't really say. But after the second dose of nivolumab it knocks my socks off every few days. Been on it since May 11. Kind of weird since they are basically the same medicine. Side affects don't seem to be getting any better either. Maybe worse especially my stomach. So it's a thought if you want to switch to nivo and maybe you'll get the almost no side affects like I had on Keytruda. I dunno. Just a thought.

                                                                                Artie

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