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people on/have been on keytruda

Forums General Melanoma Community people on/have been on keytruda

  • Post
    csellers23
    Participant
      Got first dose of keytruda. Wanting to know what side effects you got, the more doses you got. Did they get worse, how long till you knew it was or wasnt working also im on taf pill. I had mixed results with the taf/mek combo so they took me off that . but put me back on taf after new met were found on the brain and keytruda,, and did anyones tumors get bigger before they got smaller. I am haveing pain all o ver even with pain meds, even the bottom of my feet hurt! Worse in morning and right after i take pain meds but i d i nt know if its from taf ir keytruda. Thank you sorry for typos my phone is acting up.
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    • Replies
        Owl
        Participant

          My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!

          The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.

          Wish you all the best, Jenny

          Owl
          Participant

            My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!

            The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.

            Wish you all the best, Jenny

            Owl
            Participant

              My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!

              The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.

              Wish you all the best, Jenny

              arthurjedi007
              Participant

                I started keytruda on May 21. First ten days I was very groggy and had low fevers and chills. Then day 11 everything cleared up. Since then have low grade fevers and brief chills occasionally.

                Had pains long before keytruda cause lots of bone tumors. In November had to start taking pain stuff cause the huge 10 x 9 in shoulder started growing again.

                ive had mixed results with keytruda. August scan showed 19 tumors shrinking, 4 stayed same and 7 growing. The big growing one in shoulder has a decent chunk of it go necrotic. Could tell keytruda was working on it cause could move it a little better without hurting as much. November was a way less detailed report just said some tumors have had mild growth and said the new size of shoulder tumor. Head mri in December showed 2 tumors that had not been radiated were virtually gone. The one that was radiated was about same size. Next Tuesday im supposed to get dose 14. So for me I wouldn't still be here without keytruda but by itself it is not enough.

                For the pain you are describing that sounds like what they said could happen when I was on zelboraf but I got over two dozen other side affects but not that one.

                Artie

                arthurjedi007
                Participant

                  I started keytruda on May 21. First ten days I was very groggy and had low fevers and chills. Then day 11 everything cleared up. Since then have low grade fevers and brief chills occasionally.

                  Had pains long before keytruda cause lots of bone tumors. In November had to start taking pain stuff cause the huge 10 x 9 in shoulder started growing again.

                  ive had mixed results with keytruda. August scan showed 19 tumors shrinking, 4 stayed same and 7 growing. The big growing one in shoulder has a decent chunk of it go necrotic. Could tell keytruda was working on it cause could move it a little better without hurting as much. November was a way less detailed report just said some tumors have had mild growth and said the new size of shoulder tumor. Head mri in December showed 2 tumors that had not been radiated were virtually gone. The one that was radiated was about same size. Next Tuesday im supposed to get dose 14. So for me I wouldn't still be here without keytruda but by itself it is not enough.

                  For the pain you are describing that sounds like what they said could happen when I was on zelboraf but I got over two dozen other side affects but not that one.

                  Artie

                  arthurjedi007
                  Participant

                    I started keytruda on May 21. First ten days I was very groggy and had low fevers and chills. Then day 11 everything cleared up. Since then have low grade fevers and brief chills occasionally.

                    Had pains long before keytruda cause lots of bone tumors. In November had to start taking pain stuff cause the huge 10 x 9 in shoulder started growing again.

                    ive had mixed results with keytruda. August scan showed 19 tumors shrinking, 4 stayed same and 7 growing. The big growing one in shoulder has a decent chunk of it go necrotic. Could tell keytruda was working on it cause could move it a little better without hurting as much. November was a way less detailed report just said some tumors have had mild growth and said the new size of shoulder tumor. Head mri in December showed 2 tumors that had not been radiated were virtually gone. The one that was radiated was about same size. Next Tuesday im supposed to get dose 14. So for me I wouldn't still be here without keytruda but by itself it is not enough.

                    For the pain you are describing that sounds like what they said could happen when I was on zelboraf but I got over two dozen other side affects but not that one.

                    Artie

                    sweetaugust
                    Participant

                      Hi Crystale,

                      You can click on my sweetaugust name and view my profile and it will tell you all about my 2+ years on Keytruda.  I started in Oct 2012 and am still on the trial.  Had a good response right away, but also had a slow-to-respond node that was aggressive.   It finally responded 6 months into the trial.  Then all shrank down to nothing and I'm still doing great.

                      All my best to you, Laurie

                      sweetaugust
                      Participant

                        Hi Crystale,

                        You can click on my sweetaugust name and view my profile and it will tell you all about my 2+ years on Keytruda.  I started in Oct 2012 and am still on the trial.  Had a good response right away, but also had a slow-to-respond node that was aggressive.   It finally responded 6 months into the trial.  Then all shrank down to nothing and I'm still doing great.

                        All my best to you, Laurie

                        sweetaugust
                        Participant

                          Hi Crystale,

                          You can click on my sweetaugust name and view my profile and it will tell you all about my 2+ years on Keytruda.  I started in Oct 2012 and am still on the trial.  Had a good response right away, but also had a slow-to-respond node that was aggressive.   It finally responded 6 months into the trial.  Then all shrank down to nothing and I'm still doing great.

                          All my best to you, Laurie

                            AnitaLoree
                            Participant

                              My husband started Keytruda as soon as it was FDA approved in 9/14.  He has only one mel site in his cervical spinal cord which was partially resected 10/13, then focused beam radiation 2/14. Otherwise, treatment naive. He is on his 7th infusion.  Noticed fatigue for few days initially after each infusion; itching has become more noticeable and continuous as he has reached drug steady state this past month.  Otherwise, holding steady, no abnormal labs, no tumor growth, no new neurological symptoms.  Hard to read the MRI for tumor shrinkage because of location & small size, residual blood products from surgery and scarring from radiation.  Time will tell. He is very glad/grateful to still be alive.  Hope this is helpful and that your pain issue is very soon under control. A.L.

                              tschmith
                              Participant

                                In a couple of weeks I'll get my 12th infusion of Keytruda.  So far, it is working well for me.  Tumors are either shrinking or have resolved. I had a fairly high tumor burden. After the first infusion I had fevers, fatigue, and a very itchy rash.  Following the rest of the infusions, I've only had to deal with fatigue and some vitaligo.  My eyelashes and eyebrows turned white.  My freckles have pretty much disappeared and I get red patches on my skin that come and go.  It's really been very easy to tolerate and like Artie said, I probably wouldn't be here now without it.  

                                Good luck to you!

                                Terrie

                                tschmith
                                Participant

                                  In a couple of weeks I'll get my 12th infusion of Keytruda.  So far, it is working well for me.  Tumors are either shrinking or have resolved. I had a fairly high tumor burden. After the first infusion I had fevers, fatigue, and a very itchy rash.  Following the rest of the infusions, I've only had to deal with fatigue and some vitaligo.  My eyelashes and eyebrows turned white.  My freckles have pretty much disappeared and I get red patches on my skin that come and go.  It's really been very easy to tolerate and like Artie said, I probably wouldn't be here now without it.  

                                  Good luck to you!

                                  Terrie

                                  tschmith
                                  Participant

                                    In a couple of weeks I'll get my 12th infusion of Keytruda.  So far, it is working well for me.  Tumors are either shrinking or have resolved. I had a fairly high tumor burden. After the first infusion I had fevers, fatigue, and a very itchy rash.  Following the rest of the infusions, I've only had to deal with fatigue and some vitaligo.  My eyelashes and eyebrows turned white.  My freckles have pretty much disappeared and I get red patches on my skin that come and go.  It's really been very easy to tolerate and like Artie said, I probably wouldn't be here now without it.  

                                    Good luck to you!

                                    Terrie

                                    AnitaLoree
                                    Participant

                                      My husband started Keytruda as soon as it was FDA approved in 9/14.  He has only one mel site in his cervical spinal cord which was partially resected 10/13, then focused beam radiation 2/14. Otherwise, treatment naive. He is on his 7th infusion.  Noticed fatigue for few days initially after each infusion; itching has become more noticeable and continuous as he has reached drug steady state this past month.  Otherwise, holding steady, no abnormal labs, no tumor growth, no new neurological symptoms.  Hard to read the MRI for tumor shrinkage because of location & small size, residual blood products from surgery and scarring from radiation.  Time will tell. He is very glad/grateful to still be alive.  Hope this is helpful and that your pain issue is very soon under control. A.L.

                                      AnitaLoree
                                      Participant

                                        My husband started Keytruda as soon as it was FDA approved in 9/14.  He has only one mel site in his cervical spinal cord which was partially resected 10/13, then focused beam radiation 2/14. Otherwise, treatment naive. He is on his 7th infusion.  Noticed fatigue for few days initially after each infusion; itching has become more noticeable and continuous as he has reached drug steady state this past month.  Otherwise, holding steady, no abnormal labs, no tumor growth, no new neurological symptoms.  Hard to read the MRI for tumor shrinkage because of location & small size, residual blood products from surgery and scarring from radiation.  Time will tell. He is very glad/grateful to still be alive.  Hope this is helpful and that your pain issue is very soon under control. A.L.

                                      Jubes
                                      Participant

                                        I started Keytruda on 15 Sept 2014 and have just had cycle 8. I went on holiday after the first infusion as my doctor said it would be unusual for the bad side effects to kick in in the first couple of weeks. Also I had had  two of cycles of Ipi and had tolerated that ok. At the time I had a 6cm mass in my lung and three or four melanoma spots in my chest. My doctors were mostly worried about the digestive system and told me to call immediately if I had diarrhea. 

                                        So I remember going to my oncologist appointment on Oct 2 and he said straight away. 'you look like you have a spring in your step' and it was true. It started working after 3 weeks! I started to feel like cooking again and my cough was improving although I was still coughing up stuff. Two weeks ago I had a scan which shows the tumour in my lung reduced by 30-40% to 3 cm and my chest nodes are almost back to normal. I only cough in the mornings now.

                                        As far as side effects, the biggest is that my thyroid is shot now, so I will take thyroid tablets for the rest of my life. They are still monitoring the adrenal and pituitary glands. I also get tired for no reason. It has slowed me down a bit. I have a rash which I have treated with small amount of a steroid cream, very sparingly as it can affect your immune system which we are trying to boost. It seems when I clear the rash up somewhere it pops up somewhere else. In general my side effects have not really changed from the beginning except for gradual deterioration of the thyroid. Even the rash with Keytruda is not as bad as the rash with Ipi.

                                        Hope your pain eases up. I know they have done lots of trials here for ppl with brain mets where they give (I think) an infusion of 1 mg per kilo ipi and 3 mg per kilo nivo every three weeks. My keytruda takes 30 mins but I have a friend (next door neighbour can you believe it!) who is on the trial and his takes 3 hours.

                                         

                                        Jubes
                                        Participant

                                          I started Keytruda on 15 Sept 2014 and have just had cycle 8. I went on holiday after the first infusion as my doctor said it would be unusual for the bad side effects to kick in in the first couple of weeks. Also I had had  two of cycles of Ipi and had tolerated that ok. At the time I had a 6cm mass in my lung and three or four melanoma spots in my chest. My doctors were mostly worried about the digestive system and told me to call immediately if I had diarrhea. 

                                          So I remember going to my oncologist appointment on Oct 2 and he said straight away. 'you look like you have a spring in your step' and it was true. It started working after 3 weeks! I started to feel like cooking again and my cough was improving although I was still coughing up stuff. Two weeks ago I had a scan which shows the tumour in my lung reduced by 30-40% to 3 cm and my chest nodes are almost back to normal. I only cough in the mornings now.

                                          As far as side effects, the biggest is that my thyroid is shot now, so I will take thyroid tablets for the rest of my life. They are still monitoring the adrenal and pituitary glands. I also get tired for no reason. It has slowed me down a bit. I have a rash which I have treated with small amount of a steroid cream, very sparingly as it can affect your immune system which we are trying to boost. It seems when I clear the rash up somewhere it pops up somewhere else. In general my side effects have not really changed from the beginning except for gradual deterioration of the thyroid. Even the rash with Keytruda is not as bad as the rash with Ipi.

                                          Hope your pain eases up. I know they have done lots of trials here for ppl with brain mets where they give (I think) an infusion of 1 mg per kilo ipi and 3 mg per kilo nivo every three weeks. My keytruda takes 30 mins but I have a friend (next door neighbour can you believe it!) who is on the trial and his takes 3 hours.

                                           

                                          Jubes
                                          Participant

                                            I started Keytruda on 15 Sept 2014 and have just had cycle 8. I went on holiday after the first infusion as my doctor said it would be unusual for the bad side effects to kick in in the first couple of weeks. Also I had had  two of cycles of Ipi and had tolerated that ok. At the time I had a 6cm mass in my lung and three or four melanoma spots in my chest. My doctors were mostly worried about the digestive system and told me to call immediately if I had diarrhea. 

                                            So I remember going to my oncologist appointment on Oct 2 and he said straight away. 'you look like you have a spring in your step' and it was true. It started working after 3 weeks! I started to feel like cooking again and my cough was improving although I was still coughing up stuff. Two weeks ago I had a scan which shows the tumour in my lung reduced by 30-40% to 3 cm and my chest nodes are almost back to normal. I only cough in the mornings now.

                                            As far as side effects, the biggest is that my thyroid is shot now, so I will take thyroid tablets for the rest of my life. They are still monitoring the adrenal and pituitary glands. I also get tired for no reason. It has slowed me down a bit. I have a rash which I have treated with small amount of a steroid cream, very sparingly as it can affect your immune system which we are trying to boost. It seems when I clear the rash up somewhere it pops up somewhere else. In general my side effects have not really changed from the beginning except for gradual deterioration of the thyroid. Even the rash with Keytruda is not as bad as the rash with Ipi.

                                            Hope your pain eases up. I know they have done lots of trials here for ppl with brain mets where they give (I think) an infusion of 1 mg per kilo ipi and 3 mg per kilo nivo every three weeks. My keytruda takes 30 mins but I have a friend (next door neighbour can you believe it!) who is on the trial and his takes 3 hours.

                                             

                                            Butchie1
                                            Participant

                                              I've had 3 Ketruda treatments. I get a 4th one in a few weeks. Then the Onocologist will give me another PET scan to see if the spot in my lung is shrinking. I have tumors going up my shinbone on my leg from the original incision site that seem to be swelling up bigger. I heard that was normal but I don't know. I've been experiencing a little bit of a cough. But thats mostly at night when I go to bed. Trying to keep a positive attitude, as this is my 4th year with metastatic melanoma, and the Dr. told me people like me usually don't live past 5 years with this disease. We'll see.

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