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Question for people who have responded well to anti pd-1 drug

Forums General Melanoma Community Question for people who have responded well to anti pd-1 drug

  • Post
    Josh
    Participant

      Hello,

       

      Hello,

       

      I'm currently eight weeks (2 infusions) into the Merck Anti pd-1 trial, and my symptoms are getting much worse (crazy pain in knee tumor, night sweats, groin mets getting larger).  I'm writing because I really feel like things are going downhill quickly so I'm considering going off the trial and getting on some other treatment, however, I know that this pd-1 treatment is among the most promising out there. So, for people who have responded well on an anti pd-1 trial, my question is did any of you get worse after the starting the pd-1 infusions, only to suddenly get better? In other words, did anyone feel like the drug wasn't working, only to have it start working after the 3rd or 4th or 5th infusion? Thanks a lot everyone!    

    Viewing 17 reply threads
    • Replies
        sharmon
        Participant

          I am also 2 infusions out on ths Merck trial , here in Tampa.  No signs of growth or night sweats. I am dealing with pain in that area of the chest, but they also found two fractured ribs and I believe that is causing the pain.  I am interested in what responses you get as well.  Not knowing if it is working or not. Like you I feel that this is the lastest and greatest and would like to continue treatment.   I did try IPI early on and IPI caused inflamation that appeared as growth early on in the trial and this being close to IPI in structure it may be  a repeat situation in your case.,  I would at least wait for the scans before discontinuing treatmemt but always  check with your doctor first.

          sharmon
          Participant

            I am also 2 infusions out on ths Merck trial , here in Tampa.  No signs of growth or night sweats. I am dealing with pain in that area of the chest, but they also found two fractured ribs and I believe that is causing the pain.  I am interested in what responses you get as well.  Not knowing if it is working or not. Like you I feel that this is the lastest and greatest and would like to continue treatment.   I did try IPI early on and IPI caused inflamation that appeared as growth early on in the trial and this being close to IPI in structure it may be  a repeat situation in your case.,  I would at least wait for the scans before discontinuing treatmemt but always  check with your doctor first.

            sharmon
            Participant

              I am also 2 infusions out on ths Merck trial , here in Tampa.  No signs of growth or night sweats. I am dealing with pain in that area of the chest, but they also found two fractured ribs and I believe that is causing the pain.  I am interested in what responses you get as well.  Not knowing if it is working or not. Like you I feel that this is the lastest and greatest and would like to continue treatment.   I did try IPI early on and IPI caused inflamation that appeared as growth early on in the trial and this being close to IPI in structure it may be  a repeat situation in your case.,  I would at least wait for the scans before discontinuing treatmemt but always  check with your doctor first.

              killmel
              Participant

                I am on Merck PD1 in Texas. After my ""4th"infusion, my tumors started shrinking.At my first 12 week scans, I was cancer free. All my tumors, sub-q's & in my organs has disappeared by 12 week scans. Been cancer free since my 12 week cans. My side effects are fatigue, rash, & joint & muscle pain. Good Luck

                killmel
                Participant

                  I am on Merck PD1 in Texas. After my ""4th"infusion, my tumors started shrinking.At my first 12 week scans, I was cancer free. All my tumors, sub-q's & in my organs has disappeared by 12 week scans. Been cancer free since my 12 week cans. My side effects are fatigue, rash, & joint & muscle pain. Good Luck

                  killmel
                  Participant

                    I am on Merck PD1 in Texas. After my ""4th"infusion, my tumors started shrinking.At my first 12 week scans, I was cancer free. All my tumors, sub-q's & in my organs has disappeared by 12 week scans. Been cancer free since my 12 week cans. My side effects are fatigue, rash, & joint & muscle pain. Good Luck

                    killmel
                    Participant

                      Josh, I forgot to ask you in my post, how often do you get infusions??? 

                      You said:

                      "I'm currently eight weeks (2 infusions) into the Merck Anti pd-1 trial"

                      Do you get infusions every 4 weeks??

                      killmel
                      Participant

                        Josh, I forgot to ask you in my post, how often do you get infusions??? 

                        You said:

                        "I'm currently eight weeks (2 infusions) into the Merck Anti pd-1 trial"

                        Do you get infusions every 4 weeks??

                        killmel
                        Participant

                          Josh, I forgot to ask you in my post, how often do you get infusions??? 

                          You said:

                          "I'm currently eight weeks (2 infusions) into the Merck Anti pd-1 trial"

                          Do you get infusions every 4 weeks??

                          palmspringswalt
                          Participant

                            I've been in the Merck anti PD-1 trial since March.  My only symptom was discomfort in my groin due to many swollen lymph nodes.  It gradually disappeared over the first 2 months or so.  At my 12th week scan all lymph nodes and one met had reduced.  The total load reduction was 87%.  I had 2 side effects for several weeks later in the trial – minor rash and fatigue.  If you have not read it, suggest you go to the Merck website and read the first published preliminary results of their Phase I trial.  If you will have 12 week scans, you will have a more objective picture of what's happening.  I would suggest you talk with your oncologist.  

                            palmspringswalt
                            Participant

                              I've been in the Merck anti PD-1 trial since March.  My only symptom was discomfort in my groin due to many swollen lymph nodes.  It gradually disappeared over the first 2 months or so.  At my 12th week scan all lymph nodes and one met had reduced.  The total load reduction was 87%.  I had 2 side effects for several weeks later in the trial – minor rash and fatigue.  If you have not read it, suggest you go to the Merck website and read the first published preliminary results of their Phase I trial.  If you will have 12 week scans, you will have a more objective picture of what's happening.  I would suggest you talk with your oncologist.  

                                POW
                                Participant

                                  The Merck press release about the Phase 1 trial of MK-3475 says, in part:

                                  "Data has so far been obtained for 85 of the 132 patients enrolled in the study. Of those patients, a total of 43 patients (51 percent) showed an objective anti-tumor response, and of those, 8 patients (9 percent) showed a complete response at or after the 12-week assessment. Notably, of the 27 patients who had previously been treated with ipilimumab monotherapy, the current standard of care for late-stage melanoma, 11 patients (41 percent) showed an objective anti-tumor response to MK-3475 monotherapy; none of those patients showed a complete response.

                                  The most common adverse events experienced by patients who received MK-3475 included fatigue, rash, diarrhea, nausea, cough, joint pain, fever and itching. Seven MK-3475 related Grade 3/4 adverse events were reported as potentially “immune related.”"

                                  They just started a Phase II trial (NCT01704287). Unfortunately, the control arm is old-fashioned, toxic,  ineffective chemo. Why couldn't they use Ipi as the control arm?! At least give the control group a fighting chance! Competition and rivalry between pharmaceutical companies, I guess. That stinks!

                                  POW
                                  Participant

                                    The Merck press release about the Phase 1 trial of MK-3475 says, in part:

                                    "Data has so far been obtained for 85 of the 132 patients enrolled in the study. Of those patients, a total of 43 patients (51 percent) showed an objective anti-tumor response, and of those, 8 patients (9 percent) showed a complete response at or after the 12-week assessment. Notably, of the 27 patients who had previously been treated with ipilimumab monotherapy, the current standard of care for late-stage melanoma, 11 patients (41 percent) showed an objective anti-tumor response to MK-3475 monotherapy; none of those patients showed a complete response.

                                    The most common adverse events experienced by patients who received MK-3475 included fatigue, rash, diarrhea, nausea, cough, joint pain, fever and itching. Seven MK-3475 related Grade 3/4 adverse events were reported as potentially “immune related.”"

                                    They just started a Phase II trial (NCT01704287). Unfortunately, the control arm is old-fashioned, toxic,  ineffective chemo. Why couldn't they use Ipi as the control arm?! At least give the control group a fighting chance! Competition and rivalry between pharmaceutical companies, I guess. That stinks!

                                    POW
                                    Participant

                                      The Merck press release about the Phase 1 trial of MK-3475 says, in part:

                                      "Data has so far been obtained for 85 of the 132 patients enrolled in the study. Of those patients, a total of 43 patients (51 percent) showed an objective anti-tumor response, and of those, 8 patients (9 percent) showed a complete response at or after the 12-week assessment. Notably, of the 27 patients who had previously been treated with ipilimumab monotherapy, the current standard of care for late-stage melanoma, 11 patients (41 percent) showed an objective anti-tumor response to MK-3475 monotherapy; none of those patients showed a complete response.

                                      The most common adverse events experienced by patients who received MK-3475 included fatigue, rash, diarrhea, nausea, cough, joint pain, fever and itching. Seven MK-3475 related Grade 3/4 adverse events were reported as potentially “immune related.”"

                                      They just started a Phase II trial (NCT01704287). Unfortunately, the control arm is old-fashioned, toxic,  ineffective chemo. Why couldn't they use Ipi as the control arm?! At least give the control group a fighting chance! Competition and rivalry between pharmaceutical companies, I guess. That stinks!

                                    palmspringswalt
                                    Participant

                                      I've been in the Merck anti PD-1 trial since March.  My only symptom was discomfort in my groin due to many swollen lymph nodes.  It gradually disappeared over the first 2 months or so.  At my 12th week scan all lymph nodes and one met had reduced.  The total load reduction was 87%.  I had 2 side effects for several weeks later in the trial – minor rash and fatigue.  If you have not read it, suggest you go to the Merck website and read the first published preliminary results of their Phase I trial.  If you will have 12 week scans, you will have a more objective picture of what's happening.  I would suggest you talk with your oncologist.  

                                      audgator
                                      Participant

                                        My mets grew on ipi but they have continuously shrunk on a BMS arm at Moffitt.  Keep in mind you are asking for anecdotal reports from lay persons…very interested, experienced, and committed lay persons….but still lay persons without all the facts.  Best wishes. I hope you see a reversal SOON.   Dan

                                        audgator
                                        Participant

                                          My mets grew on ipi but they have continuously shrunk on a BMS arm at Moffitt.  Keep in mind you are asking for anecdotal reports from lay persons…very interested, experienced, and committed lay persons….but still lay persons without all the facts.  Best wishes. I hope you see a reversal SOON.   Dan

                                          audgator
                                          Participant

                                            My mets grew on ipi but they have continuously shrunk on a BMS arm at Moffitt.  Keep in mind you are asking for anecdotal reports from lay persons…very interested, experienced, and committed lay persons….but still lay persons without all the facts.  Best wishes. I hope you see a reversal SOON.   Dan

                                            Josh
                                            Participant

                                              Thanks a lot for the help, everyone! Like most people here, I've found this forum extremely helpful. In response to some of the feedback on my question, I should say that I've definitely been in contact with my oncologist, who I love (in a doctorly way). It's just that this drug is still new enough that knowledge about exactly when the drug kicks in is still pretty limited to the twelve week scan mark. I guess I was hoping to hear other people say that they were cleary getting worse until week 10 or something. Though only, of course, if it was true ๐Ÿ™‚

                                               

                                              Thanks again, everyone!

                                               

                                              Josh
                                              Participant

                                                Thanks a lot for the help, everyone! Like most people here, I've found this forum extremely helpful. In response to some of the feedback on my question, I should say that I've definitely been in contact with my oncologist, who I love (in a doctorly way). It's just that this drug is still new enough that knowledge about exactly when the drug kicks in is still pretty limited to the twelve week scan mark. I guess I was hoping to hear other people say that they were cleary getting worse until week 10 or something. Though only, of course, if it was true ๐Ÿ™‚

                                                 

                                                Thanks again, everyone!

                                                 

                                                  donnafinn
                                                  Participant

                                                    Hello to all:

                                                    i will be receiving my 9th anti pd1 on Monday at Beth Israel Deaconess in Boston.  I go every other week and I am o the highest dose they are allowing at this time.  I had an immediate and positive response after the first infusion.  

                                                    I now have 72 % less cancer in my system. Some new cancer has shown up in my hip area bur nothing to be concerned about right now.  For me, it is a miracle drug.  IPY-3 did not work for me at all.  In fact my cancer had spread while o the drug. 

                                                    The fatigue is a very real side effect. It has prevented me from returning to my teaching position that I love. The rash is intermittent and the joint pain has been managed by taking Triple-flex and Advil.  

                                                    I wish you all success on this great drug and a better new year. I'm not usually wishing my time away but I'm not upset about seeing 2013 gone.

                                                    DMarie

                                                     

                                                     

                                                     

                                                    sweetaugust
                                                    Participant

                                                      Hi there,

                                                      I appear to be a little late to the party, but it was nice to see this forum party all the same.  My melanoma metastesized to a lymph node in my right arm pit in Sept 2012 at 39 yrs old.  The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.

                                                      I started MK-3475 (highest dose – every 3 weeks) Oct 31, 2012…and it is now March 21, 2014 and i am doing great.  I am at Dana Farber in Boston.

                                                      At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared.  But the met node was aggressive and doubled in size.  At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was two days ago and my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.

                                                      Side effects for me:  Living a basically normal life.  Still working fulltime and feeling good.  Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up.  Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months.  I get a little fatigue, but really that is probably just from working and my social life.  I just started getting joint pain this week in my hip and shoulder. 

                                                      Otherwise all is great.  I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

                                                      How are you all doing over time?  I still have never met anyone else on MK-3475.  I think there are 12 of us in Boston, but I could be wrong.

                                                      Laurie

                                                      cherylobrien
                                                      Participant

                                                        Hi Laurie,

                                                        I am glad you are doing so well and that MK 3475 is working for you.  My husband, diagnosed in May 2013 with stage lV melanoma metastisized to his brain (unknown origin) is also at Dana Farber.  After a temporal lobe resection on the right last May and another one on the left side this May, he had whole brain radiation this June and is now on MK 3475 every three weeks.  (Ippi seemed to work but then didn't) He has one mass in his small intestine now and that's why they started the MK 3475 in August.  He has had 3 infusions so far.  He has the nasea and joint pain and because of the location of the mass in his intestine has a lot of pain in that area.  He was ready to stop the infusions but after reading how things may change and get better after a few more he has decided to definately continue. Because he works in construction he has been unable to work since May.  Hearing how good the infusions have worked for you we are hopeful that he may start to respond as well.  As allways we will dread the upcoming scans next month after his next infusion, but hopefully the tumor will start to shrink and maybe no new ones will appear.

                                                        If anyone else has anything they want to share about being on MK 3475 I would really like to hear about it.

                                                        Cheryl

                                                        sweetaugust
                                                        Participant

                                                          Hi Cheryl,

                                                          This whole Melanoma world is so crazy.  The one thing I do know is that we all are so different and we all react differently to drugs.  I know that as an adult, I am extremely sensitive to adult medications and I am allergic to many different drugs.  This made it so I was very concerned about trying any new drug. 

                                                          I am not only quite lucky to have been given the opportunity to go on MK-3475, but to have had such great results from it as well without any bad side effects.  I know back when I started, I only knew that I was offered 3 different treatment plan options…Yervoy, Zelboraf, or if I qualified, the MK-3475 trial.  And I chose the drug trial because it listed the least amount of bad side-effects.  

                                                          I, like everyone else, had no idea what I was in for.  Not even the doctors really knew what to expect.  So after scanning at the 12 week mark, they were concerned as to whether it was really working for me because yes, all the other spots and mass on my liver had disappeared, which was amazing news, but the bad node that got me into the trial doubled in size.   After the 12 week scan, they didn't have  much else to go off of for those next 12 weeks before I scanned again.  All they were going off of was that they could physically feel that the node was getting bigger to the touch.  So they were worried and kept thinking that maybe they needed to stop treatment and I should go into surgery to remove that one bad node that was so aggressive. But my mum kept pushing them to give me more time on the drug.  She really felt it just need more time to turn that aggressive one around. 

                                                          And a week before my next 12 week scan, that bad node blew up and died.  It was quite painful (like I was being stabbed in the arm pit every 5-10 seconds for 24 hours and it blew up so that it was like a baseball hanging out of me for two days.)  But that is when the doctors finally felt the treatment was indeed working.  And I scanned the next week and yes, the bad node had blown-up and then liquified….which they said meant it was dying. 

                                                          So for me, it worked to continue to stay on the drug.  And now that node is only the size of my thumbnail…which is almost normal size.  I feel fine and am able to work everyday.  I am actually so much healthier than I was before I received this diagnosis….but I attribute that to my healthy changes in diet that I started a couple weeks after getting my diagnosis, so I could help my body as much as possible.  And I truly think that was a big win for me.

                                                          Good luck with your decisions and I hope that your husbands body ends up responding very well to MK-3475.

                                                          All my best,

                                                          Laurie

                                                          sweetaugust
                                                          Participant

                                                            Hi Cheryl,

                                                            This whole Melanoma world is so crazy.  The one thing I do know is that we all are so different and we all react differently to drugs.  I know that as an adult, I am extremely sensitive to adult medications and I am allergic to many different drugs.  This made it so I was very concerned about trying any new drug. 

                                                            I am not only quite lucky to have been given the opportunity to go on MK-3475, but to have had such great results from it as well without any bad side effects.  I know back when I started, I only knew that I was offered 3 different treatment plan options…Yervoy, Zelboraf, or if I qualified, the MK-3475 trial.  And I chose the drug trial because it listed the least amount of bad side-effects.  

                                                            I, like everyone else, had no idea what I was in for.  Not even the doctors really knew what to expect.  So after scanning at the 12 week mark, they were concerned as to whether it was really working for me because yes, all the other spots and mass on my liver had disappeared, which was amazing news, but the bad node that got me into the trial doubled in size.   After the 12 week scan, they didn't have  much else to go off of for those next 12 weeks before I scanned again.  All they were going off of was that they could physically feel that the node was getting bigger to the touch.  So they were worried and kept thinking that maybe they needed to stop treatment and I should go into surgery to remove that one bad node that was so aggressive. But my mum kept pushing them to give me more time on the drug.  She really felt it just need more time to turn that aggressive one around. 

                                                            And a week before my next 12 week scan, that bad node blew up and died.  It was quite painful (like I was being stabbed in the arm pit every 5-10 seconds for 24 hours and it blew up so that it was like a baseball hanging out of me for two days.)  But that is when the doctors finally felt the treatment was indeed working.  And I scanned the next week and yes, the bad node had blown-up and then liquified….which they said meant it was dying. 

                                                            So for me, it worked to continue to stay on the drug.  And now that node is only the size of my thumbnail…which is almost normal size.  I feel fine and am able to work everyday.  I am actually so much healthier than I was before I received this diagnosis….but I attribute that to my healthy changes in diet that I started a couple weeks after getting my diagnosis, so I could help my body as much as possible.  And I truly think that was a big win for me.

                                                            Good luck with your decisions and I hope that your husbands body ends up responding very well to MK-3475.

                                                            All my best,

                                                            Laurie

                                                            sweetaugust
                                                            Participant

                                                              Hi Cheryl,

                                                              This whole Melanoma world is so crazy.  The one thing I do know is that we all are so different and we all react differently to drugs.  I know that as an adult, I am extremely sensitive to adult medications and I am allergic to many different drugs.  This made it so I was very concerned about trying any new drug. 

                                                              I am not only quite lucky to have been given the opportunity to go on MK-3475, but to have had such great results from it as well without any bad side effects.  I know back when I started, I only knew that I was offered 3 different treatment plan options…Yervoy, Zelboraf, or if I qualified, the MK-3475 trial.  And I chose the drug trial because it listed the least amount of bad side-effects.  

                                                              I, like everyone else, had no idea what I was in for.  Not even the doctors really knew what to expect.  So after scanning at the 12 week mark, they were concerned as to whether it was really working for me because yes, all the other spots and mass on my liver had disappeared, which was amazing news, but the bad node that got me into the trial doubled in size.   After the 12 week scan, they didn't have  much else to go off of for those next 12 weeks before I scanned again.  All they were going off of was that they could physically feel that the node was getting bigger to the touch.  So they were worried and kept thinking that maybe they needed to stop treatment and I should go into surgery to remove that one bad node that was so aggressive. But my mum kept pushing them to give me more time on the drug.  She really felt it just need more time to turn that aggressive one around. 

                                                              And a week before my next 12 week scan, that bad node blew up and died.  It was quite painful (like I was being stabbed in the arm pit every 5-10 seconds for 24 hours and it blew up so that it was like a baseball hanging out of me for two days.)  But that is when the doctors finally felt the treatment was indeed working.  And I scanned the next week and yes, the bad node had blown-up and then liquified….which they said meant it was dying. 

                                                              So for me, it worked to continue to stay on the drug.  And now that node is only the size of my thumbnail…which is almost normal size.  I feel fine and am able to work everyday.  I am actually so much healthier than I was before I received this diagnosis….but I attribute that to my healthy changes in diet that I started a couple weeks after getting my diagnosis, so I could help my body as much as possible.  And I truly think that was a big win for me.

                                                              Good luck with your decisions and I hope that your husbands body ends up responding very well to MK-3475.

                                                              All my best,

                                                              Laurie

                                                              cherylobrien
                                                              Participant

                                                                Hi Laurie,

                                                                I am glad you are doing so well and that MK 3475 is working for you.  My husband, diagnosed in May 2013 with stage lV melanoma metastisized to his brain (unknown origin) is also at Dana Farber.  After a temporal lobe resection on the right last May and another one on the left side this May, he had whole brain radiation this June and is now on MK 3475 every three weeks.  (Ippi seemed to work but then didn't) He has one mass in his small intestine now and that's why they started the MK 3475 in August.  He has had 3 infusions so far.  He has the nasea and joint pain and because of the location of the mass in his intestine has a lot of pain in that area.  He was ready to stop the infusions but after reading how things may change and get better after a few more he has decided to definately continue. Because he works in construction he has been unable to work since May.  Hearing how good the infusions have worked for you we are hopeful that he may start to respond as well.  As allways we will dread the upcoming scans next month after his next infusion, but hopefully the tumor will start to shrink and maybe no new ones will appear.

                                                                If anyone else has anything they want to share about being on MK 3475 I would really like to hear about it.

                                                                Cheryl

                                                                cherylobrien
                                                                Participant

                                                                  Hi Laurie,

                                                                  I am glad you are doing so well and that MK 3475 is working for you.  My husband, diagnosed in May 2013 with stage lV melanoma metastisized to his brain (unknown origin) is also at Dana Farber.  After a temporal lobe resection on the right last May and another one on the left side this May, he had whole brain radiation this June and is now on MK 3475 every three weeks.  (Ippi seemed to work but then didn't) He has one mass in his small intestine now and that's why they started the MK 3475 in August.  He has had 3 infusions so far.  He has the nasea and joint pain and because of the location of the mass in his intestine has a lot of pain in that area.  He was ready to stop the infusions but after reading how things may change and get better after a few more he has decided to definately continue. Because he works in construction he has been unable to work since May.  Hearing how good the infusions have worked for you we are hopeful that he may start to respond as well.  As allways we will dread the upcoming scans next month after his next infusion, but hopefully the tumor will start to shrink and maybe no new ones will appear.

                                                                  If anyone else has anything they want to share about being on MK 3475 I would really like to hear about it.

                                                                  Cheryl

                                                                  sweetaugust
                                                                  Participant

                                                                    Hi there,

                                                                    I appear to be a little late to the party, but it was nice to see this forum party all the same.  My melanoma metastesized to a lymph node in my right arm pit in Sept 2012 at 39 yrs old.  The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.

                                                                    I started MK-3475 (highest dose – every 3 weeks) Oct 31, 2012…and it is now March 21, 2014 and i am doing great.  I am at Dana Farber in Boston.

                                                                    At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared.  But the met node was aggressive and doubled in size.  At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was two days ago and my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.

                                                                    Side effects for me:  Living a basically normal life.  Still working fulltime and feeling good.  Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up.  Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months.  I get a little fatigue, but really that is probably just from working and my social life.  I just started getting joint pain this week in my hip and shoulder. 

                                                                    Otherwise all is great.  I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

                                                                    How are you all doing over time?  I still have never met anyone else on MK-3475.  I think there are 12 of us in Boston, but I could be wrong.

                                                                    Laurie

                                                                    sweetaugust
                                                                    Participant

                                                                      Hi there,

                                                                      I appear to be a little late to the party, but it was nice to see this forum party all the same.  My melanoma metastesized to a lymph node in my right arm pit in Sept 2012 at 39 yrs old.  The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.

                                                                      I started MK-3475 (highest dose – every 3 weeks) Oct 31, 2012…and it is now March 21, 2014 and i am doing great.  I am at Dana Farber in Boston.

                                                                      At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared.  But the met node was aggressive and doubled in size.  At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was two days ago and my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.

                                                                      Side effects for me:  Living a basically normal life.  Still working fulltime and feeling good.  Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up.  Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months.  I get a little fatigue, but really that is probably just from working and my social life.  I just started getting joint pain this week in my hip and shoulder. 

                                                                      Otherwise all is great.  I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

                                                                      How are you all doing over time?  I still have never met anyone else on MK-3475.  I think there are 12 of us in Boston, but I could be wrong.

                                                                      Laurie

                                                                      donnafinn
                                                                      Participant

                                                                        Hello to all:

                                                                        i will be receiving my 9th anti pd1 on Monday at Beth Israel Deaconess in Boston.  I go every other week and I am o the highest dose they are allowing at this time.  I had an immediate and positive response after the first infusion.  

                                                                        I now have 72 % less cancer in my system. Some new cancer has shown up in my hip area bur nothing to be concerned about right now.  For me, it is a miracle drug.  IPY-3 did not work for me at all.  In fact my cancer had spread while o the drug. 

                                                                        The fatigue is a very real side effect. It has prevented me from returning to my teaching position that I love. The rash is intermittent and the joint pain has been managed by taking Triple-flex and Advil.  

                                                                        I wish you all success on this great drug and a better new year. I'm not usually wishing my time away but I'm not upset about seeing 2013 gone.

                                                                        DMarie

                                                                         

                                                                         

                                                                         

                                                                        donnafinn
                                                                        Participant

                                                                          Hello to all:

                                                                          i will be receiving my 9th anti pd1 on Monday at Beth Israel Deaconess in Boston.  I go every other week and I am o the highest dose they are allowing at this time.  I had an immediate and positive response after the first infusion.  

                                                                          I now have 72 % less cancer in my system. Some new cancer has shown up in my hip area bur nothing to be concerned about right now.  For me, it is a miracle drug.  IPY-3 did not work for me at all.  In fact my cancer had spread while o the drug. 

                                                                          The fatigue is a very real side effect. It has prevented me from returning to my teaching position that I love. The rash is intermittent and the joint pain has been managed by taking Triple-flex and Advil.  

                                                                          I wish you all success on this great drug and a better new year. I'm not usually wishing my time away but I'm not upset about seeing 2013 gone.

                                                                          DMarie

                                                                           

                                                                           

                                                                           

                                                                        Josh
                                                                        Participant

                                                                          Thanks a lot for the help, everyone! Like most people here, I've found this forum extremely helpful. In response to some of the feedback on my question, I should say that I've definitely been in contact with my oncologist, who I love (in a doctorly way). It's just that this drug is still new enough that knowledge about exactly when the drug kicks in is still pretty limited to the twelve week scan mark. I guess I was hoping to hear other people say that they were cleary getting worse until week 10 or something. Though only, of course, if it was true ๐Ÿ™‚

                                                                           

                                                                          Thanks again, everyone!

                                                                           

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