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More questions on response
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More questions on response

› Forums › General Melanoma Community › More questions on response

  • Post
    • October 24, 2016 at 7:53 pm
    JoshF
    Participant

      Hi all! I posted a question regarding responses for people who had sub-q's. The responses I received were great. One of the key takeaways for me was people noticed tenderness/soreness in and around the sub-q. So a few questions….

      How long did soreness/tenderness last?

      How long until you noticed it shrinking? Days…weeks?

      For those that had multiple sub-q's…did this happen one by one or was it something that happened simultaneously in all tumors?

      Reason I ask is that I have roughly a 2-3CM tumor in my shoulder (deltoid). That thing started getting really sore and hard Thursday nightish. It stayed that way until today. It's still firm and tender but not as bad. Can't really say it shrunk yet which is why I ask. I'm cautiously optimistic and know responses vary…rapid to over time. If this is in fact inflammatory immune response, I don't know what to expect as I have no experience. I'm praying this sucker is being broken down as I write this. I appreciate anyone who can share. I found it encouraging that people said they experienced this and the it happened to me but I'm tempering expectations. Thanks…. Be well!

      Josh

    Viewing 8 reply threads
    • Replies
        • October 24, 2016 at 9:13 pm
        Casitas1
        Participant

          Hey Josh, I don't have experience w/subQs but had one nasty soft tissue tumor in cheek(golf ball size) that popped through inside of mouth. I noticed shrinking right away after one week on Keytruda. Two to three times a week my tumor would swell get tender/painful and on those days would feel lousy w/aches, pains, nausea and slight fever. Just typical side effects from treatment. I also had this with Ippi/Nivo combo but much less… I ended up failing the combo though. Did low dose Chemo between combo and Pembro. My tumor became partially necrotic but grew by a third. Doc thinks the chemo pissed it off and Pembro finished the job!

          Keep it up my friend you inspire us all…

          Best, Paul

          • October 24, 2016 at 9:13 pm
          Casitas1
          Participant

            Hey Josh, I don't have experience w/subQs but had one nasty soft tissue tumor in cheek(golf ball size) that popped through inside of mouth. I noticed shrinking right away after one week on Keytruda. Two to three times a week my tumor would swell get tender/painful and on those days would feel lousy w/aches, pains, nausea and slight fever. Just typical side effects from treatment. I also had this with Ippi/Nivo combo but much less… I ended up failing the combo though. Did low dose Chemo between combo and Pembro. My tumor became partially necrotic but grew by a third. Doc thinks the chemo pissed it off and Pembro finished the job!

            Keep it up my friend you inspire us all…

            Best, Paul

              • October 24, 2016 at 10:02 pm
              JoshF
              Participant

                Thanks Paul…that sounds rough…painful. Great you're doing better! I'm hoping this is a response…like you said it's getting angry and my immune system will finish this off.

                Josh

                • October 24, 2016 at 10:02 pm
                JoshF
                Participant

                  Thanks Paul…that sounds rough…painful. Great you're doing better! I'm hoping this is a response…like you said it's getting angry and my immune system will finish this off.

                  Josh

                  • October 24, 2016 at 10:02 pm
                  JoshF
                  Participant

                    Thanks Paul…that sounds rough…painful. Great you're doing better! I'm hoping this is a response…like you said it's getting angry and my immune system will finish this off.

                    Josh

                  • October 24, 2016 at 9:13 pm
                  Casitas1
                  Participant

                    Hey Josh, I don't have experience w/subQs but had one nasty soft tissue tumor in cheek(golf ball size) that popped through inside of mouth. I noticed shrinking right away after one week on Keytruda. Two to three times a week my tumor would swell get tender/painful and on those days would feel lousy w/aches, pains, nausea and slight fever. Just typical side effects from treatment. I also had this with Ippi/Nivo combo but much less… I ended up failing the combo though. Did low dose Chemo between combo and Pembro. My tumor became partially necrotic but grew by a third. Doc thinks the chemo pissed it off and Pembro finished the job!

                    Keep it up my friend you inspire us all…

                    Best, Paul

                    • October 24, 2016 at 9:18 pm
                    msitz
                    Participant

                      Hi Josh,

                      My dad had 2 subcutaneous tumours. One was removed for TIL but he had the other when he started on Keytruda. It was a couple of centimeters and was not at all painful prior to beginning treatment. It is hard to remember the exact timeline of events, but after he started Keytruda it swelled up and got very hard and painful. It then shrunk entirely (within several weeks?) and is now gone.

                      My dad has been on Keytruda since March 2015 and has had an almost complete response. His last few tumours continue to shrink. He has metastatic melanoma of unknown primary and had a very high tumour burden with lung, bowel and brain metastases at diagnosis (and tumours up to 7-8cm). Next week will be 19 months since his diagnosis when he was given a prognosis of 2 months. He is back at work full time and you would never know he has cancer. There is hope!!

                      – msitz

                        • October 24, 2016 at 10:00 pm
                        JoshF
                        Participant

                          Wow…that's great! Love to hear these stories…gives hope especially since I'm on the higher side of tumor burden, have had brain mets just this past August. 

                          • October 24, 2016 at 10:00 pm
                          JoshF
                          Participant

                            Wow…that's great! Love to hear these stories…gives hope especially since I'm on the higher side of tumor burden, have had brain mets just this past August. 

                            • October 24, 2016 at 10:00 pm
                            JoshF
                            Participant

                              Wow…that's great! Love to hear these stories…gives hope especially since I'm on the higher side of tumor burden, have had brain mets just this past August. 

                              • February 20, 2017 at 10:34 pm
                              zfishberg
                              Participant

                                So glad to hear about good results for your Dad.

                                My husband is in a similar boat. He had a skin lesion ( 2A) in 2012 that was removed and no further treatments were necessary. In October of 2016 he was diagnosed with multiple brain AMD lungs mets.

                                Had a surgery to remove the largest brain lesion (3.5 cm), then Gamma Knife procedure to treat remaining 10 lesions. He was taking the MEK/Taf combo for about two month, but had to stop because of bad reactions – very high fever ( 103-104) that would not go away even after stopping the drugs. WE just recently switched to Keytruda and will have a second Gamma Knife procedure in March to treat 3 new tiny lesions.

                                His CT scan after being 2 month on the BRAF combo showed that lungs lesions are shrinking and no new growth in other parts of body.

                                Question to you: Did your Dad was on Keytruda since arch 2015 without any breaks/interruptions, i.e. for more than 1 year.

                                • February 20, 2017 at 10:34 pm
                                zfishberg
                                Participant

                                  So glad to hear about good results for your Dad.

                                  My husband is in a similar boat. He had a skin lesion ( 2A) in 2012 that was removed and no further treatments were necessary. In October of 2016 he was diagnosed with multiple brain AMD lungs mets.

                                  Had a surgery to remove the largest brain lesion (3.5 cm), then Gamma Knife procedure to treat remaining 10 lesions. He was taking the MEK/Taf combo for about two month, but had to stop because of bad reactions – very high fever ( 103-104) that would not go away even after stopping the drugs. WE just recently switched to Keytruda and will have a second Gamma Knife procedure in March to treat 3 new tiny lesions.

                                  His CT scan after being 2 month on the BRAF combo showed that lungs lesions are shrinking and no new growth in other parts of body.

                                  Question to you: Did your Dad was on Keytruda since arch 2015 without any breaks/interruptions, i.e. for more than 1 year.

                                • October 24, 2016 at 9:18 pm
                                msitz
                                Participant

                                  Hi Josh,

                                  My dad had 2 subcutaneous tumours. One was removed for TIL but he had the other when he started on Keytruda. It was a couple of centimeters and was not at all painful prior to beginning treatment. It is hard to remember the exact timeline of events, but after he started Keytruda it swelled up and got very hard and painful. It then shrunk entirely (within several weeks?) and is now gone.

                                  My dad has been on Keytruda since March 2015 and has had an almost complete response. His last few tumours continue to shrink. He has metastatic melanoma of unknown primary and had a very high tumour burden with lung, bowel and brain metastases at diagnosis (and tumours up to 7-8cm). Next week will be 19 months since his diagnosis when he was given a prognosis of 2 months. He is back at work full time and you would never know he has cancer. There is hope!!

                                  – msitz

                                  • October 24, 2016 at 9:18 pm
                                  msitz
                                  Participant

                                    Hi Josh,

                                    My dad had 2 subcutaneous tumours. One was removed for TIL but he had the other when he started on Keytruda. It was a couple of centimeters and was not at all painful prior to beginning treatment. It is hard to remember the exact timeline of events, but after he started Keytruda it swelled up and got very hard and painful. It then shrunk entirely (within several weeks?) and is now gone.

                                    My dad has been on Keytruda since March 2015 and has had an almost complete response. His last few tumours continue to shrink. He has metastatic melanoma of unknown primary and had a very high tumour burden with lung, bowel and brain metastases at diagnosis (and tumours up to 7-8cm). Next week will be 19 months since his diagnosis when he was given a prognosis of 2 months. He is back at work full time and you would never know he has cancer. There is hope!!

                                    – msitz

                                    • October 24, 2016 at 9:49 pm
                                    Spl25
                                    Participant

                                      I've had a subQ flare up, then shrink, then flare up, then shrink, severl times before finally disappearing. Out of curiosity, are you HLA-A*0201 type?

                                      • October 24, 2016 at 9:49 pm
                                      Spl25
                                      Participant

                                        I've had a subQ flare up, then shrink, then flare up, then shrink, severl times before finally disappearing. Out of curiosity, are you HLA-A*0201 type?

                                        • October 24, 2016 at 9:49 pm
                                        Spl25
                                        Participant

                                          I've had a subQ flare up, then shrink, then flare up, then shrink, severl times before finally disappearing. Out of curiosity, are you HLA-A*0201 type?

                                            • October 24, 2016 at 9:57 pm
                                            JoshF
                                            Participant

                                              Yes I am HLA-A201….

                                              • October 24, 2016 at 9:57 pm
                                              JoshF
                                              Participant

                                                Yes I am HLA-A201….

                                                • October 24, 2016 at 9:57 pm
                                                JoshF
                                                Participant

                                                  Yes I am HLA-A201….

                                                  • October 24, 2016 at 11:25 pm
                                                  Spl25
                                                  Participant

                                                    Same here! Have you ever seen a good explanation of why A201 is unique re: the MART-1 ACT trials? 

                                                    • October 24, 2016 at 11:25 pm
                                                    Spl25
                                                    Participant

                                                      Same here! Have you ever seen a good explanation of why A201 is unique re: the MART-1 ACT trials? 

                                                      • October 24, 2016 at 11:25 pm
                                                      Spl25
                                                      Participant

                                                        Same here! Have you ever seen a good explanation of why A201 is unique re: the MART-1 ACT trials? 

                                                        • October 25, 2016 at 2:26 am
                                                        JoshF
                                                        Participant

                                                          I did ACT about a month ago at MDA. They were specific to Mart 1 and the blood type. Antigen specific from what I understand. Though all tumors aren't the same….they can express different antigen. Ideally if you respond, they'd like to see from what I gathered a response that is over time. Increases chance of antigen spreading…where immune system recognizes any antigen a tumor expresses. I don't totally understand it all but I'm praying this works for me and they figure it out so we can save more people.

                                                          Josh

                                                          • October 25, 2016 at 2:26 am
                                                          JoshF
                                                          Participant

                                                            I did ACT about a month ago at MDA. They were specific to Mart 1 and the blood type. Antigen specific from what I understand. Though all tumors aren't the same….they can express different antigen. Ideally if you respond, they'd like to see from what I gathered a response that is over time. Increases chance of antigen spreading…where immune system recognizes any antigen a tumor expresses. I don't totally understand it all but I'm praying this works for me and they figure it out so we can save more people.

                                                            Josh

                                                            • October 25, 2016 at 4:06 pm
                                                            Polymath
                                                            Participant

                                                              Josh,

                                                              While we all hope that participating in a trial can help the next generation of patients, right now, all we want is this to work for you.  That's where my energy is focused.  This shield, this cloaking device our tumors employ must have weaknesses.  We must exploit them.  Win this one for you and your family first, then pave the way for others to defeat this elusive enemy.

                                                              Gary

                                                              • October 25, 2016 at 4:06 pm
                                                              Polymath
                                                              Participant

                                                                Josh,

                                                                While we all hope that participating in a trial can help the next generation of patients, right now, all we want is this to work for you.  That's where my energy is focused.  This shield, this cloaking device our tumors employ must have weaknesses.  We must exploit them.  Win this one for you and your family first, then pave the way for others to defeat this elusive enemy.

                                                                Gary

                                                                • October 26, 2016 at 1:04 am
                                                                Bubbles
                                                                Participant

                                                                  Amen. C

                                                                  • October 26, 2016 at 1:04 am
                                                                  Bubbles
                                                                  Participant

                                                                    Amen. C

                                                                    • October 26, 2016 at 1:04 am
                                                                    Bubbles
                                                                    Participant

                                                                      Amen. C

                                                                      • October 25, 2016 at 4:06 pm
                                                                      Polymath
                                                                      Participant

                                                                        Josh,

                                                                        While we all hope that participating in a trial can help the next generation of patients, right now, all we want is this to work for you.  That's where my energy is focused.  This shield, this cloaking device our tumors employ must have weaknesses.  We must exploit them.  Win this one for you and your family first, then pave the way for others to defeat this elusive enemy.

                                                                        Gary

                                                                        • October 26, 2016 at 1:49 am
                                                                        Spl25
                                                                        Participant

                                                                          Well MART-1 is a great target for melanoma fighters for sure (it's expressed on most melanoma tumor cells). Good luck with your trial Josh!

                                                                          • October 26, 2016 at 1:49 am
                                                                          Spl25
                                                                          Participant

                                                                            Well MART-1 is a great target for melanoma fighters for sure (it's expressed on most melanoma tumor cells). Good luck with your trial Josh!

                                                                            • October 26, 2016 at 1:49 am
                                                                            Spl25
                                                                            Participant

                                                                              Well MART-1 is a great target for melanoma fighters for sure (it's expressed on most melanoma tumor cells). Good luck with your trial Josh!

                                                                              • October 25, 2016 at 2:26 am
                                                                              JoshF
                                                                              Participant

                                                                                I did ACT about a month ago at MDA. They were specific to Mart 1 and the blood type. Antigen specific from what I understand. Though all tumors aren't the same….they can express different antigen. Ideally if you respond, they'd like to see from what I gathered a response that is over time. Increases chance of antigen spreading…where immune system recognizes any antigen a tumor expresses. I don't totally understand it all but I'm praying this works for me and they figure it out so we can save more people.

                                                                                Josh

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