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Ipi in combination with radiation

Forums General Melanoma Community Ipi in combination with radiation

  • Post
    Michelem
    Participant

      My husband has now moved up to Stage IVa and will begin a course of Ipi in a week. Because they know that all the cancer was not removed from his groin area (doc says it has "radiated into surrounding tissue" and there's simply no way to be certain of getting it all surgically") they also recommend radiation. The radiation will begin about the time of the second Ipi infusion – so they'll know for sure how he's tolerating the Ipi before beginning radiation.

      I'm wondering if anyone else has had this combo, and how it was tolerated?

      Another concern is that our various doctors do not agree on the value of radiation. Our surgeon and radiation oncologist recommend it. Our medical oncologist is carefully neural. Next week we will see a melanoma specialist in San Francisco, and we are told that he does not recommend radiation.

      Thoughts appreciated!  mm

    Viewing 17 reply threads
    • Replies
        arthurjedi007
        Participant

          Radiation was my first treatment but not in combo with ipi. It was pallative (30 Gy in 10 fractions) to my T10 and a few other vertebrae. I do not believe I would still be walking today without it. Unfortunately I did not know about combining it with ipi until a few weeks ago when I was almost done with ipi. Based on my experience with radiation and ipi side affects done seperately I would do them together if I could go back in time. My radiation was to bone so that might be different side affects. My side affects for both done seperately have been minor temporary things. But like my Dr says everyone is different with these treatments. Also my current Dr is a melanoma oncologist and does not believe in radiation. The radiation I had was by a regular cancer oncologist and radiation oncologist. The radiation shrank the tumor by 20% and removed what was in the spinal canal. The last radiation zap was July 5 2013 and was still holding as of last PET on Oct 17 2013. All the other tumors had grown even with the Zelboraf treatment. I get my next PET on Monday Feb 3 2014 to see the affects of ipi.

          One of the other members here has an article on her blog about ipi and radiation.

          Here is the link.

          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

           

          arthurjedi007
          Participant

            Radiation was my first treatment but not in combo with ipi. It was pallative (30 Gy in 10 fractions) to my T10 and a few other vertebrae. I do not believe I would still be walking today without it. Unfortunately I did not know about combining it with ipi until a few weeks ago when I was almost done with ipi. Based on my experience with radiation and ipi side affects done seperately I would do them together if I could go back in time. My radiation was to bone so that might be different side affects. My side affects for both done seperately have been minor temporary things. But like my Dr says everyone is different with these treatments. Also my current Dr is a melanoma oncologist and does not believe in radiation. The radiation I had was by a regular cancer oncologist and radiation oncologist. The radiation shrank the tumor by 20% and removed what was in the spinal canal. The last radiation zap was July 5 2013 and was still holding as of last PET on Oct 17 2013. All the other tumors had grown even with the Zelboraf treatment. I get my next PET on Monday Feb 3 2014 to see the affects of ipi.

            One of the other members here has an article on her blog about ipi and radiation.

            Here is the link.

            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

             

              Michelem
              Participant

                Thank you for sharing – definitely an interesting article. And your experiences with your docs mirror ours exactly. Would be a bit more comforting if they were all on the same page!

                Michelem
                Participant

                  Thank you for sharing – definitely an interesting article. And your experiences with your docs mirror ours exactly. Would be a bit more comforting if they were all on the same page!

                  Michelem
                  Participant

                    Thank you for sharing – definitely an interesting article. And your experiences with your docs mirror ours exactly. Would be a bit more comforting if they were all on the same page!

                  arthurjedi007
                  Participant

                    Radiation was my first treatment but not in combo with ipi. It was pallative (30 Gy in 10 fractions) to my T10 and a few other vertebrae. I do not believe I would still be walking today without it. Unfortunately I did not know about combining it with ipi until a few weeks ago when I was almost done with ipi. Based on my experience with radiation and ipi side affects done seperately I would do them together if I could go back in time. My radiation was to bone so that might be different side affects. My side affects for both done seperately have been minor temporary things. But like my Dr says everyone is different with these treatments. Also my current Dr is a melanoma oncologist and does not believe in radiation. The radiation I had was by a regular cancer oncologist and radiation oncologist. The radiation shrank the tumor by 20% and removed what was in the spinal canal. The last radiation zap was July 5 2013 and was still holding as of last PET on Oct 17 2013. All the other tumors had grown even with the Zelboraf treatment. I get my next PET on Monday Feb 3 2014 to see the affects of ipi.

                    One of the other members here has an article on her blog about ipi and radiation.

                    Here is the link.

                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

                     

                    UrsulaZ
                    Participant

                      hi Michele — 

                      I had radiation to my left groin area following surgery & concurrent with a course of Interferon (I was in stage III at the time).

                      I don't have any brilliant advice, but do want to reinforce something that you've already noticed. The medical oncology and radiation oncology worlds don't communicate with each other much at all!

                      The med onc guys (locally and at Sloan Kettering) both seemed to think it was an utter waste of time to get radiation. And the radiation oncologist thought it was totally obvious that I would have it. . 

                      I don't think there is much evidence in the medical literature that radiation changes the prognosis.  But the prognosis in the past has been so gloomy that I think there is a "might as well try" kind of attitude. 

                      Radiation isn't benign, though. I now have some pretty serious lymphedema in that leg, which I suspect is more from radiation than from the surgery. Now that the ipi/nivo seems to have worked for now, my leg is bothering me a fair bit. (When I chose it, I believed that I didn't have more than a few months to live, so I wasn't very worried about a chronic condition like lymphedema. So it's a blessing in its way, I guess). 

                      Good luck, Michele. Let us know what you decide? Sorry that your husband is in stage IV. I hope he responds really well to the Ipi!

                      -ursula

                      UrsulaZ
                      Participant

                        hi Michele — 

                        I had radiation to my left groin area following surgery & concurrent with a course of Interferon (I was in stage III at the time).

                        I don't have any brilliant advice, but do want to reinforce something that you've already noticed. The medical oncology and radiation oncology worlds don't communicate with each other much at all!

                        The med onc guys (locally and at Sloan Kettering) both seemed to think it was an utter waste of time to get radiation. And the radiation oncologist thought it was totally obvious that I would have it. . 

                        I don't think there is much evidence in the medical literature that radiation changes the prognosis.  But the prognosis in the past has been so gloomy that I think there is a "might as well try" kind of attitude. 

                        Radiation isn't benign, though. I now have some pretty serious lymphedema in that leg, which I suspect is more from radiation than from the surgery. Now that the ipi/nivo seems to have worked for now, my leg is bothering me a fair bit. (When I chose it, I believed that I didn't have more than a few months to live, so I wasn't very worried about a chronic condition like lymphedema. So it's a blessing in its way, I guess). 

                        Good luck, Michele. Let us know what you decide? Sorry that your husband is in stage IV. I hope he responds really well to the Ipi!

                        -ursula

                          Michelem
                          Participant

                            Thank you, Ursula. Definitely sounds like your situation is similar to my husband's. The lymphedema has been his most serious effect, following two surgeries. He is working to get it under control, working  with PT and for now wrapping it daily in a complex way in an effort to get the swelling down enough to be measured for a permanent compression garment. We are worried that exacerbation of this condition will be a side effect of radiation . . . but the options are very limited. Right now his view is "throw it all at me", and we'll see if something will work.

                            It would definitely be a plus if all the docs were in tune, but each does seem to view it from the perspective of his specialty.

                            Sounds like you are on the upside, despite the leg, and I hope that trend continues for you! mm

                            Michelem
                            Participant

                              Thank you, Ursula. Definitely sounds like your situation is similar to my husband's. The lymphedema has been his most serious effect, following two surgeries. He is working to get it under control, working  with PT and for now wrapping it daily in a complex way in an effort to get the swelling down enough to be measured for a permanent compression garment. We are worried that exacerbation of this condition will be a side effect of radiation . . . but the options are very limited. Right now his view is "throw it all at me", and we'll see if something will work.

                              It would definitely be a plus if all the docs were in tune, but each does seem to view it from the perspective of his specialty.

                              Sounds like you are on the upside, despite the leg, and I hope that trend continues for you! mm

                              Michelem
                              Participant

                                Thank you, Ursula. Definitely sounds like your situation is similar to my husband's. The lymphedema has been his most serious effect, following two surgeries. He is working to get it under control, working  with PT and for now wrapping it daily in a complex way in an effort to get the swelling down enough to be measured for a permanent compression garment. We are worried that exacerbation of this condition will be a side effect of radiation . . . but the options are very limited. Right now his view is "throw it all at me", and we'll see if something will work.

                                It would definitely be a plus if all the docs were in tune, but each does seem to view it from the perspective of his specialty.

                                Sounds like you are on the upside, despite the leg, and I hope that trend continues for you! mm

                              UrsulaZ
                              Participant

                                hi Michele — 

                                I had radiation to my left groin area following surgery & concurrent with a course of Interferon (I was in stage III at the time).

                                I don't have any brilliant advice, but do want to reinforce something that you've already noticed. The medical oncology and radiation oncology worlds don't communicate with each other much at all!

                                The med onc guys (locally and at Sloan Kettering) both seemed to think it was an utter waste of time to get radiation. And the radiation oncologist thought it was totally obvious that I would have it. . 

                                I don't think there is much evidence in the medical literature that radiation changes the prognosis.  But the prognosis in the past has been so gloomy that I think there is a "might as well try" kind of attitude. 

                                Radiation isn't benign, though. I now have some pretty serious lymphedema in that leg, which I suspect is more from radiation than from the surgery. Now that the ipi/nivo seems to have worked for now, my leg is bothering me a fair bit. (When I chose it, I believed that I didn't have more than a few months to live, so I wasn't very worried about a chronic condition like lymphedema. So it's a blessing in its way, I guess). 

                                Good luck, Michele. Let us know what you decide? Sorry that your husband is in stage IV. I hope he responds really well to the Ipi!

                                -ursula

                                Marianne quinn
                                Participant

                                  I have been meaning to reply to you for awhile. We live in the Roseville area. My husband is in the ipi trial for stage 3. He is in the 10 mg ipi  arm- had 2 doses with little side effects. I think our guys were diagnosed at about the same time. Mine got his melanoma from hitting his thumb with a hammer! He let it got too long. He had 2 nodes and then a lymphendectomy. He also had a partial amputation. Radiation was offered initially but he did not want to deal with the lymph edema. I think it could be brutal for your husband in the groin area, maybe disabling. How much ipi is he going to get? Can he get in a combo trial? 

                                  we go to kaiser. So far, we are very pleased with them.  Please keep us posted. I think about you a lot.i post as anonymous because my sign in is my real name. I will try to change it

                                  Marianne quinn
                                  Participant

                                    I have been meaning to reply to you for awhile. We live in the Roseville area. My husband is in the ipi trial for stage 3. He is in the 10 mg ipi  arm- had 2 doses with little side effects. I think our guys were diagnosed at about the same time. Mine got his melanoma from hitting his thumb with a hammer! He let it got too long. He had 2 nodes and then a lymphendectomy. He also had a partial amputation. Radiation was offered initially but he did not want to deal with the lymph edema. I think it could be brutal for your husband in the groin area, maybe disabling. How much ipi is he going to get? Can he get in a combo trial? 

                                    we go to kaiser. So far, we are very pleased with them.  Please keep us posted. I think about you a lot.i post as anonymous because my sign in is my real name. I will try to change it

                                      Michelem
                                      Participant

                                        Thank you for your message!  It's good to have companions in this unwanted journey. I don't know what the ipi dose will be – we were kicked from the trial when more cancer showed up in the screening PET scan, but now that he is considered IVa, he will receive it "off protocol". 

                                        Yes, the lymphedema is a serious problem as a result of the surgery, and we're concerned that the radiation will worsen it considerably. But . . . not sure what the options are.  We will meet with a specialist in SF next week for his perspective. And there will be a PET scan next week. If that shows the cancer has spread further since December, it may be they will not do the radiation.

                                        We're working with Sutter and I feel we're getting excellent care and attention. And everything that's been brought up has been very consistent with what I'm finding here and through other research. The bottom line is there is no established effective protocol and so . . . we just have to see how things will go.

                                        Certainly there are a lot of positive outcomes presented here, and that is very encouraging.

                                        Thank you for sharing! mm

                                        Michelem
                                        Participant

                                          Thank you for your message!  It's good to have companions in this unwanted journey. I don't know what the ipi dose will be – we were kicked from the trial when more cancer showed up in the screening PET scan, but now that he is considered IVa, he will receive it "off protocol". 

                                          Yes, the lymphedema is a serious problem as a result of the surgery, and we're concerned that the radiation will worsen it considerably. But . . . not sure what the options are.  We will meet with a specialist in SF next week for his perspective. And there will be a PET scan next week. If that shows the cancer has spread further since December, it may be they will not do the radiation.

                                          We're working with Sutter and I feel we're getting excellent care and attention. And everything that's been brought up has been very consistent with what I'm finding here and through other research. The bottom line is there is no established effective protocol and so . . . we just have to see how things will go.

                                          Certainly there are a lot of positive outcomes presented here, and that is very encouraging.

                                          Thank you for sharing! mm

                                          Michelem
                                          Participant

                                            Thank you for your message!  It's good to have companions in this unwanted journey. I don't know what the ipi dose will be – we were kicked from the trial when more cancer showed up in the screening PET scan, but now that he is considered IVa, he will receive it "off protocol". 

                                            Yes, the lymphedema is a serious problem as a result of the surgery, and we're concerned that the radiation will worsen it considerably. But . . . not sure what the options are.  We will meet with a specialist in SF next week for his perspective. And there will be a PET scan next week. If that shows the cancer has spread further since December, it may be they will not do the radiation.

                                            We're working with Sutter and I feel we're getting excellent care and attention. And everything that's been brought up has been very consistent with what I'm finding here and through other research. The bottom line is there is no established effective protocol and so . . . we just have to see how things will go.

                                            Certainly there are a lot of positive outcomes presented here, and that is very encouraging.

                                            Thank you for sharing! mm

                                          Marianne quinn
                                          Participant

                                            I have been meaning to reply to you for awhile. We live in the Roseville area. My husband is in the ipi trial for stage 3. He is in the 10 mg ipi  arm- had 2 doses with little side effects. I think our guys were diagnosed at about the same time. Mine got his melanoma from hitting his thumb with a hammer! He let it got too long. He had 2 nodes and then a lymphendectomy. He also had a partial amputation. Radiation was offered initially but he did not want to deal with the lymph edema. I think it could be brutal for your husband in the groin area, maybe disabling. How much ipi is he going to get? Can he get in a combo trial? 

                                            we go to kaiser. So far, we are very pleased with them.  Please keep us posted. I think about you a lot.i post as anonymous because my sign in is my real name. I will try to change it

                                            JerryfromFauq
                                            Participant

                                              My Excellent melanoma Surgeon/Researher was not wild about radiation after he spent 7 hours removing and having my iliac and inquinal nodes tested during the operation.  There was one area of matted ruptured nodes that he wasn't 100% sure of from the 25 January 2007 operation.  He recommended that I talk to a couple of Oncology Radiologists and decide what I wanted to do. 
                                              I talked to two and also talked to several people that had received radiation to their abdomen.  Since mine was anal melanoma, the radiologist wanted to start near my left front/side near waist level, radiate down thru my crotch and up the rear to cover thru the anal area.  I heards so many horror stories of the ongoing pain and operations from the people that had received extensive abdominal radiation, that I was extremely concerned.  The radioloogist said no problem, they would get everything perfect in a couple months of radiation. 

                                              i refused.  Within a month my lungs had innumerable lung mets.  IE, they were there before the groin operation, but too small to see on scans.  I went to IL-2 immediately.  IL-2 held my inumerable tumors  for 20 months and killed the ones that had started in my liver.  After the twenty months, innumerable new lung mets developed and the old lung mets rapidly quadrupled in size.  A new groin soft tissue tumor rapidly grew in the area near where the concern had been about the possibility of a few escaped cells.  This tumor was surgically removed the day I showed it to my surgeon!  That area has had no problem in the five years since then.  My lungs have not been NED since at least Feb 2007. but I am fully functional. 
                                              I am glad I handled things the way I did and have such a great team of Melanoma Specialists at UVA.  You will have to decide whaat you belive is the correct path for your Journey.  Looking backards later is of no benefit.

                                              Good luck!

                                              JerryfromFauq
                                              Participant

                                                My Excellent melanoma Surgeon/Researher was not wild about radiation after he spent 7 hours removing and having my iliac and inquinal nodes tested during the operation.  There was one area of matted ruptured nodes that he wasn't 100% sure of from the 25 January 2007 operation.  He recommended that I talk to a couple of Oncology Radiologists and decide what I wanted to do. 
                                                I talked to two and also talked to several people that had received radiation to their abdomen.  Since mine was anal melanoma, the radiologist wanted to start near my left front/side near waist level, radiate down thru my crotch and up the rear to cover thru the anal area.  I heards so many horror stories of the ongoing pain and operations from the people that had received extensive abdominal radiation, that I was extremely concerned.  The radioloogist said no problem, they would get everything perfect in a couple months of radiation. 

                                                i refused.  Within a month my lungs had innumerable lung mets.  IE, they were there before the groin operation, but too small to see on scans.  I went to IL-2 immediately.  IL-2 held my inumerable tumors  for 20 months and killed the ones that had started in my liver.  After the twenty months, innumerable new lung mets developed and the old lung mets rapidly quadrupled in size.  A new groin soft tissue tumor rapidly grew in the area near where the concern had been about the possibility of a few escaped cells.  This tumor was surgically removed the day I showed it to my surgeon!  That area has had no problem in the five years since then.  My lungs have not been NED since at least Feb 2007. but I am fully functional. 
                                                I am glad I handled things the way I did and have such a great team of Melanoma Specialists at UVA.  You will have to decide whaat you belive is the correct path for your Journey.  Looking backards later is of no benefit.

                                                Good luck!

                                                JerryfromFauq
                                                Participant

                                                  My Excellent melanoma Surgeon/Researher was not wild about radiation after he spent 7 hours removing and having my iliac and inquinal nodes tested during the operation.  There was one area of matted ruptured nodes that he wasn't 100% sure of from the 25 January 2007 operation.  He recommended that I talk to a couple of Oncology Radiologists and decide what I wanted to do. 
                                                  I talked to two and also talked to several people that had received radiation to their abdomen.  Since mine was anal melanoma, the radiologist wanted to start near my left front/side near waist level, radiate down thru my crotch and up the rear to cover thru the anal area.  I heards so many horror stories of the ongoing pain and operations from the people that had received extensive abdominal radiation, that I was extremely concerned.  The radioloogist said no problem, they would get everything perfect in a couple months of radiation. 

                                                  i refused.  Within a month my lungs had innumerable lung mets.  IE, they were there before the groin operation, but too small to see on scans.  I went to IL-2 immediately.  IL-2 held my inumerable tumors  for 20 months and killed the ones that had started in my liver.  After the twenty months, innumerable new lung mets developed and the old lung mets rapidly quadrupled in size.  A new groin soft tissue tumor rapidly grew in the area near where the concern had been about the possibility of a few escaped cells.  This tumor was surgically removed the day I showed it to my surgeon!  That area has had no problem in the five years since then.  My lungs have not been NED since at least Feb 2007. but I am fully functional. 
                                                  I am glad I handled things the way I did and have such a great team of Melanoma Specialists at UVA.  You will have to decide whaat you belive is the correct path for your Journey.  Looking backards later is of no benefit.

                                                  Good luck!

                                                  dhrahn
                                                  Participant

                                                    My husband has stage 4 and just finished last ipi infusion December 17th, 2013.  He had radiation to brain x 2, right orbital mass, back mass, and upper neck/occipital all during ipi infusions.  He did do the stereotactic radiation, not sure if that would make a difference, but he tolerated everything just fine.  Maybe a little fatigued but we never really knew if that was from yervoy, cancer, radiation or all 3.  

                                                    We would do it all again in a heartbeat. 

                                                    Holly

                                                    dhrahn
                                                    Participant

                                                      My husband has stage 4 and just finished last ipi infusion December 17th, 2013.  He had radiation to brain x 2, right orbital mass, back mass, and upper neck/occipital all during ipi infusions.  He did do the stereotactic radiation, not sure if that would make a difference, but he tolerated everything just fine.  Maybe a little fatigued but we never really knew if that was from yervoy, cancer, radiation or all 3.  

                                                      We would do it all again in a heartbeat. 

                                                      Holly

                                                      dhrahn
                                                      Participant

                                                        My husband has stage 4 and just finished last ipi infusion December 17th, 2013.  He had radiation to brain x 2, right orbital mass, back mass, and upper neck/occipital all during ipi infusions.  He did do the stereotactic radiation, not sure if that would make a difference, but he tolerated everything just fine.  Maybe a little fatigued but we never really knew if that was from yervoy, cancer, radiation or all 3.  

                                                        We would do it all again in a heartbeat. 

                                                        Holly

                                                          G-Samsa
                                                          Participant

                                                            Despite a good response to the IPI/Nivo trial, bone mets in pelvis and leg continued to erode my mobility–was on crutches this time last year.  The doctors added radiation to the treatment — indicating that it was acceptable and appropriate way of dealing with the mobility issue AND also indicated that studies seem to indicate an added systemic benefit by combining IPI and radiation…..I am not poetry in motion –but I am walking independently today.  Don't know whether there was a combined benefit– I like to think there was–but knock on wood stable now.  Only one point on the graph but something to consider.

                                                            G-Samsa
                                                            Participant

                                                              Despite a good response to the IPI/Nivo trial, bone mets in pelvis and leg continued to erode my mobility–was on crutches this time last year.  The doctors added radiation to the treatment — indicating that it was acceptable and appropriate way of dealing with the mobility issue AND also indicated that studies seem to indicate an added systemic benefit by combining IPI and radiation…..I am not poetry in motion –but I am walking independently today.  Don't know whether there was a combined benefit– I like to think there was–but knock on wood stable now.  Only one point on the graph but something to consider.

                                                              G-Samsa
                                                              Participant

                                                                Despite a good response to the IPI/Nivo trial, bone mets in pelvis and leg continued to erode my mobility–was on crutches this time last year.  The doctors added radiation to the treatment — indicating that it was acceptable and appropriate way of dealing with the mobility issue AND also indicated that studies seem to indicate an added systemic benefit by combining IPI and radiation…..I am not poetry in motion –but I am walking independently today.  Don't know whether there was a combined benefit– I like to think there was–but knock on wood stable now.  Only one point on the graph but something to consider.

                                                                buffcody
                                                                Participant

                                                                  My story is much like Holly's husband's.  Two brain tumors were found in October 2012 just about the time I was going to begin IPI as a systemic treatment for Stage IV that had appeared in my lung.  That was resected in July 2012. My oncologist believed along with the raiation oncologist that the combined effect of ipi and SRS on the brain would be best and that the best sequence would be to have two injections of ipi and to radiate just before the third.  The brain cancer has not reappeared.  One subcutaneous leision showed up in April 2013 and was easiy removed.  No way of telling, but I am obviously happy about my NED condition and feel the treatments and spacing are a large factor in my present condition.  So do the University of Michigan oncologists.  Hope you're husband enjoys the same or greater success.

                                                                   

                                                                  Frank

                                                                  buffcody
                                                                  Participant

                                                                    My story is much like Holly's husband's.  Two brain tumors were found in October 2012 just about the time I was going to begin IPI as a systemic treatment for Stage IV that had appeared in my lung.  That was resected in July 2012. My oncologist believed along with the raiation oncologist that the combined effect of ipi and SRS on the brain would be best and that the best sequence would be to have two injections of ipi and to radiate just before the third.  The brain cancer has not reappeared.  One subcutaneous leision showed up in April 2013 and was easiy removed.  No way of telling, but I am obviously happy about my NED condition and feel the treatments and spacing are a large factor in my present condition.  So do the University of Michigan oncologists.  Hope you're husband enjoys the same or greater success.

                                                                     

                                                                    Frank

                                                                    buffcody
                                                                    Participant

                                                                      My story is much like Holly's husband's.  Two brain tumors were found in October 2012 just about the time I was going to begin IPI as a systemic treatment for Stage IV that had appeared in my lung.  That was resected in July 2012. My oncologist believed along with the raiation oncologist that the combined effect of ipi and SRS on the brain would be best and that the best sequence would be to have two injections of ipi and to radiate just before the third.  The brain cancer has not reappeared.  One subcutaneous leision showed up in April 2013 and was easiy removed.  No way of telling, but I am obviously happy about my NED condition and feel the treatments and spacing are a large factor in my present condition.  So do the University of Michigan oncologists.  Hope you're husband enjoys the same or greater success.

                                                                       

                                                                      Frank

                                                                      Michelem
                                                                      Participant

                                                                        Thanks, Holly! That's encouraging!  mm

                                                                        Michelem
                                                                        Participant

                                                                          Thanks, Holly! That's encouraging!  mm

                                                                          Michelem
                                                                          Participant

                                                                            Thanks, Holly! That's encouraging!  mm

                                                                          Janet Lee
                                                                          Participant

                                                                            Hi Michele:

                                                                            My husband, Don, was diagnosed last January Stage IV, no known primary, with mets in many, many locations. He's really been through the ringer this past year. His first treatment was radiation to the sacral area, because he had fairly large, inoperable masses which were causing him tremendous pain. It worked and those masses have been stagnant for a year now. He's had SRS for brain mets on three different occasions, brain surgery to remove a tumor, surgery to remove a tumor in his inguinal/groin area. In between, he does manage to get a few weeks of feeling better.

                                                                            He responded minimally to Zelboraf (2-3 months) and had 4 infusions of Ipi from May to July 2013. His oncologist at Mass General says he is responding to the Ipi. His brain has been stable since August (!), and several key mets have gotten smaller and/or held steady. No new mets seen. Except…

                                                                            A mass grew rapidly in his left inguinal canal, which led to surgery last October. On his December 30 scans, there was a "lymph node" which had doubled in size, again in his left groin area. It is inoperable, and the oncologist has recommended radiation.

                                                                            There is an important notation here – according to our oncologist, they have seen very positive results from radiation when the patient has had Ipi, and even better when the patient is an Ipi-responder. Let's hope that's true!

                                                                            Don has now had 8 out of 16 treatments. Of course, of particular concern to us is that he's already had radiation in this area, so the radiation oncologist has to be very careful in planning the treatment to be careful of stomach, bowels, kidneys.

                                                                            As for the Ipi itself, Don had very few side effects. He did have some skin rashes, which were relieved by topical prescriptions.

                                                                            I hope our experience is helpful. Best of luck to you and your husband. I can't emphasize enough, just like everyone else on this Board, the importance of centralizing your care with a melanoma specialist. Not just someone who has treated melanoma, but a real specialist.

                                                                            And, you will also learn a lot from this group on the MPIP bulletin board. They are all awesome!

                                                                            Janet Lee

                                                                            Janet Lee
                                                                            Participant

                                                                              Hi Michele:

                                                                              My husband, Don, was diagnosed last January Stage IV, no known primary, with mets in many, many locations. He's really been through the ringer this past year. His first treatment was radiation to the sacral area, because he had fairly large, inoperable masses which were causing him tremendous pain. It worked and those masses have been stagnant for a year now. He's had SRS for brain mets on three different occasions, brain surgery to remove a tumor, surgery to remove a tumor in his inguinal/groin area. In between, he does manage to get a few weeks of feeling better.

                                                                              He responded minimally to Zelboraf (2-3 months) and had 4 infusions of Ipi from May to July 2013. His oncologist at Mass General says he is responding to the Ipi. His brain has been stable since August (!), and several key mets have gotten smaller and/or held steady. No new mets seen. Except…

                                                                              A mass grew rapidly in his left inguinal canal, which led to surgery last October. On his December 30 scans, there was a "lymph node" which had doubled in size, again in his left groin area. It is inoperable, and the oncologist has recommended radiation.

                                                                              There is an important notation here – according to our oncologist, they have seen very positive results from radiation when the patient has had Ipi, and even better when the patient is an Ipi-responder. Let's hope that's true!

                                                                              Don has now had 8 out of 16 treatments. Of course, of particular concern to us is that he's already had radiation in this area, so the radiation oncologist has to be very careful in planning the treatment to be careful of stomach, bowels, kidneys.

                                                                              As for the Ipi itself, Don had very few side effects. He did have some skin rashes, which were relieved by topical prescriptions.

                                                                              I hope our experience is helpful. Best of luck to you and your husband. I can't emphasize enough, just like everyone else on this Board, the importance of centralizing your care with a melanoma specialist. Not just someone who has treated melanoma, but a real specialist.

                                                                              And, you will also learn a lot from this group on the MPIP bulletin board. They are all awesome!

                                                                              Janet Lee

                                                                              Janet Lee
                                                                              Participant

                                                                                Hi Michele:

                                                                                My husband, Don, was diagnosed last January Stage IV, no known primary, with mets in many, many locations. He's really been through the ringer this past year. His first treatment was radiation to the sacral area, because he had fairly large, inoperable masses which were causing him tremendous pain. It worked and those masses have been stagnant for a year now. He's had SRS for brain mets on three different occasions, brain surgery to remove a tumor, surgery to remove a tumor in his inguinal/groin area. In between, he does manage to get a few weeks of feeling better.

                                                                                He responded minimally to Zelboraf (2-3 months) and had 4 infusions of Ipi from May to July 2013. His oncologist at Mass General says he is responding to the Ipi. His brain has been stable since August (!), and several key mets have gotten smaller and/or held steady. No new mets seen. Except…

                                                                                A mass grew rapidly in his left inguinal canal, which led to surgery last October. On his December 30 scans, there was a "lymph node" which had doubled in size, again in his left groin area. It is inoperable, and the oncologist has recommended radiation.

                                                                                There is an important notation here – according to our oncologist, they have seen very positive results from radiation when the patient has had Ipi, and even better when the patient is an Ipi-responder. Let's hope that's true!

                                                                                Don has now had 8 out of 16 treatments. Of course, of particular concern to us is that he's already had radiation in this area, so the radiation oncologist has to be very careful in planning the treatment to be careful of stomach, bowels, kidneys.

                                                                                As for the Ipi itself, Don had very few side effects. He did have some skin rashes, which were relieved by topical prescriptions.

                                                                                I hope our experience is helpful. Best of luck to you and your husband. I can't emphasize enough, just like everyone else on this Board, the importance of centralizing your care with a melanoma specialist. Not just someone who has treated melanoma, but a real specialist.

                                                                                And, you will also learn a lot from this group on the MPIP bulletin board. They are all awesome!

                                                                                Janet Lee

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