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Stage IIIb – Starting IPI in 6 weeks
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Stage IIIb – Starting IPI in 6 weeks

› Forums › General Melanoma Community › Stage IIIb – Starting IPI in 6 weeks

  • Post
    • January 31, 2016 at 12:23 pm
    jmm1052
    Participant

      I have read with great interest the topic on IIIa using IPI- my husband will start the 10g dose in 6 weeks. We have been told that at the moment there is no other treatment than interferon and no trials for his level. The possible side effects are pretty much zero which is phenomenal- if you do get any you are to report them immediately to the doctor as any of them can be life threatening. Since this was just approved in Dec 2015 I realize not many have had experience with it yet but I'd really like to hear from anyone who has actually done any treatments   My husband has Stage IIIb with no idea where it first presented. He felt a swelling in right groin area and it turned out to be melanoma- very large 5 cm and was removed along with all of the nodes in the area this month. We are waiting for it to heal before treatment begins. At the moment he is NED but we are seeing issues with fluid buildup from the complete dissection of the nodes in that area. Has anyone had experience with any of this? 

    Viewing 8 reply threads
    • Replies
        • January 31, 2016 at 3:09 pm
        gregor913
        Participant
          I’m not sure where you live. But ippi was approved for stage 3 in october. I’m currently taking the 10mg dose and finished my second one a week ago. So far side effects are I’ve been a little tired a few days after infusion. Tips when taking ippi. I’m on a probiotic so talk to your doctor about that and drink lots of water. I don’t drink any sugary pop drinks. Also ippi does have some side effects you really have to watch out for. Rash, colitis, hepatitis, and endocrine side effects. Sometimes it takes the lymph vessels a little longer to find a new path or he might be developing lymphodema. Talk to your doc about that. Good luck in your ippi treatment. Greg
            • January 31, 2016 at 11:59 pm
            jmm1052
            Participant

              Thanks for the info- it's very helpful. The doctor told us December it was approved so I'm glad it was October- there maybe I can find some more cases that have been successful. How long does the infusion process take each time? 

              • January 31, 2016 at 11:59 pm
              jmm1052
              Participant

                Thanks for the info- it's very helpful. The doctor told us December it was approved so I'm glad it was October- there maybe I can find some more cases that have been successful. How long does the infusion process take each time? 

                • February 1, 2016 at 2:12 am
                ed williams
                Participant

                  Hi jmm1052, Ipi was approved for stage 3 based on a european study called EORTC Trial 18071. If you google it plus the word ipilimumab you should find lots of information. The drug was first approved for stage 4 Melanoma back in 2011 and has a very good track record. When it works it seems to have very durable responses for the patients. Wishing you and your husband the best!!! Ed

                  • February 1, 2016 at 2:12 am
                  ed williams
                  Participant

                    Hi jmm1052, Ipi was approved for stage 3 based on a european study called EORTC Trial 18071. If you google it plus the word ipilimumab you should find lots of information. The drug was first approved for stage 4 Melanoma back in 2011 and has a very good track record. When it works it seems to have very durable responses for the patients. Wishing you and your husband the best!!! Ed

                    • February 1, 2016 at 11:57 pm
                    jmm1052
                    Participant

                      Thank you SO much! This is very very helpful – thank you for taking the time to send me this:)

                      Janet

                      • February 1, 2016 at 11:57 pm
                      jmm1052
                      Participant

                        Thank you SO much! This is very very helpful – thank you for taking the time to send me this:)

                        Janet

                        • February 1, 2016 at 11:57 pm
                        jmm1052
                        Participant

                          Thank you SO much! This is very very helpful – thank you for taking the time to send me this:)

                          Janet

                          • February 1, 2016 at 2:12 am
                          ed williams
                          Participant

                            Hi jmm1052, Ipi was approved for stage 3 based on a european study called EORTC Trial 18071. If you google it plus the word ipilimumab you should find lots of information. The drug was first approved for stage 4 Melanoma back in 2011 and has a very good track record. When it works it seems to have very durable responses for the patients. Wishing you and your husband the best!!! Ed

                            • February 1, 2016 at 2:12 am
                            ed williams
                            Participant

                              Hi jmm1052, Ipi was approved for stage 3 based on a european study called EORTC Trial 18071. If you google it plus the word ipilimumab you should find lots of information. The drug was first approved for stage 4 Melanoma back in 2011 and has a very good track record. When it works it seems to have very durable responses for the patients. Wishing you and your husband the best!!! Ed

                              • February 1, 2016 at 2:12 am
                              ed williams
                              Participant

                                Hi jmm1052, Ipi was approved for stage 3 based on a european study called EORTC Trial 18071. If you google it plus the word ipilimumab you should find lots of information. The drug was first approved for stage 4 Melanoma back in 2011 and has a very good track record. When it works it seems to have very durable responses for the patients. Wishing you and your husband the best!!! Ed

                                • February 1, 2016 at 2:12 am
                                ed williams
                                Participant

                                  Hi jmm1052, Ipi was approved for stage 3 based on a european study called EORTC Trial 18071. If you google it plus the word ipilimumab you should find lots of information. The drug was first approved for stage 4 Melanoma back in 2011 and has a very good track record. When it works it seems to have very durable responses for the patients. Wishing you and your husband the best!!! Ed

                                  • January 31, 2016 at 11:59 pm
                                  jmm1052
                                  Participant

                                    Thanks for the info- it's very helpful. The doctor told us December it was approved so I'm glad it was October- there maybe I can find some more cases that have been successful. How long does the infusion process take each time? 

                                  • January 31, 2016 at 3:09 pm
                                  gregor913
                                  Participant
                                    I’m not sure where you live. But ippi was approved for stage 3 in october. I’m currently taking the 10mg dose and finished my second one a week ago. So far side effects are I’ve been a little tired a few days after infusion. Tips when taking ippi. I’m on a probiotic so talk to your doctor about that and drink lots of water. I don’t drink any sugary pop drinks. Also ippi does have some side effects you really have to watch out for. Rash, colitis, hepatitis, and endocrine side effects. Sometimes it takes the lymph vessels a little longer to find a new path or he might be developing lymphodema. Talk to your doc about that. Good luck in your ippi treatment. Greg
                                    • January 31, 2016 at 3:09 pm
                                    gregor913
                                    Participant
                                      I’m not sure where you live. But ippi was approved for stage 3 in october. I’m currently taking the 10mg dose and finished my second one a week ago. So far side effects are I’ve been a little tired a few days after infusion. Tips when taking ippi. I’m on a probiotic so talk to your doctor about that and drink lots of water. I don’t drink any sugary pop drinks. Also ippi does have some side effects you really have to watch out for. Rash, colitis, hepatitis, and endocrine side effects. Sometimes it takes the lymph vessels a little longer to find a new path or he might be developing lymphodema. Talk to your doc about that. Good luck in your ippi treatment. Greg
                                      • January 31, 2016 at 8:30 pm
                                      jennunicorn
                                      Participant

                                        I am stage 3b and doing the ipi 10mg/kg treatment. I have done 3 rounds so far and have not had any major side effects come up. Mostly I have fatigue, but it is manageable. I had my sentinal lymph node biopsy in my groin in November and still have a very small amount of fluid build up under the incision. It was a lot worse after surgery and slowly my body is reabsorbing the fluid, which should be what will happen with your husband. You probably should have your husband see a lymphadema specialist and they can show him some massages and do whatever preventative exercises to keep him from developing lymphadema. 

                                        All the best,

                                        Jenn

                                          • February 1, 2016 at 12:51 am
                                          jmm1052
                                          Participant

                                            That's awesome- so happy for you! Now do you have the boosters every 3 months? My husband wanted me to ask how long the fatigue lasts. Also, how long does each infusion take? I'm so happy to hear the good results- we weren't sure what to expect as far as the fatigue- manageable is definitely a positive term. Thanks!

                                            • February 1, 2016 at 12:51 am
                                            jmm1052
                                            Participant

                                              That's awesome- so happy for you! Now do you have the boosters every 3 months? My husband wanted me to ask how long the fatigue lasts. Also, how long does each infusion take? I'm so happy to hear the good results- we weren't sure what to expect as far as the fatigue- manageable is definitely a positive term. Thanks!

                                              • February 1, 2016 at 1:19 am
                                              jennunicorn
                                              Participant

                                                Each infusion is 90 minutes. Once every 3 weeks for the first 4 infusions and then once every 3 months until the 1 year mark… that is if no side effects come up that would require someone to stop doing the treatment. 

                                                So, I have one more in a couple weeks and then I don't have to worry about another one until May, which is great. The fatigue lasts for about a week after the infusion and then I feel more like myself after that. 

                                                • February 1, 2016 at 1:19 am
                                                jennunicorn
                                                Participant

                                                  Each infusion is 90 minutes. Once every 3 weeks for the first 4 infusions and then once every 3 months until the 1 year mark… that is if no side effects come up that would require someone to stop doing the treatment. 

                                                  So, I have one more in a couple weeks and then I don't have to worry about another one until May, which is great. The fatigue lasts for about a week after the infusion and then I feel more like myself after that. 

                                                  • February 1, 2016 at 1:19 am
                                                  jennunicorn
                                                  Participant

                                                    Each infusion is 90 minutes. Once every 3 weeks for the first 4 infusions and then once every 3 months until the 1 year mark… that is if no side effects come up that would require someone to stop doing the treatment. 

                                                    So, I have one more in a couple weeks and then I don't have to worry about another one until May, which is great. The fatigue lasts for about a week after the infusion and then I feel more like myself after that. 

                                                    • February 1, 2016 at 12:14 pm
                                                    jmm1052
                                                    Participant

                                                      Thank you so much❤️

                                                      • February 1, 2016 at 12:14 pm
                                                      jmm1052
                                                      Participant

                                                        Thank you so much❤️

                                                        • February 1, 2016 at 12:14 pm
                                                        jmm1052
                                                        Participant

                                                          Thank you so much❤️

                                                          • February 1, 2016 at 12:51 am
                                                          jmm1052
                                                          Participant

                                                            That's awesome- so happy for you! Now do you have the boosters every 3 months? My husband wanted me to ask how long the fatigue lasts. Also, how long does each infusion take? I'm so happy to hear the good results- we weren't sure what to expect as far as the fatigue- manageable is definitely a positive term. Thanks!

                                                          • January 31, 2016 at 8:30 pm
                                                          jennunicorn
                                                          Participant

                                                            I am stage 3b and doing the ipi 10mg/kg treatment. I have done 3 rounds so far and have not had any major side effects come up. Mostly I have fatigue, but it is manageable. I had my sentinal lymph node biopsy in my groin in November and still have a very small amount of fluid build up under the incision. It was a lot worse after surgery and slowly my body is reabsorbing the fluid, which should be what will happen with your husband. You probably should have your husband see a lymphadema specialist and they can show him some massages and do whatever preventative exercises to keep him from developing lymphadema. 

                                                            All the best,

                                                            Jenn

                                                            • January 31, 2016 at 8:30 pm
                                                            jennunicorn
                                                            Participant

                                                              I am stage 3b and doing the ipi 10mg/kg treatment. I have done 3 rounds so far and have not had any major side effects come up. Mostly I have fatigue, but it is manageable. I had my sentinal lymph node biopsy in my groin in November and still have a very small amount of fluid build up under the incision. It was a lot worse after surgery and slowly my body is reabsorbing the fluid, which should be what will happen with your husband. You probably should have your husband see a lymphadema specialist and they can show him some massages and do whatever preventative exercises to keep him from developing lymphadema. 

                                                              All the best,

                                                              Jenn

                                                              • February 1, 2016 at 11:07 pm
                                                              MoiraM
                                                              Participant

                                                                I was diagnosed with Stage III and have been treated with Ipi. Even though I was unlucky with side effects (diarrhoea, rash and finally damage to my anterior pituitary), I managed to avoid being admitted to hospital throughout and I have had a respose – my tumours have shrunk. Six months later I have had one more outbreak of the skin rash and my anterior pituitary has not recovered – it probably never will. However those tumours have kept shrinking!

                                                                • February 1, 2016 at 11:07 pm
                                                                MoiraM
                                                                Participant

                                                                  I was diagnosed with Stage III and have been treated with Ipi. Even though I was unlucky with side effects (diarrhoea, rash and finally damage to my anterior pituitary), I managed to avoid being admitted to hospital throughout and I have had a respose – my tumours have shrunk. Six months later I have had one more outbreak of the skin rash and my anterior pituitary has not recovered – it probably never will. However those tumours have kept shrinking!

                                                                  • February 1, 2016 at 11:07 pm
                                                                  MoiraM
                                                                  Participant

                                                                    I was diagnosed with Stage III and have been treated with Ipi. Even though I was unlucky with side effects (diarrhoea, rash and finally damage to my anterior pituitary), I managed to avoid being admitted to hospital throughout and I have had a respose – my tumours have shrunk. Six months later I have had one more outbreak of the skin rash and my anterior pituitary has not recovered – it probably never will. However those tumours have kept shrinking!

                                                                      • February 2, 2016 at 12:04 am
                                                                      jmm1052
                                                                      Participant

                                                                        That's great that they didn't take you off of it. I guess it's a trade-off of the side effects vs tumor shrinkage? I'd pick the tumor shrinking also! Good luck to you and please let me know how you are coming along. All the best! 

                                                                        Janet

                                                                        • February 2, 2016 at 12:04 am
                                                                        jmm1052
                                                                        Participant

                                                                          That's great that they didn't take you off of it. I guess it's a trade-off of the side effects vs tumor shrinkage? I'd pick the tumor shrinking also! Good luck to you and please let me know how you are coming along. All the best! 

                                                                          Janet

                                                                          • February 2, 2016 at 12:04 am
                                                                          jmm1052
                                                                          Participant

                                                                            That's great that they didn't take you off of it. I guess it's a trade-off of the side effects vs tumor shrinkage? I'd pick the tumor shrinking also! Good luck to you and please let me know how you are coming along. All the best! 

                                                                            Janet

                                                                            • February 2, 2016 at 8:52 pm
                                                                            jmm1052
                                                                            Participant

                                                                              Did they take you off the infusion when the symptoms occurred or did they let you continue? His oncologist made it sound like as soon as you get some kind of symptom they can link to the drug- you are done. 

                                                                              • February 2, 2016 at 8:52 pm
                                                                              jmm1052
                                                                              Participant

                                                                                Did they take you off the infusion when the symptoms occurred or did they let you continue? His oncologist made it sound like as soon as you get some kind of symptom they can link to the drug- you are done. 

                                                                                • February 2, 2016 at 8:52 pm
                                                                                jmm1052
                                                                                Participant

                                                                                  Did they take you off the infusion when the symptoms occurred or did they let you continue? His oncologist made it sound like as soon as you get some kind of symptom they can link to the drug- you are done. 

                                                                                  • February 2, 2016 at 11:33 pm
                                                                                  MoiraM
                                                                                  Participant

                                                                                    I am being treated in the UK. My melanoma team let me manage the colitis with immodium provided the diarrhoea was not bloody. They gave me hydrocortisone cream for the 'ipi rash'. I only developed the extreme tiredness and the inflammation of the anterior pituitary after my fourth treatment, which was the last planned. Even then I wasn't admitted. I just started on hormone (thyroxine and prednisolone) pills.

                                                                                    I know some people suffer more with side effects from ipi than I did but, to me, the side effects I experienced were minor compared the chemotherapy side effects patients with other cancers were experiencing.

                                                                                    • February 4, 2016 at 3:37 am
                                                                                    Marianne quinn
                                                                                    Participant

                                                                                      Please check some of my posts regarding how my husband managed his 10 mg ipi journey..NED for 2 years

                                                                                       

                                                                                      • February 4, 2016 at 3:37 am
                                                                                      Marianne quinn
                                                                                      Participant

                                                                                        Please check some of my posts regarding how my husband managed his 10 mg ipi journey..NED for 2 years

                                                                                         

                                                                                        • February 4, 2016 at 3:37 am
                                                                                        Marianne quinn
                                                                                        Participant

                                                                                          Please check some of my posts regarding how my husband managed his 10 mg ipi journey..NED for 2 years

                                                                                           

                                                                                          • February 4, 2016 at 3:37 am
                                                                                          Marianne quinn
                                                                                          Participant

                                                                                            Please check some of my posts regarding how my husband managed his 10 mg ipi journey..NED for 2 years

                                                                                             

                                                                                            • February 5, 2016 at 1:41 am
                                                                                            jmm1052
                                                                                            Participant

                                                                                              Thank you! Lots of great info!

                                                                                              • February 5, 2016 at 1:41 am
                                                                                              jmm1052
                                                                                              Participant

                                                                                                Thank you! Lots of great info!

                                                                                                • February 5, 2016 at 1:41 am
                                                                                                jmm1052
                                                                                                Participant

                                                                                                  Thank you! Lots of great info!

                                                                                                  • February 4, 2016 at 3:37 am
                                                                                                  Marianne quinn
                                                                                                  Participant

                                                                                                    Please check some of my posts regarding how my husband managed his 10 mg ipi journey..NED for 2 years

                                                                                                     

                                                                                                    • February 4, 2016 at 3:37 am
                                                                                                    Marianne quinn
                                                                                                    Participant

                                                                                                      Please check some of my posts regarding how my husband managed his 10 mg ipi journey..NED for 2 years

                                                                                                       

                                                                                                      • February 5, 2016 at 1:04 am
                                                                                                      jmm1052
                                                                                                      Participant

                                                                                                        Sounds like it was manageable and that is very encouraging! Are you going to start the boosters every three months? Thank you so much for this info! 

                                                                                                        Janet

                                                                                                        • February 5, 2016 at 1:04 am
                                                                                                        jmm1052
                                                                                                        Participant

                                                                                                          Sounds like it was manageable and that is very encouraging! Are you going to start the boosters every three months? Thank you so much for this info! 

                                                                                                          Janet

                                                                                                          • February 5, 2016 at 1:04 am
                                                                                                          jmm1052
                                                                                                          Participant

                                                                                                            Sounds like it was manageable and that is very encouraging! Are you going to start the boosters every three months? Thank you so much for this info! 

                                                                                                            Janet

                                                                                                            • February 2, 2016 at 11:33 pm
                                                                                                            MoiraM
                                                                                                            Participant

                                                                                                              I am being treated in the UK. My melanoma team let me manage the colitis with immodium provided the diarrhoea was not bloody. They gave me hydrocortisone cream for the 'ipi rash'. I only developed the extreme tiredness and the inflammation of the anterior pituitary after my fourth treatment, which was the last planned. Even then I wasn't admitted. I just started on hormone (thyroxine and prednisolone) pills.

                                                                                                              I know some people suffer more with side effects from ipi than I did but, to me, the side effects I experienced were minor compared the chemotherapy side effects patients with other cancers were experiencing.

                                                                                                              • February 2, 2016 at 11:33 pm
                                                                                                              MoiraM
                                                                                                              Participant

                                                                                                                I am being treated in the UK. My melanoma team let me manage the colitis with immodium provided the diarrhoea was not bloody. They gave me hydrocortisone cream for the 'ipi rash'. I only developed the extreme tiredness and the inflammation of the anterior pituitary after my fourth treatment, which was the last planned. Even then I wasn't admitted. I just started on hormone (thyroxine and prednisolone) pills.

                                                                                                                I know some people suffer more with side effects from ipi than I did but, to me, the side effects I experienced were minor compared the chemotherapy side effects patients with other cancers were experiencing.

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