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4th Ipi (10mg/kg) Infusion Done!
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4th Ipi (10mg/kg) Infusion Done!

› Forums › General Melanoma Community › 4th Ipi (10mg/kg) Infusion Done!

  • Post
    • February 19, 2016 at 9:21 pm
    jennunicorn
    Participant

      Had my 4th infusion of ipi (Yervoy) yesterday. I am so glad I have been able to make it through this treatment with mild side effects. Going into it I was nervous as I am sure most would be just because of all of the possible scary side effects. I trusted in my body that I'd be able to handle anything that came up during this time. Keeping fingers and toes crossed nothing decides to sneak up now.

      My oncologist is also very happy and kind of surprised at how well I have done. She is having me do the maintanence doses, so now I will have 1 infusion of ipi (same 10mg/kg) every 3 months until it has been a year. So, my next one is May 19. Then one in August and one in November and THEN I can really get excited about being DONE with ipi. 

      My PET scan is in 3 weeks… of course that is always nerve wracking for any of us. I am hopeful it will be clean like it was 3 months ago. Just have to stay positive no matter what comes up.

      Really tired today and my joints have been aching lately. The joint thing is not new for me, I have mild arthritis (joint issues came up for me a year and a half ago.. long before melanoma was in my life and at the time it was the biggest health issue I'd ever dealt with) and I think the ipi has just flared it up a bit like it does with my eczema. Nothing I can't handle. 

      Hope everyone else going through ipi gets through it with ease as well.

      All the best to everyone on here,

      Jenn

    Viewing 20 reply threads
    • Replies
        • February 19, 2016 at 10:02 pm
        BrianP
        Participant

          Congrats Jenn!  It seems like you just had your first infusion yesterday.  I would say time flies when you're having fun but that's really not very applicable to this situation is it. 

          Hope the joint pain subsides as you get further from the treatments.  Looking forward to hearing your scan results in a few weeks.

          Brian

           

          • February 19, 2016 at 10:02 pm
          BrianP
          Participant

            Congrats Jenn!  It seems like you just had your first infusion yesterday.  I would say time flies when you're having fun but that's really not very applicable to this situation is it. 

            Hope the joint pain subsides as you get further from the treatments.  Looking forward to hearing your scan results in a few weeks.

            Brian

             

            • February 19, 2016 at 10:02 pm
            BrianP
            Participant

              Congrats Jenn!  It seems like you just had your first infusion yesterday.  I would say time flies when you're having fun but that's really not very applicable to this situation is it. 

              Hope the joint pain subsides as you get further from the treatments.  Looking forward to hearing your scan results in a few weeks.

              Brian

               

              • February 19, 2016 at 10:25 pm
              jenny22
              Participant

                Congratulations Jenn on making it through ALL 4 treatments….with somewhat manageable side effecs.

                Keeping my fingerss crossed now for good pet scan in a few weeks.

                Will be looking for your GOOD NEWS POST!!!

                best,

                jenny

                • February 19, 2016 at 10:25 pm
                jenny22
                Participant

                  Congratulations Jenn on making it through ALL 4 treatments….with somewhat manageable side effecs.

                  Keeping my fingerss crossed now for good pet scan in a few weeks.

                  Will be looking for your GOOD NEWS POST!!!

                  best,

                  jenny

                    • February 19, 2016 at 10:26 pm
                    jennunicorn
                    Participant

                      Thanks so much Jenny!

                      • February 19, 2016 at 10:26 pm
                      jennunicorn
                      Participant

                        Thanks so much Jenny!

                        • February 19, 2016 at 10:26 pm
                        jennunicorn
                        Participant

                          Thanks so much Jenny!

                        • February 19, 2016 at 10:25 pm
                        jenny22
                        Participant

                          Congratulations Jenn on making it through ALL 4 treatments….with somewhat manageable side effecs.

                          Keeping my fingerss crossed now for good pet scan in a few weeks.

                          Will be looking for your GOOD NEWS POST!!!

                          best,

                          jenny

                          • February 19, 2016 at 10:33 pm
                          Scooby123
                          Participant

                            Hi Jenn,

                            so glad you have completed ippi and hope scans go well for you. May I ask where you are from, i have completed ippi last June 2015 with no problems and did well 50% reduction but in our country we only get the 4 doses and that is it. I would love  to do maintanence dose feel I would benifit it . Just looking in to where and who might give it in uk. Keytruda my consultant said if progress, but feel would have a good chance ippi helping more at present. So frustrating when different country's  have different ways with giving treatment.

                            well done and take care

                            scooby123❤️

                            • February 19, 2016 at 10:33 pm
                            Scooby123
                            Participant

                              Hi Jenn,

                              so glad you have completed ippi and hope scans go well for you. May I ask where you are from, i have completed ippi last June 2015 with no problems and did well 50% reduction but in our country we only get the 4 doses and that is it. I would love  to do maintanence dose feel I would benifit it . Just looking in to where and who might give it in uk. Keytruda my consultant said if progress, but feel would have a good chance ippi helping more at present. So frustrating when different country's  have different ways with giving treatment.

                              well done and take care

                              scooby123❤️

                                • February 19, 2016 at 10:45 pm
                                jennunicorn
                                Participant

                                  I agree that is very frusterating seeing how different countries go about doing the same treatment in different ways. I am in the U.S., California. I know other people on here in the U.S. also have not been offered maintanence doses either. It may depend on the oncologist and/or insurance. Maybe some doctors don't think it would help at all. My oncologist feels like I've done great, there is no reason for me not to do maintanence doses. She never really even mentioned me ever NOT doing them, unless of course I needed to stop for treatment of side effects. I certainly feel like I will take it as long as my body is still ok getting it. The more I can do to increase the prevention of recurrence then I am all for it. I also don't know if it depends on the stage of the patient as well. Could be something you can ask your doctor about, see what they say about it. Hope all the best for you Scooby!

                                  • February 19, 2016 at 10:45 pm
                                  jennunicorn
                                  Participant

                                    I agree that is very frusterating seeing how different countries go about doing the same treatment in different ways. I am in the U.S., California. I know other people on here in the U.S. also have not been offered maintanence doses either. It may depend on the oncologist and/or insurance. Maybe some doctors don't think it would help at all. My oncologist feels like I've done great, there is no reason for me not to do maintanence doses. She never really even mentioned me ever NOT doing them, unless of course I needed to stop for treatment of side effects. I certainly feel like I will take it as long as my body is still ok getting it. The more I can do to increase the prevention of recurrence then I am all for it. I also don't know if it depends on the stage of the patient as well. Could be something you can ask your doctor about, see what they say about it. Hope all the best for you Scooby!

                                    • February 19, 2016 at 10:45 pm
                                    jennunicorn
                                    Participant

                                      I agree that is very frusterating seeing how different countries go about doing the same treatment in different ways. I am in the U.S., California. I know other people on here in the U.S. also have not been offered maintanence doses either. It may depend on the oncologist and/or insurance. Maybe some doctors don't think it would help at all. My oncologist feels like I've done great, there is no reason for me not to do maintanence doses. She never really even mentioned me ever NOT doing them, unless of course I needed to stop for treatment of side effects. I certainly feel like I will take it as long as my body is still ok getting it. The more I can do to increase the prevention of recurrence then I am all for it. I also don't know if it depends on the stage of the patient as well. Could be something you can ask your doctor about, see what they say about it. Hope all the best for you Scooby!

                                      • February 20, 2016 at 10:51 am
                                      MoiraM
                                      Participant

                                        Hi scooby123. I have answered the other question that you asked me under 'Did scan yesterday' which is now on page 2. I agree with your consultant. I think that Ipi is a 'one off' treatment. Also, those 50% shrunk tumours may still be being attacked by your activated T-cells. Do you want to correspond one-to-one about UK stuff? I cannot get the private messaging service to work but I could come up with a one-off email address to post so that we could get in touch.

                                         

                                        • February 20, 2016 at 10:51 am
                                        MoiraM
                                        Participant

                                          Hi scooby123. I have answered the other question that you asked me under 'Did scan yesterday' which is now on page 2. I agree with your consultant. I think that Ipi is a 'one off' treatment. Also, those 50% shrunk tumours may still be being attacked by your activated T-cells. Do you want to correspond one-to-one about UK stuff? I cannot get the private messaging service to work but I could come up with a one-off email address to post so that we could get in touch.

                                           

                                          • February 20, 2016 at 3:23 pm
                                          Scooby123
                                          Participant

                                            MoiraM,

                                            Hi,

                                            that would be great to speak too you regarding treatments ect, I will try and see if I can email you direct from here if not I do not mind putting my details down not sure if it is allowed but love to be able to connect with some one in uk  it would be helpful.

                                            Scooby123❤️

                                            • February 20, 2016 at 3:23 pm
                                            Scooby123
                                            Participant

                                              MoiraM,

                                              Hi,

                                              that would be great to speak too you regarding treatments ect, I will try and see if I can email you direct from here if not I do not mind putting my details down not sure if it is allowed but love to be able to connect with some one in uk  it would be helpful.

                                              Scooby123❤️

                                              • February 20, 2016 at 4:07 pm
                                              MoiraM
                                              Participant

                                                This an email address don't mind putting on the web because I can close it down if I start getting spam on it. [email protected]

                                                • February 20, 2016 at 4:07 pm
                                                MoiraM
                                                Participant

                                                  This an email address don't mind putting on the web because I can close it down if I start getting spam on it. [email protected]

                                                  • February 20, 2016 at 4:07 pm
                                                  MoiraM
                                                  Participant

                                                    This an email address don't mind putting on the web because I can close it down if I start getting spam on it. [email protected]

                                                    • February 20, 2016 at 3:23 pm
                                                    Scooby123
                                                    Participant

                                                      MoiraM,

                                                      Hi,

                                                      that would be great to speak too you regarding treatments ect, I will try and see if I can email you direct from here if not I do not mind putting my details down not sure if it is allowed but love to be able to connect with some one in uk  it would be helpful.

                                                      Scooby123❤️

                                                      • February 20, 2016 at 10:51 am
                                                      MoiraM
                                                      Participant

                                                        Hi scooby123. I have answered the other question that you asked me under 'Did scan yesterday' which is now on page 2. I agree with your consultant. I think that Ipi is a 'one off' treatment. Also, those 50% shrunk tumours may still be being attacked by your activated T-cells. Do you want to correspond one-to-one about UK stuff? I cannot get the private messaging service to work but I could come up with a one-off email address to post so that we could get in touch.

                                                         

                                                      • February 19, 2016 at 10:33 pm
                                                      Scooby123
                                                      Participant

                                                        Hi Jenn,

                                                        so glad you have completed ippi and hope scans go well for you. May I ask where you are from, i have completed ippi last June 2015 with no problems and did well 50% reduction but in our country we only get the 4 doses and that is it. I would love  to do maintanence dose feel I would benifit it . Just looking in to where and who might give it in uk. Keytruda my consultant said if progress, but feel would have a good chance ippi helping more at present. So frustrating when different country's  have different ways with giving treatment.

                                                        well done and take care

                                                        scooby123❤️

                                                        • February 20, 2016 at 5:02 am
                                                        gregor913
                                                        Participant
                                                          Congrats I have one more left myself. Seems like the itching happens the first few days after infusion then dies down. Hoping I can finish with minimal side effects and I will be finished. Cheers Greg
                                                          • February 20, 2016 at 5:02 am
                                                          gregor913
                                                          Participant
                                                            Congrats I have one more left myself. Seems like the itching happens the first few days after infusion then dies down. Hoping I can finish with minimal side effects and I will be finished. Cheers Greg
                                                              • February 20, 2016 at 5:17 pm
                                                              jennunicorn
                                                              Participant

                                                                Glad you're doing well Greg! It will be over before you know it 🙂

                                                                • February 20, 2016 at 5:17 pm
                                                                jennunicorn
                                                                Participant

                                                                  Glad you're doing well Greg! It will be over before you know it 🙂

                                                                  • February 20, 2016 at 5:17 pm
                                                                  jennunicorn
                                                                  Participant

                                                                    Glad you're doing well Greg! It will be over before you know it 🙂

                                                                  • February 20, 2016 at 5:02 am
                                                                  gregor913
                                                                  Participant
                                                                    Congrats I have one more left myself. Seems like the itching happens the first few days after infusion then dies down. Hoping I can finish with minimal side effects and I will be finished. Cheers Greg
                                                                    • February 20, 2016 at 10:57 am
                                                                    MoiraM
                                                                    Participant

                                                                      Hi Jenn

                                                                      I have been treated with Ipi. Just 3mg/kg in my case (I am in in the UK) but I am a responder. I had much worse side effects than you (I have lost anterior pituitary function) but it was well worth it.

                                                                      Good luck with the scans!

                                                                      All the best

                                                                      Moira

                                                                      • February 20, 2016 at 10:57 am
                                                                      MoiraM
                                                                      Participant

                                                                        Hi Jenn

                                                                        I have been treated with Ipi. Just 3mg/kg in my case (I am in in the UK) but I am a responder. I had much worse side effects than you (I have lost anterior pituitary function) but it was well worth it.

                                                                        Good luck with the scans!

                                                                        All the best

                                                                        Moira

                                                                          • February 20, 2016 at 5:16 pm
                                                                          jennunicorn
                                                                          Participant

                                                                            Glad you are a responder to ipi, not fun having to deal with a more serious side effect but sometimes we have to do a trade off, right? Glad it has worked out for you!

                                                                            • February 20, 2016 at 5:16 pm
                                                                            jennunicorn
                                                                            Participant

                                                                              Glad you are a responder to ipi, not fun having to deal with a more serious side effect but sometimes we have to do a trade off, right? Glad it has worked out for you!

                                                                              • February 20, 2016 at 5:16 pm
                                                                              jennunicorn
                                                                              Participant

                                                                                Glad you are a responder to ipi, not fun having to deal with a more serious side effect but sometimes we have to do a trade off, right? Glad it has worked out for you!

                                                                              • February 20, 2016 at 10:57 am
                                                                              MoiraM
                                                                              Participant

                                                                                Hi Jenn

                                                                                I have been treated with Ipi. Just 3mg/kg in my case (I am in in the UK) but I am a responder. I had much worse side effects than you (I have lost anterior pituitary function) but it was well worth it.

                                                                                Good luck with the scans!

                                                                                All the best

                                                                                Moira

                                                                                • February 20, 2016 at 1:14 pm
                                                                                keepthefaith11
                                                                                Participant
                                                                                  Jenn, so happy you have gotten through this with hardly any side effects! I have also been wondering about continuing every three months, if there are no side effects. I don’t see why that wouldn’t be normal protocol for everybody. Glad your doctor agrees and that your insurance pays for it. Depending on how things go for my dad that is what I will be pushing for as well. The few side effects you had when did they start showing up?
                                                                                  • February 20, 2016 at 1:14 pm
                                                                                  keepthefaith11
                                                                                  Participant
                                                                                    Jenn, so happy you have gotten through this with hardly any side effects! I have also been wondering about continuing every three months, if there are no side effects. I don’t see why that wouldn’t be normal protocol for everybody. Glad your doctor agrees and that your insurance pays for it. Depending on how things go for my dad that is what I will be pushing for as well. The few side effects you had when did they start showing up?
                                                                                      • February 20, 2016 at 5:14 pm
                                                                                      jennunicorn
                                                                                      Participant

                                                                                        Thank you. The side effect I mainly have is fatigue, it happened after the first infusion, for the first week I'd say after each infusion I am pretty tired. My eczema flare ups also happened right away, that is worst the first couple days after an infusion. And the joint aching started after the 3rd one. Hope it goes well for your dad!

                                                                                        • February 20, 2016 at 5:14 pm
                                                                                        jennunicorn
                                                                                        Participant

                                                                                          Thank you. The side effect I mainly have is fatigue, it happened after the first infusion, for the first week I'd say after each infusion I am pretty tired. My eczema flare ups also happened right away, that is worst the first couple days after an infusion. And the joint aching started after the 3rd one. Hope it goes well for your dad!

                                                                                          • February 20, 2016 at 5:14 pm
                                                                                          jennunicorn
                                                                                          Participant

                                                                                            Thank you. The side effect I mainly have is fatigue, it happened after the first infusion, for the first week I'd say after each infusion I am pretty tired. My eczema flare ups also happened right away, that is worst the first couple days after an infusion. And the joint aching started after the 3rd one. Hope it goes well for your dad!

                                                                                            • February 20, 2016 at 5:55 pm
                                                                                            keepthefaith11
                                                                                            Participant
                                                                                              Thanks Jenn. So I guess a reaction can happen immediately. I was not sure about that. My dad has not noticed anything. Actually he says he feels better than ever! It has only been 9 days though. He is staying out of enclosed public places, like the kids basketball games. Just to be on the safe side.
                                                                                              • February 20, 2016 at 5:55 pm
                                                                                              keepthefaith11
                                                                                              Participant
                                                                                                Thanks Jenn. So I guess a reaction can happen immediately. I was not sure about that. My dad has not noticed anything. Actually he says he feels better than ever! It has only been 9 days though. He is staying out of enclosed public places, like the kids basketball games. Just to be on the safe side.
                                                                                                • February 20, 2016 at 5:55 pm
                                                                                                keepthefaith11
                                                                                                Participant
                                                                                                  Thanks Jenn. So I guess a reaction can happen immediately. I was not sure about that. My dad has not noticed anything. Actually he says he feels better than ever! It has only been 9 days though. He is staying out of enclosed public places, like the kids basketball games. Just to be on the safe side.
                                                                                                • February 20, 2016 at 1:14 pm
                                                                                                keepthefaith11
                                                                                                Participant
                                                                                                  Jenn, so happy you have gotten through this with hardly any side effects! I have also been wondering about continuing every three months, if there are no side effects. I don’t see why that wouldn’t be normal protocol for everybody. Glad your doctor agrees and that your insurance pays for it. Depending on how things go for my dad that is what I will be pushing for as well. The few side effects you had when did they start showing up?
                                                                                                  • February 20, 2016 at 9:19 pm
                                                                                                  Eileensulliv
                                                                                                  Participant

                                                                                                    Congrats, Jen! What a great feeling, eh? I wish you the best with all of this! Time to celebrate (once your joints allow you to move, that is!) 🙂

                                                                                                    • February 20, 2016 at 9:19 pm
                                                                                                    Eileensulliv
                                                                                                    Participant

                                                                                                      Congrats, Jen! What a great feeling, eh? I wish you the best with all of this! Time to celebrate (once your joints allow you to move, that is!) 🙂

                                                                                                      • February 20, 2016 at 9:19 pm
                                                                                                      Eileensulliv
                                                                                                      Participant

                                                                                                        Congrats, Jen! What a great feeling, eh? I wish you the best with all of this! Time to celebrate (once your joints allow you to move, that is!) 🙂

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