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Scared! Starting ipi tomorrow
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Scared! Starting ipi tomorrow

› Forums › General Melanoma Community › Scared! Starting ipi tomorrow

  • Post
    • January 1, 2017 at 12:51 pm
    MichelleRHG
    Participant
      I’m having my 1st infusion of ipi (10 mg) tomorrow and am scared to death. Am stage 3b and drew this arm of trial. Was hoping for pembro.

      Any advice or encouragement?

      Also, my PET scan was clear last week except for my groin where I had lymph nodes out Nov. 9th. Onc won’t discuss with me until tomorrow but has anyone else had experience with inflammation from surgery lighting up on scan?

      Hoping everyone has a blessed year.

    Viewing 14 reply threads
    • Replies
        • January 1, 2017 at 2:42 pm
        Gene_S
        Participant

          Hi Michelle,

          Are you scared because it is Ipi you will be getting?  Everyones body reacts differently and you should not start scared just wait and see if you get any side effects at all or maybe just a few light one.

          My husband was Stage IV and started the Ipi trial in Mar. 2011 and became NED in July 2012 while on maintenance doses.  He had a few side effects but you can get side effects from any drug.  He is 4.5 years NED and I am thrilled he is still here.  You can read his profile and find out more about his journey.

          Judy (loving wife of Gene Stage IV and now NED for over 4.5 years on Ipi and GM-CSF Clinical Trial started in Mar. 2011)

          • January 1, 2017 at 2:42 pm
          Gene_S
          Participant

            Hi Michelle,

            Are you scared because it is Ipi you will be getting?  Everyones body reacts differently and you should not start scared just wait and see if you get any side effects at all or maybe just a few light one.

            My husband was Stage IV and started the Ipi trial in Mar. 2011 and became NED in July 2012 while on maintenance doses.  He had a few side effects but you can get side effects from any drug.  He is 4.5 years NED and I am thrilled he is still here.  You can read his profile and find out more about his journey.

            Judy (loving wife of Gene Stage IV and now NED for over 4.5 years on Ipi and GM-CSF Clinical Trial started in Mar. 2011)

              • January 1, 2017 at 3:08 pm
              MichelleRHG
              Participant
                Yes, scared because it’s ipi. Thank you for responding. I’m so glad your husband is doing well.
                • January 1, 2017 at 3:08 pm
                MichelleRHG
                Participant
                  Yes, scared because it’s ipi. Thank you for responding. I’m so glad your husband is doing well.
                  • January 1, 2017 at 3:08 pm
                  MichelleRHG
                  Participant
                    Yes, scared because it’s ipi. Thank you for responding. I’m so glad your husband is doing well.
                  • January 1, 2017 at 2:42 pm
                  Gene_S
                  Participant

                    Hi Michelle,

                    Are you scared because it is Ipi you will be getting?  Everyones body reacts differently and you should not start scared just wait and see if you get any side effects at all or maybe just a few light one.

                    My husband was Stage IV and started the Ipi trial in Mar. 2011 and became NED in July 2012 while on maintenance doses.  He had a few side effects but you can get side effects from any drug.  He is 4.5 years NED and I am thrilled he is still here.  You can read his profile and find out more about his journey.

                    Judy (loving wife of Gene Stage IV and now NED for over 4.5 years on Ipi and GM-CSF Clinical Trial started in Mar. 2011)

                    • January 1, 2017 at 3:08 pm
                    Janner
                    Participant

                      Can't comment on the ipi, but PET scans show increased metabolic activity.  If you are healing from any trauma, have arthritis or other inflammation – those conditions will show up on a pet.  Cancer tumors do as well.  All conditions can show high metabolic activity.  For your PET scan to show activity in your groin lymph node basin after the lymph nodes were removed 7 weeks ago is probably not surprising.

                      • January 1, 2017 at 3:08 pm
                      Janner
                      Participant

                        Can't comment on the ipi, but PET scans show increased metabolic activity.  If you are healing from any trauma, have arthritis or other inflammation – those conditions will show up on a pet.  Cancer tumors do as well.  All conditions can show high metabolic activity.  For your PET scan to show activity in your groin lymph node basin after the lymph nodes were removed 7 weeks ago is probably not surprising.

                        • January 1, 2017 at 3:08 pm
                        Janner
                        Participant

                          Can't comment on the ipi, but PET scans show increased metabolic activity.  If you are healing from any trauma, have arthritis or other inflammation – those conditions will show up on a pet.  Cancer tumors do as well.  All conditions can show high metabolic activity.  For your PET scan to show activity in your groin lymph node basin after the lymph nodes were removed 7 weeks ago is probably not surprising.

                          • January 1, 2017 at 5:12 pm
                          ed williams
                          Participant

                            Hi Michelle RHG, I have a presentation from ESMO 2016 where Prof.Eggermont presents data from the trial 18071 of Ipi vs Placebo for stage 3 melanoma. Two things to take from the presentation that I find pretty important is that reduction of death in the two groups is large for ipi patients and second and something I hope your Oncologist and there team has you ready for is side effects especially Colitis. Something to consider as a benefit of being in a trial is how closely you will be followed and scanned. Many of us that have been parts of trials did so for the hope of benefit but don't forget what you are doing is going to make a difference in the future, like the people that were part of the trial 18071. So a big thank you for being brave and best wishes for good results!!!Ed

                            • January 1, 2017 at 5:12 pm
                            ed williams
                            Participant

                              Hi Michelle RHG, I have a presentation from ESMO 2016 where Prof.Eggermont presents data from the trial 18071 of Ipi vs Placebo for stage 3 melanoma. Two things to take from the presentation that I find pretty important is that reduction of death in the two groups is large for ipi patients and second and something I hope your Oncologist and there team has you ready for is side effects especially Colitis. Something to consider as a benefit of being in a trial is how closely you will be followed and scanned. Many of us that have been parts of trials did so for the hope of benefit but don't forget what you are doing is going to make a difference in the future, like the people that were part of the trial 18071. So a big thank you for being brave and best wishes for good results!!!Ed

                              • January 1, 2017 at 5:12 pm
                              ed williams
                              Participant

                                Hi Michelle RHG, I have a presentation from ESMO 2016 where Prof.Eggermont presents data from the trial 18071 of Ipi vs Placebo for stage 3 melanoma. Two things to take from the presentation that I find pretty important is that reduction of death in the two groups is large for ipi patients and second and something I hope your Oncologist and there team has you ready for is side effects especially Colitis. Something to consider as a benefit of being in a trial is how closely you will be followed and scanned. Many of us that have been parts of trials did so for the hope of benefit but don't forget what you are doing is going to make a difference in the future, like the people that were part of the trial 18071. So a big thank you for being brave and best wishes for good results!!!Ed

                                • January 1, 2017 at 7:10 pm
                                jennunicorn
                                Participant

                                  I will add to the others in saying, don't go into it scared. All drugs have side effects, and all of the immunotherapy drugs have very similar ones, it's just that with Ipi there are higher reports of certain ones. I did Ipi at 10mg, got through all 4 main doses and even 2 maintanence doses. I never had a serious side effect. I had a recurrance so that's why I am on Ipi/Nivo combo now, but just finished the 4th dose of that and so far so good with minimal side effects. So, just remember, side effects are NOT a given. Every person's body reacts individually. 

                                  I have taken a good probiotic the whole time, I don't know if that has helped ward off bad stomach side effects, but that's something you could start taking if you're not already.

                                  Remember to contact your onc's office with anything that feels abnormal, they don't care how often you bug them, if something does come up and they know about it quickly then they can treat it quickly before it becomes serious.

                                  All the best,

                                    • January 1, 2017 at 7:15 pm
                                    MichelleRHG
                                    Participant
                                      Thank you. I hope they don’t mind how often I call because everything I read says stay on top of the side effects. What probiotic do you use? I mentioned them to onc before in a text but didn’t get much response.
                                      • January 1, 2017 at 7:15 pm
                                      MichelleRHG
                                      Participant
                                        Thank you. I hope they don’t mind how often I call because everything I read says stay on top of the side effects. What probiotic do you use? I mentioned them to onc before in a text but didn’t get much response.
                                        • January 1, 2017 at 7:15 pm
                                        MichelleRHG
                                        Participant
                                          Thank you. I hope they don’t mind how often I call because everything I read says stay on top of the side effects. What probiotic do you use? I mentioned them to onc before in a text but didn’t get much response.
                                          • January 1, 2017 at 7:21 pm
                                          jennunicorn
                                          Participant

                                            I take EPS Jarro-Dophilus, I buy it on Amazon:

                                            Is your oncologist a melanoma oncologist?

                                            • January 1, 2017 at 7:21 pm
                                            jennunicorn
                                            Participant

                                              I take EPS Jarro-Dophilus, I buy it on Amazon:

                                              Is your oncologist a melanoma oncologist?

                                              • January 1, 2017 at 8:14 pm
                                              MichelleRHG
                                              Participant
                                                My local one is not. I went to MD Anderson though for consult and they said do this trial. Can do trial locally. I’d anything changes I will be back in Texas in a heartbeat.
                                                • January 1, 2017 at 8:14 pm
                                                MichelleRHG
                                                Participant
                                                  My local one is not. I went to MD Anderson though for consult and they said do this trial. Can do trial locally. I’d anything changes I will be back in Texas in a heartbeat.
                                                  • January 1, 2017 at 8:14 pm
                                                  MichelleRHG
                                                  Participant
                                                    My local one is not. I went to MD Anderson though for consult and they said do this trial. Can do trial locally. I’d anything changes I will be back in Texas in a heartbeat.
                                                    • January 1, 2017 at 8:15 pm
                                                    MichelleRHG
                                                    Participant
                                                      If anything changes …..
                                                      • January 1, 2017 at 8:15 pm
                                                      MichelleRHG
                                                      Participant
                                                        If anything changes …..
                                                        • January 1, 2017 at 8:15 pm
                                                        MichelleRHG
                                                        Participant
                                                          If anything changes …..
                                                          • January 1, 2017 at 8:37 pm
                                                          MichelleRHG
                                                          Participant
                                                            If anything changes …..
                                                            • January 1, 2017 at 8:37 pm
                                                            MichelleRHG
                                                            Participant
                                                              If anything changes …..
                                                              • January 1, 2017 at 8:37 pm
                                                              MichelleRHG
                                                              Participant
                                                                If anything changes …..
                                                                • January 1, 2017 at 9:21 pm
                                                                jennunicorn
                                                                Participant

                                                                  Excellent 🙂

                                                                  • January 1, 2017 at 9:21 pm
                                                                  jennunicorn
                                                                  Participant

                                                                    Excellent 🙂

                                                                    • January 1, 2017 at 9:21 pm
                                                                    jennunicorn
                                                                    Participant

                                                                      Excellent 🙂

                                                                      • January 1, 2017 at 9:25 pm
                                                                      MichelleRHG
                                                                      Participant
                                                                        It’s so great that you support so many on this board. Thank you!
                                                                        • January 1, 2017 at 10:08 pm
                                                                        jennunicorn
                                                                        Participant

                                                                          Thanks Michelle, it's my small way to give back.. I know how scary and confusing the beginning of this journey can be

                                                                          • January 1, 2017 at 10:08 pm
                                                                          jennunicorn
                                                                          Participant

                                                                            Thanks Michelle, it's my small way to give back.. I know how scary and confusing the beginning of this journey can be

                                                                            • January 1, 2017 at 10:08 pm
                                                                            jennunicorn
                                                                            Participant

                                                                              Thanks Michelle, it's my small way to give back.. I know how scary and confusing the beginning of this journey can be

                                                                              • January 1, 2017 at 9:25 pm
                                                                              MichelleRHG
                                                                              Participant
                                                                                It’s so great that you support so many on this board. Thank you!
                                                                                • January 1, 2017 at 9:25 pm
                                                                                MichelleRHG
                                                                                Participant
                                                                                  It’s so great that you support so many on this board. Thank you!
                                                                                  • January 2, 2017 at 10:16 am
                                                                                  maperny
                                                                                  Participant

                                                                                    Hi Jenn,

                                                                                    i saw this article about some research done by Dr Wargo at MDA.

                                                                                    http://www.cancerresearchuk.org/about-us/cancer-news/press-release/2016-11-07-gut-microbes-linked-to-immunotherapy-response-in-melanoma-patients

                                                                                    is what you take gut bacteria as suggested could be helpful in the report?  I am not very up on all this.  I was thinking of getting some for my husband to take.  He is not always eager to take supplements, etc, but he has met and likes Dr Wargo so this may help me to convince him.

                                                                                    This article may be positive for you, too, Michelle

                                                                                    Thanks

                                                                                    Maria

                                                                                    • January 2, 2017 at 6:53 pm
                                                                                    jennunicorn
                                                                                    Participant

                                                                                      Hi Maria, 

                                                                                      Yes the probiotic I take is specific to the gut. Bifidobacterium, which the one I take has a couple strains, has specifically been mentioned in some studies with lab rats and melanoma. I have taken a gut specific probiotic for a few years, long before melanoma, and it has helped with many gut issues I had in the past. I haven't had any of the side effects relating to the gut and diarrhea, so my personal opinion is that taking a probiotic has been helpful in keeping my gut healthy through all the infusions I've had.

                                                                                      My boyfriend never likes to take any medication or supplements, but I got him on this probiotic as well and he's happy I did.

                                                                                      Treatment or no treatment, we could all use a little help in our gut 🙂

                                                                                       

                                                                                      • January 3, 2017 at 12:38 am
                                                                                      maperny
                                                                                      Participant

                                                                                        Thanks a lot, Jenn

                                                                                        • January 3, 2017 at 12:38 am
                                                                                        maperny
                                                                                        Participant

                                                                                          Thanks a lot, Jenn

                                                                                          • January 3, 2017 at 12:38 am
                                                                                          maperny
                                                                                          Participant

                                                                                            Thanks a lot, Jenn

                                                                                            • January 2, 2017 at 6:53 pm
                                                                                            jennunicorn
                                                                                            Participant

                                                                                              Hi Maria, 

                                                                                              Yes the probiotic I take is specific to the gut. Bifidobacterium, which the one I take has a couple strains, has specifically been mentioned in some studies with lab rats and melanoma. I have taken a gut specific probiotic for a few years, long before melanoma, and it has helped with many gut issues I had in the past. I haven't had any of the side effects relating to the gut and diarrhea, so my personal opinion is that taking a probiotic has been helpful in keeping my gut healthy through all the infusions I've had.

                                                                                              My boyfriend never likes to take any medication or supplements, but I got him on this probiotic as well and he's happy I did.

                                                                                              Treatment or no treatment, we could all use a little help in our gut 🙂

                                                                                               

                                                                                              • January 2, 2017 at 6:53 pm
                                                                                              jennunicorn
                                                                                              Participant

                                                                                                Hi Maria, 

                                                                                                Yes the probiotic I take is specific to the gut. Bifidobacterium, which the one I take has a couple strains, has specifically been mentioned in some studies with lab rats and melanoma. I have taken a gut specific probiotic for a few years, long before melanoma, and it has helped with many gut issues I had in the past. I haven't had any of the side effects relating to the gut and diarrhea, so my personal opinion is that taking a probiotic has been helpful in keeping my gut healthy through all the infusions I've had.

                                                                                                My boyfriend never likes to take any medication or supplements, but I got him on this probiotic as well and he's happy I did.

                                                                                                Treatment or no treatment, we could all use a little help in our gut 🙂

                                                                                                 

                                                                                                • January 2, 2017 at 10:16 am
                                                                                                maperny
                                                                                                Participant

                                                                                                  Hi Jenn,

                                                                                                  i saw this article about some research done by Dr Wargo at MDA.

                                                                                                  http://www.cancerresearchuk.org/about-us/cancer-news/press-release/2016-11-07-gut-microbes-linked-to-immunotherapy-response-in-melanoma-patients

                                                                                                  is what you take gut bacteria as suggested could be helpful in the report?  I am not very up on all this.  I was thinking of getting some for my husband to take.  He is not always eager to take supplements, etc, but he has met and likes Dr Wargo so this may help me to convince him.

                                                                                                  This article may be positive for you, too, Michelle

                                                                                                  Thanks

                                                                                                  Maria

                                                                                                  • January 2, 2017 at 10:16 am
                                                                                                  maperny
                                                                                                  Participant

                                                                                                    Hi Jenn,

                                                                                                    i saw this article about some research done by Dr Wargo at MDA.

                                                                                                    http://www.cancerresearchuk.org/about-us/cancer-news/press-release/2016-11-07-gut-microbes-linked-to-immunotherapy-response-in-melanoma-patients

                                                                                                    is what you take gut bacteria as suggested could be helpful in the report?  I am not very up on all this.  I was thinking of getting some for my husband to take.  He is not always eager to take supplements, etc, but he has met and likes Dr Wargo so this may help me to convince him.

                                                                                                    This article may be positive for you, too, Michelle

                                                                                                    Thanks

                                                                                                    Maria

                                                                                                    • January 1, 2017 at 7:21 pm
                                                                                                    jennunicorn
                                                                                                    Participant

                                                                                                      I take EPS Jarro-Dophilus, I buy it on Amazon:

                                                                                                      Is your oncologist a melanoma oncologist?

                                                                                                    • January 1, 2017 at 7:10 pm
                                                                                                    jennunicorn
                                                                                                    Participant

                                                                                                      I will add to the others in saying, don't go into it scared. All drugs have side effects, and all of the immunotherapy drugs have very similar ones, it's just that with Ipi there are higher reports of certain ones. I did Ipi at 10mg, got through all 4 main doses and even 2 maintanence doses. I never had a serious side effect. I had a recurrance so that's why I am on Ipi/Nivo combo now, but just finished the 4th dose of that and so far so good with minimal side effects. So, just remember, side effects are NOT a given. Every person's body reacts individually. 

                                                                                                      I have taken a good probiotic the whole time, I don't know if that has helped ward off bad stomach side effects, but that's something you could start taking if you're not already.

                                                                                                      Remember to contact your onc's office with anything that feels abnormal, they don't care how often you bug them, if something does come up and they know about it quickly then they can treat it quickly before it becomes serious.

                                                                                                      All the best,

                                                                                                      • January 1, 2017 at 7:10 pm
                                                                                                      jennunicorn
                                                                                                      Participant

                                                                                                        I will add to the others in saying, don't go into it scared. All drugs have side effects, and all of the immunotherapy drugs have very similar ones, it's just that with Ipi there are higher reports of certain ones. I did Ipi at 10mg, got through all 4 main doses and even 2 maintanence doses. I never had a serious side effect. I had a recurrance so that's why I am on Ipi/Nivo combo now, but just finished the 4th dose of that and so far so good with minimal side effects. So, just remember, side effects are NOT a given. Every person's body reacts individually. 

                                                                                                        I have taken a good probiotic the whole time, I don't know if that has helped ward off bad stomach side effects, but that's something you could start taking if you're not already.

                                                                                                        Remember to contact your onc's office with anything that feels abnormal, they don't care how often you bug them, if something does come up and they know about it quickly then they can treat it quickly before it becomes serious.

                                                                                                        All the best,

                                                                                                        • January 2, 2017 at 1:24 pm
                                                                                                        Rocco
                                                                                                        Participant

                                                                                                          Hi Michelle,

                                                                                                          As others noted the PET scan could be picking up the area of your Nov. Surgery. As for the nerves before starting the trial, it's understandable.  I was in the same state before I started the compassionate use trial for IPI way back in 2008.  It was at 10MG per dose. I did not experience any gastrointestinal issues. I did get a very light rash-could barely see it and not ichy- on my shoulders. I did however experience some eye issues which took a while to figure out that they were side effects of IPI (see my profile for details on symptoms and treatment).

                                                                                                          Through all of this I was able to work full time and carry on with life. I took 5 doses as part of the trial, stopped due to the eye issues but still had remarkable results. I am a stage IV survivor since Aug 2005 who went to NED statue thanks to IPI 10mg trial back in Feb 2009.  NED ever since with no other treatments.

                                                                                                          Everyone responds differently to meds, treatments and trials…….but there is hope!  I wish you well.

                                                                                                          Hang in there!

                                                                                                          Rocco

                                                                                                           

                                                                                                           

                                                                                                           

                                                                                                           

                                                                                                           

                                                                                                          been there

                                                                                                          • January 2, 2017 at 1:24 pm
                                                                                                          Rocco
                                                                                                          Participant

                                                                                                            Hi Michelle,

                                                                                                            As others noted the PET scan could be picking up the area of your Nov. Surgery. As for the nerves before starting the trial, it's understandable.  I was in the same state before I started the compassionate use trial for IPI way back in 2008.  It was at 10MG per dose. I did not experience any gastrointestinal issues. I did get a very light rash-could barely see it and not ichy- on my shoulders. I did however experience some eye issues which took a while to figure out that they were side effects of IPI (see my profile for details on symptoms and treatment).

                                                                                                            Through all of this I was able to work full time and carry on with life. I took 5 doses as part of the trial, stopped due to the eye issues but still had remarkable results. I am a stage IV survivor since Aug 2005 who went to NED statue thanks to IPI 10mg trial back in Feb 2009.  NED ever since with no other treatments.

                                                                                                            Everyone responds differently to meds, treatments and trials…….but there is hope!  I wish you well.

                                                                                                            Hang in there!

                                                                                                            Rocco

                                                                                                             

                                                                                                             

                                                                                                             

                                                                                                             

                                                                                                             

                                                                                                            been there

                                                                                                            • January 2, 2017 at 1:24 pm
                                                                                                            Rocco
                                                                                                            Participant

                                                                                                              Hi Michelle,

                                                                                                              As others noted the PET scan could be picking up the area of your Nov. Surgery. As for the nerves before starting the trial, it's understandable.  I was in the same state before I started the compassionate use trial for IPI way back in 2008.  It was at 10MG per dose. I did not experience any gastrointestinal issues. I did get a very light rash-could barely see it and not ichy- on my shoulders. I did however experience some eye issues which took a while to figure out that they were side effects of IPI (see my profile for details on symptoms and treatment).

                                                                                                              Through all of this I was able to work full time and carry on with life. I took 5 doses as part of the trial, stopped due to the eye issues but still had remarkable results. I am a stage IV survivor since Aug 2005 who went to NED statue thanks to IPI 10mg trial back in Feb 2009.  NED ever since with no other treatments.

                                                                                                              Everyone responds differently to meds, treatments and trials…….but there is hope!  I wish you well.

                                                                                                              Hang in there!

                                                                                                              Rocco

                                                                                                               

                                                                                                               

                                                                                                               

                                                                                                               

                                                                                                               

                                                                                                              been there

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