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 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 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 7:21 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 8:15 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 9:25 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 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 9:21 pm
        jennunicorn
        Participant

        Excellent 🙂

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

        Excellent 🙂

        • 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 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 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 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 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 7:10 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

Viewing 14 reply threads
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