starting IPI, any advice?
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starting IPI, any advice?

› Forums › General Melanoma Community › starting IPI, any advice?

  • Post
    • October 13, 2014 at 1:02 pm
    jualonso
    Participant

    Hi to everybody

    Finally i have progression with Braf/Mek and we have decided to go through IPI.

    Do i need washout period?

    Some changes in diet?

    Well, all advices are welcome….

    Jualonso

Viewing 23 reply threads
  • Replies
      • October 13, 2014 at 3:03 pm
      RJoeyB
      Participant

      The common side effects are well-documented:  loose stools, diarrhea, rash, fatigue, sensitivity to sun, and others.   Be sure to report anything out of the ordinary to your doctor at the very first sign.  Some people try to tough it out, perhaps thinking that if they push through, they'll be more likely to get through all four doses.  Instead, (1) that can be dangerous and lead to more long-term problems, and (2) if they catch and treat things early, they're more likely to be able to manage the side effects so that all four doses can be given. Certainly not a guarantee, but the best approach is to be very open with your doctors about anything that comes up.

      Hope that helps, Joe

      • October 13, 2014 at 3:03 pm
      RJoeyB
      Participant

      The common side effects are well-documented:  loose stools, diarrhea, rash, fatigue, sensitivity to sun, and others.   Be sure to report anything out of the ordinary to your doctor at the very first sign.  Some people try to tough it out, perhaps thinking that if they push through, they'll be more likely to get through all four doses.  Instead, (1) that can be dangerous and lead to more long-term problems, and (2) if they catch and treat things early, they're more likely to be able to manage the side effects so that all four doses can be given. Certainly not a guarantee, but the best approach is to be very open with your doctors about anything that comes up.

      Hope that helps, Joe

      • October 13, 2014 at 3:03 pm
      RJoeyB
      Participant

      The common side effects are well-documented:  loose stools, diarrhea, rash, fatigue, sensitivity to sun, and others.   Be sure to report anything out of the ordinary to your doctor at the very first sign.  Some people try to tough it out, perhaps thinking that if they push through, they'll be more likely to get through all four doses.  Instead, (1) that can be dangerous and lead to more long-term problems, and (2) if they catch and treat things early, they're more likely to be able to manage the side effects so that all four doses can be given. Certainly not a guarantee, but the best approach is to be very open with your doctors about anything that comes up.

      Hope that helps, Joe

      • October 13, 2014 at 3:13 pm
      arthurjedi007
      Participant

      When I came off zelboraf to start IPI they had me do a 9 day washout period. When I came off Braf/Mek to start PD1 they had me do a 7 day washout period.

      Artie

      • October 13, 2014 at 3:13 pm
      arthurjedi007
      Participant

      When I came off zelboraf to start IPI they had me do a 9 day washout period. When I came off Braf/Mek to start PD1 they had me do a 7 day washout period.

      Artie

      • October 13, 2014 at 3:13 pm
      arthurjedi007
      Participant

      When I came off zelboraf to start IPI they had me do a 9 day washout period. When I came off Braf/Mek to start PD1 they had me do a 7 day washout period.

      Artie

      • October 13, 2014 at 3:32 pm
      BrianP
      Participant

      Jualonso,

      Along with the side effects Joe mentioned one that is sometimes overlooked is hypohysitis (swelling of the pituitary gland).  A few of us on here have had that one.  Mine manifested itself with a slight sinus like headache that eventually spread to my whole head and gradually got more intense.  Another member on here had his start out pretty intense from the beginning.  Fairly easy to manage with prednisone but you want to catch it early to avoid damage to the pituitary gland.  Sorry to hear about your progression.  I hope you have little side effects and great results with Ipi.  Seems like there's been several good results with Ipi on here lately so hopefully you can keep that trend going.

      Brian

      • October 13, 2014 at 3:32 pm
      BrianP
      Participant

      Jualonso,

      Along with the side effects Joe mentioned one that is sometimes overlooked is hypohysitis (swelling of the pituitary gland).  A few of us on here have had that one.  Mine manifested itself with a slight sinus like headache that eventually spread to my whole head and gradually got more intense.  Another member on here had his start out pretty intense from the beginning.  Fairly easy to manage with prednisone but you want to catch it early to avoid damage to the pituitary gland.  Sorry to hear about your progression.  I hope you have little side effects and great results with Ipi.  Seems like there's been several good results with Ipi on here lately so hopefully you can keep that trend going.

      Brian

      • October 13, 2014 at 3:32 pm
      BrianP
      Participant

      Jualonso,

      Along with the side effects Joe mentioned one that is sometimes overlooked is hypohysitis (swelling of the pituitary gland).  A few of us on here have had that one.  Mine manifested itself with a slight sinus like headache that eventually spread to my whole head and gradually got more intense.  Another member on here had his start out pretty intense from the beginning.  Fairly easy to manage with prednisone but you want to catch it early to avoid damage to the pituitary gland.  Sorry to hear about your progression.  I hope you have little side effects and great results with Ipi.  Seems like there's been several good results with Ipi on here lately so hopefully you can keep that trend going.

      Brian

      • October 13, 2014 at 8:41 pm
      Ginger8888
      Participant

      The only side effect i had was a little fatigue every now and then, it's working for me, i finished it Aug 13th and it got rid of spots in my lungs and the one in my neck shrunk to half it's size..Good luck

        • October 14, 2014 at 4:38 am
        Marianne quinn
        Participant

        I have written quite a few posts on how my husband managed his side effects from 10 mg ipi given in clinical trial. Perhaps they can help you if you want to check them out. 

        • October 14, 2014 at 4:38 am
        Marianne quinn
        Participant

        I have written quite a few posts on how my husband managed his side effects from 10 mg ipi given in clinical trial. Perhaps they can help you if you want to check them out. 

        • October 14, 2014 at 4:38 am
        Marianne quinn
        Participant

        I have written quite a few posts on how my husband managed his side effects from 10 mg ipi given in clinical trial. Perhaps they can help you if you want to check them out. 

      • October 13, 2014 at 8:41 pm
      Ginger8888
      Participant

      The only side effect i had was a little fatigue every now and then, it's working for me, i finished it Aug 13th and it got rid of spots in my lungs and the one in my neck shrunk to half it's size..Good luck

      • October 13, 2014 at 8:41 pm
      Ginger8888
      Participant

      The only side effect i had was a little fatigue every now and then, it's working for me, i finished it Aug 13th and it got rid of spots in my lungs and the one in my neck shrunk to half it's size..Good luck

      • October 14, 2014 at 11:58 am
      Cooper
      Participant

      I saw washout should be short here on melanomaforum.org:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35436

       

      • October 14, 2014 at 11:58 am
      Cooper
      Participant

      I saw washout should be short here on melanomaforum.org:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35436

       

      • October 14, 2014 at 11:58 am
      Cooper
      Participant

      I saw washout should be short here on melanomaforum.org:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35436

       

      • October 15, 2014 at 11:06 am
      jualonso
      Participant

      Thanks to all of you for your support and kind replies.

      Im taking some cood suplements like tumeric pills,  vitamins d and others as well.

      Have you  een taking anything during your IPI period?

      Thanks in advance

      Jualonso

      • October 15, 2014 at 11:06 am
      jualonso
      Participant

      Thanks to all of you for your support and kind replies.

      Im taking some cood suplements like tumeric pills,  vitamins d and others as well.

      Have you  een taking anything during your IPI period?

      Thanks in advance

      Jualonso

      • October 15, 2014 at 11:06 am
      jualonso
      Participant

      Thanks to all of you for your support and kind replies.

      Im taking some cood suplements like tumeric pills,  vitamins d and others as well.

      Have you  een taking anything during your IPI period?

      Thanks in advance

      Jualonso

        • October 15, 2014 at 2:30 pm
        Ginger8888
        Participant

        I took and still take a mulit vit and vit D3 also drank V-8 juice, plenty of water and a nutritional drink a couple times a day..My Dr advised me to stay away from most of the natural herbs and supplements as they have not been tested with Yervoy..I did not get a flu vac because there is not enough known about it and Yervoy..I didn't want to chance compromising my immune system..

        • October 15, 2014 at 2:30 pm
        Ginger8888
        Participant

        I took and still take a mulit vit and vit D3 also drank V-8 juice, plenty of water and a nutritional drink a couple times a day..My Dr advised me to stay away from most of the natural herbs and supplements as they have not been tested with Yervoy..I did not get a flu vac because there is not enough known about it and Yervoy..I didn't want to chance compromising my immune system..

        • October 15, 2014 at 2:30 pm
        Ginger8888
        Participant

        I took and still take a mulit vit and vit D3 also drank V-8 juice, plenty of water and a nutritional drink a couple times a day..My Dr advised me to stay away from most of the natural herbs and supplements as they have not been tested with Yervoy..I did not get a flu vac because there is not enough known about it and Yervoy..I didn't want to chance compromising my immune system..

        • October 15, 2014 at 3:46 pm
        arthurjedi007
        Participant

        My doc said I should not take any vitamins and definitely no supplements while on ipi. I think he was wrong. When I started PD1 I had already started back on and still take my one a day vitamin, vitamin d3, vitamin k2 and a little spiru-tein. The vitamin k2 I had read from someone on here that is supposed to be good for bones but most people don't know about it. But it has to be the k2 not the other types of k.

        Artie

        • October 15, 2014 at 3:46 pm
        arthurjedi007
        Participant

        My doc said I should not take any vitamins and definitely no supplements while on ipi. I think he was wrong. When I started PD1 I had already started back on and still take my one a day vitamin, vitamin d3, vitamin k2 and a little spiru-tein. The vitamin k2 I had read from someone on here that is supposed to be good for bones but most people don't know about it. But it has to be the k2 not the other types of k.

        Artie

        • October 15, 2014 at 3:46 pm
        arthurjedi007
        Participant

        My doc said I should not take any vitamins and definitely no supplements while on ipi. I think he was wrong. When I started PD1 I had already started back on and still take my one a day vitamin, vitamin d3, vitamin k2 and a little spiru-tein. The vitamin k2 I had read from someone on here that is supposed to be good for bones but most people don't know about it. But it has to be the k2 not the other types of k.

        Artie

      • October 15, 2014 at 8:01 pm
      Gene_S
      Participant

      Took Multi Vitamin, Vitamin D3 all the way throught my Yervoy treatment.

      • October 15, 2014 at 8:01 pm
      Gene_S
      Participant

      Took Multi Vitamin, Vitamin D3 all the way throught my Yervoy treatment.

      • October 15, 2014 at 8:01 pm
      Gene_S
      Participant

      Took Multi Vitamin, Vitamin D3 all the way throught my Yervoy treatment.

      • October 15, 2014 at 8:29 pm
      jualonso
      Participant
      Did anyone take curcumin supplement?
      • October 15, 2014 at 8:29 pm
      jualonso
      Participant
      Did anyone take curcumin supplement?
      • October 15, 2014 at 8:29 pm
      jualonso
      Participant
      Did anyone take curcumin supplement?
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