The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

DO you think this is from Ipi?

Forums General Melanoma Community DO you think this is from Ipi?

  • Post
    BGL530830
    Participant

    Husband had first dose on june 18, so it has been about 10 and a half weeks since then.  A few days ago he started having uncontrolled bms.  Prior to this he was always constipated, so we were kind of shocked.  His liver enzymes are also elevated.  He does have some disease in the liver.  He had a chest ct a couple weeks back due to fluid in the lungs and that also showed all the disease in his chest was stable, which was great news.  it just seems like in the past week his health has deteriorated quickly…  there are more bumps on his head and i even not

    Husband had first dose on june 18, so it has been about 10 and a half weeks since then.  A few days ago he started having uncontrolled bms.  Prior to this he was always constipated, so we were kind of shocked.  His liver enzymes are also elevated.  He does have some disease in the liver.  He had a chest ct a couple weeks back due to fluid in the lungs and that also showed all the disease in his chest was stable, which was great news.  it just seems like in the past week his health has deteriorated quickly…  there are more bumps on his head and i even noticed a lump in his shoulder and side.  is it even possible that this is all from the ipi working or should i prepare myself for sad news?  his full body ct is tomorrow or tues and we get results the next day. 

    Loading spinner
Viewing 13 reply threads
  • Replies
      Tim–MRF
      Guest

      Problems with diarrhea are a typical side effect of ipi and should be reported right away.  The normal treatment for diarrhea is not the right approach for diarrhea caused by ipi, so it is important you follow the advice of your oncologist in treating this.  It is not considered serious, but if left untreated can cause dehydration and other bowel issues.

       

      Tim–MRF

      Loading spinner
      Tim–MRF
      Guest

      Problems with diarrhea are a typical side effect of ipi and should be reported right away.  The normal treatment for diarrhea is not the right approach for diarrhea caused by ipi, so it is important you follow the advice of your oncologist in treating this.  It is not considered serious, but if left untreated can cause dehydration and other bowel issues.

       

      Tim–MRF

      Loading spinner
      Linda/Kentucky
      Participant

      One of the major side effects from this drug is diarrhea.  The reason for the concern is that it could perforate the bowel which is a bad thing to have.  You need to contact your trial nurse and Dr. about this immediately usually it can be cleared up with steroids.  Do l understand you to say he had his first dose June 18th that would mean he has had 2 or 3 Infusions since then?  Not sure how many doses he has had but yes Ipi does some strange things to the body and it varies from person to person.  Again make sure your trial nurse knows about this.

       

      Linda/Kentucky   husband stage IV

      Loading spinner
      Linda/Kentucky
      Participant

      One of the major side effects from this drug is diarrhea.  The reason for the concern is that it could perforate the bowel which is a bad thing to have.  You need to contact your trial nurse and Dr. about this immediately usually it can be cleared up with steroids.  Do l understand you to say he had his first dose June 18th that would mean he has had 2 or 3 Infusions since then?  Not sure how many doses he has had but yes Ipi does some strange things to the body and it varies from person to person.  Again make sure your trial nurse knows about this.

       

      Linda/Kentucky   husband stage IV

      Loading spinner
      Linda/Kentucky
      Participant

      One of the major side effects from this drug is diarrhea.  The reason for the concern is that it could perforate the bowel which is a bad thing to have.  You need to contact your trial nurse and Dr. about this immediately usually it can be cleared up with steroids.  Do l understand you to say he had his first dose June 18th that would mean he has had 2 or 3 Infusions since then?  Not sure how many doses he has had but yes Ipi does some strange things to the body and it varies from person to person.  Again make sure your trial nurse knows about this.

       

      Linda/Kentucky   husband stage IV

      Loading spinner
      Linda/Kentucky
      Participant

      One of the major side effects from this drug is diarrhea.  The reason for the concern is that it could perforate the bowel which is a bad thing to have.  You need to contact your trial nurse and Dr. about this immediately usually it can be cleared up with steroids.  Do l understand you to say he had his first dose June 18th that would mean he has had 2 or 3 Infusions since then?  Not sure how many doses he has had but yes Ipi does some strange things to the body and it varies from person to person.  Again make sure your trial nurse knows about this.

       

      Linda/Kentucky   husband stage IV

      Loading spinner
      Linda/Kentucky
      Participant

      One of the major side effects from this drug is diarrhea.  The reason for the concern is that it could perforate the bowel which is a bad thing to have.  You need to contact your trial nurse and Dr. about this immediately usually it can be cleared up with steroids.  Do l understand you to say he had his first dose June 18th that would mean he has had 2 or 3 Infusions since then?  Not sure how many doses he has had but yes Ipi does some strange things to the body and it varies from person to person.  Again make sure your trial nurse knows about this.

       

      Linda/Kentucky   husband stage IV

      Loading spinner
      Linda/Kentucky
      Participant

      One of the major side effects from this drug is diarrhea.  The reason for the concern is that it could perforate the bowel which is a bad thing to have.  You need to contact your trial nurse and Dr. about this immediately usually it can be cleared up with steroids.  Do l understand you to say he had his first dose June 18th that would mean he has had 2 or 3 Infusions since then?  Not sure how many doses he has had but yes Ipi does some strange things to the body and it varies from person to person.  Again make sure your trial nurse knows about this.

       

      Linda/Kentucky   husband stage IV

      Loading spinner
      Linda/Kentucky
      Participant

      Sorry this keeps posting twice.

      Linda/Kentucky

      Loading spinner
      Linda/Kentucky
      Participant

      Sorry this keeps posting twice.

      Linda/Kentucky

      Loading spinner
      Charlie S
      Participant

      Colo/rectal problems are not uncommon wihile taking Ipilimumab and it is a good idea, as with any melanoma treatment to remain vigilant and ask questions and get answers.

      Here is a link to a BB about IPI side effects http://www.patientsville.com/medication/ipilimumab_side_effects.htm that you may find helpfull.

       

      Charlie S

      Loading spinner
      Charlie S
      Participant

      Colo/rectal problems are not uncommon wihile taking Ipilimumab and it is a good idea, as with any melanoma treatment to remain vigilant and ask questions and get answers.

      Here is a link to a BB about IPI side effects http://www.patientsville.com/medication/ipilimumab_side_effects.htm that you may find helpfull.

       

      Charlie S

      Loading spinner
      BGL530830
      Participant

      Not good news here….  The Drs said his liver is functioning at a 1/4 of its capacity…and it will not come back.  I can't believe this.  I know Drs can be wrong and I hope for a miracle.  the disease in his chest progressed – not much, but a little bit.  I keep hoping "this is just ipi and his disease is going to regress spontaneously."  he is in ICU right now and we are preparing for the worst and hoping for the best.  Is this hopeless?

      Loading spinner
        Linda/Kentucky
        Participant

        Never give up hope.  I pray that something will start to turn around for you soon.  What did they say about his diarrhea?  Why is he in ICU.  As you know Ipi  "tends to make things worse before getting better" could this be the case?  What are the Dr.'s telling you?  ALWAYS ask questions even if they don't want to answer them and continue to do so you are your husbands health advocate so press on with the questions….

        Again I hope thngs start to turn around for you soon.

        Linda/Kentucky

        Loading spinner
        Linda/Kentucky
        Participant

        Never give up hope.  I pray that something will start to turn around for you soon.  What did they say about his diarrhea?  Why is he in ICU.  As you know Ipi  "tends to make things worse before getting better" could this be the case?  What are the Dr.'s telling you?  ALWAYS ask questions even if they don't want to answer them and continue to do so you are your husbands health advocate so press on with the questions….

        Again I hope thngs start to turn around for you soon.

        Linda/Kentucky

        Loading spinner
      BGL530830
      Participant

      Not good news here….  The Drs said his liver is functioning at a 1/4 of its capacity…and it will not come back.  I can't believe this.  I know Drs can be wrong and I hope for a miracle.  the disease in his chest progressed – not much, but a little bit.  I keep hoping "this is just ipi and his disease is going to regress spontaneously."  he is in ICU right now and we are preparing for the worst and hoping for the best.  Is this hopeless?

      Loading spinner
Viewing 13 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.