MRF-Logo2019-Horizontal-RGB
Adverse Effects of Immunotherapy
REGISTER
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.

Adverse Effects of Immunotherapy

› Forums › General Melanoma Community › Adverse Effects of Immunotherapy

  • Post
    • August 23, 2016 at 11:13 pm
    VeraB
    Participant

      Hello all, 
      Looking for some advice and support here. I have been undergoing immunotherapy treatment which has been decreased from a two drug therapy to a single drug therapy (Keytruda) but the side effects have been unbearable lately. I have been hospitalized with colitis about 2 months ago and then again with pancreatitis a few weeks ago. I am now home but check ups with the oncologist show a lipase level that is not decreasing. I have been taking corticosteroids at home as well as had an IV infusion today. In addition to my recent weight loss of 15 pounds, I have been extremely fatigued and find it difficult getting out of bed every morning. However, latest CT scans do show progress and benefits of the therapy. 
      I am on a bland diet for the pancreatitis although I have had no appetite anyways.

      Anybody else struggling with the adverse effects? Its becoming increasingly difficult fighting this battle and I'm looking for any advice or support I can get. 

      Thank you! 
       

    Viewing 2 reply threads
    • Replies
        • August 24, 2016 at 12:25 am
        Casitas1
        Participant

          Hello Anon, I was in the same boat as you a year ago. Then I was on the combo Ippi/Nivo. I did not have Colitis although had severe diarrhea. I had to stop the combo after two infusions due to nausea, vomiting, weight loss and pancreatitis. Lost about 25lbs. Had a round of Steroids 6 weeks and Remicade. After that tried two doses of Nivo alone and ended up with High liver counts over 1000. and another round of steroids. Steroid therapy for me was pretty brutal with all the side effects. The steroids should at least give more of an appetite though. Now i am on Keytruda and having wonderful results like you I have fatigue  along with joint inflammation. I am a self employed Gardener so the my workload is pretty heavy. I made myself get out of bed and work even just for a few hours and rest the rest of the day. You will get tons of support and info here on this forum and are not alone.

          Hang in there you will beat this!

          Best, Paul

          • August 24, 2016 at 12:25 am
          Casitas1
          Participant

            Hello Anon, I was in the same boat as you a year ago. Then I was on the combo Ippi/Nivo. I did not have Colitis although had severe diarrhea. I had to stop the combo after two infusions due to nausea, vomiting, weight loss and pancreatitis. Lost about 25lbs. Had a round of Steroids 6 weeks and Remicade. After that tried two doses of Nivo alone and ended up with High liver counts over 1000. and another round of steroids. Steroid therapy for me was pretty brutal with all the side effects. The steroids should at least give more of an appetite though. Now i am on Keytruda and having wonderful results like you I have fatigue  along with joint inflammation. I am a self employed Gardener so the my workload is pretty heavy. I made myself get out of bed and work even just for a few hours and rest the rest of the day. You will get tons of support and info here on this forum and are not alone.

            Hang in there you will beat this!

            Best, Paul

            • August 24, 2016 at 12:25 am
            Casitas1
            Participant

              Hello Anon, I was in the same boat as you a year ago. Then I was on the combo Ippi/Nivo. I did not have Colitis although had severe diarrhea. I had to stop the combo after two infusions due to nausea, vomiting, weight loss and pancreatitis. Lost about 25lbs. Had a round of Steroids 6 weeks and Remicade. After that tried two doses of Nivo alone and ended up with High liver counts over 1000. and another round of steroids. Steroid therapy for me was pretty brutal with all the side effects. The steroids should at least give more of an appetite though. Now i am on Keytruda and having wonderful results like you I have fatigue  along with joint inflammation. I am a self employed Gardener so the my workload is pretty heavy. I made myself get out of bed and work even just for a few hours and rest the rest of the day. You will get tons of support and info here on this forum and are not alone.

              Hang in there you will beat this!

              Best, Paul

                • August 24, 2016 at 1:09 am
                VeraB
                Participant

                  Thanks Paul,

                  It does make me feel better knowing I am not alone going thru this. I really just want to get off the steroids already and resume a normal diet, get back on my feet, and stop feeling so out of it. I hope youre doing well, than you for replying! 

                   

                  • August 24, 2016 at 1:09 am
                  VeraB
                  Participant

                    Thanks Paul,

                    It does make me feel better knowing I am not alone going thru this. I really just want to get off the steroids already and resume a normal diet, get back on my feet, and stop feeling so out of it. I hope youre doing well, than you for replying! 

                     

                    • August 24, 2016 at 1:09 am
                    VeraB
                    Participant

                      Thanks Paul,

                      It does make me feel better knowing I am not alone going thru this. I really just want to get off the steroids already and resume a normal diet, get back on my feet, and stop feeling so out of it. I hope youre doing well, than you for replying! 

                       

                      • August 24, 2016 at 1:24 am
                      Casitas1
                      Participant

                        You and your Dr. are probably aware that a slow taper off of the prednisone is key to not getting more severe withdrawal symptoms. Pancreatic enzymes and Probiotics really helped with stomach issues.

                        Best, Paul

                        • August 24, 2016 at 1:24 am
                        Casitas1
                        Participant

                          You and your Dr. are probably aware that a slow taper off of the prednisone is key to not getting more severe withdrawal symptoms. Pancreatic enzymes and Probiotics really helped with stomach issues.

                          Best, Paul

                          • August 24, 2016 at 1:24 am
                          Casitas1
                          Participant

                            You and your Dr. are probably aware that a slow taper off of the prednisone is key to not getting more severe withdrawal symptoms. Pancreatic enzymes and Probiotics really helped with stomach issues.

                            Best, Paul

                      Viewing 2 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.

                      Popular Topics