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.

Ipilimumab Side Effects Question

Forums General Melanoma Community Ipilimumab Side Effects Question

  • Post
    Rocklove
    Participant

      Hi all, I started the Ipilimumab last Friday and within a few days the tumors that are noticable on my right leg have swelled up alot including the leg, the tumors are warm and tender to the touch. 

      Hi all, I started the Ipilimumab last Friday and within a few days the tumors that are noticable on my right leg have swelled up alot including the leg, the tumors are warm and tender to the touch. 

      The tumors in my liver have not bothered me any more than normal.

      Is this a side effect that I should not worry about?

      I would appreciate any knowledge to cope with this as it has started to keep me awake the last few nights with the pain.

      Thanks,

      Rocky  (Stage IV Liver Mets)

      Loading spinner
    Viewing 19 reply threads
    • Replies
        jim Breitfeller
        Participant

          Rocky, That is good news!!!!

          The Ipi activated the T-cells and induced the third signal (Danger Signal) that is needed to activate the CD8+ T-cells.

          The swelling and tender to the touch is the recruitment of T-cells and other immune cells to the tumor microenviroment.

          They then secrete IL-1, IL-6, IL-12,IL-17 and IFN-γ which are Proinflammatory Cytokines.

           

           

          Friendly inflammation “The Danger Signal”

          Most of the time you have no notion of the microbial life-and-death struggle being waged within your body. At other times, though, you are acutely aware of the exact location of the battleground, thanks to the unmistakable signs of inflammation — heat, pain, redness, and swelling. Inflammation, the buildup of fluid and cells at the point of infection/cancer, is put into motion by cytokines — proteins that are released into the blood by the innate immune system when it encounters germs. Cytokines function like police dispatchers. They signal there's a problem, which activates the immune system's highway patrol force: the circulating lymphocytes of the adaptive immune system. These lymphocytes cruise the highways of the blood vessels and lymphatic system. In response to the chemical signal from the cytokines, increased blood flow rushes these circulating cells to the trouble spot.

           “The CD8+ T-cell-mediated Immune Response to Eradicate the Tumors”

           “Three major events must occur to induce CD8+ T cell–mediated, tumor-protective immunity against syngeneic melanoma. First, the T-cell receptor must be triggered by a (or multiple) self antigen–derived peptide MHC class I complex . Therefore, this event depends entirely on appropriate antigen presentation, which is most efficiently provided by mature dendritic cells. Peripherally tolerant or “ignorant” self-reactive T-cell clones, once properly activated, may serve as tumor-specific effector T cells .Second, simultaneously with T-cell receptor triggering, a distinct second costimulatory signal must be delivered, mediated by IL-2, B7-1, or B7-2, which engage IL-2 receptors and CD28 on the surface of the T cell, respectively. A source of these cofactors for effective CD8+ T-cell stimulation can be provided by CD4+ T cells that release critical amounts of IL-2, or by mature dendritic cells that display an increased level of B7-1/B7-2 costimulatory molecules on their cell surfaces. Third, inflammatory cytokines, including IL-1, IL-6, IL-12,IL-17 and IFN-γ provide a third signal that acts directly on T cells, referred to as the “danger signal”. This signal was found to optimally activate TH1 differentiation and lead to clonal expansion of T cells.

          Danger Signal

           

           

          Best regards

           

          Jimmy b

          http://melanomamissionary.blogspot.com/

          Melanoma Missionary

          Loading spinner
          jim Breitfeller
          Participant

            Rocky, That is good news!!!!

            The Ipi activated the T-cells and induced the third signal (Danger Signal) that is needed to activate the CD8+ T-cells.

            The swelling and tender to the touch is the recruitment of T-cells and other immune cells to the tumor microenviroment.

            They then secrete IL-1, IL-6, IL-12,IL-17 and IFN-γ which are Proinflammatory Cytokines.

             

             

            Friendly inflammation “The Danger Signal”

            Most of the time you have no notion of the microbial life-and-death struggle being waged within your body. At other times, though, you are acutely aware of the exact location of the battleground, thanks to the unmistakable signs of inflammation — heat, pain, redness, and swelling. Inflammation, the buildup of fluid and cells at the point of infection/cancer, is put into motion by cytokines — proteins that are released into the blood by the innate immune system when it encounters germs. Cytokines function like police dispatchers. They signal there's a problem, which activates the immune system's highway patrol force: the circulating lymphocytes of the adaptive immune system. These lymphocytes cruise the highways of the blood vessels and lymphatic system. In response to the chemical signal from the cytokines, increased blood flow rushes these circulating cells to the trouble spot.

             “The CD8+ T-cell-mediated Immune Response to Eradicate the Tumors”

             “Three major events must occur to induce CD8+ T cell–mediated, tumor-protective immunity against syngeneic melanoma. First, the T-cell receptor must be triggered by a (or multiple) self antigen–derived peptide MHC class I complex . Therefore, this event depends entirely on appropriate antigen presentation, which is most efficiently provided by mature dendritic cells. Peripherally tolerant or “ignorant” self-reactive T-cell clones, once properly activated, may serve as tumor-specific effector T cells .Second, simultaneously with T-cell receptor triggering, a distinct second costimulatory signal must be delivered, mediated by IL-2, B7-1, or B7-2, which engage IL-2 receptors and CD28 on the surface of the T cell, respectively. A source of these cofactors for effective CD8+ T-cell stimulation can be provided by CD4+ T cells that release critical amounts of IL-2, or by mature dendritic cells that display an increased level of B7-1/B7-2 costimulatory molecules on their cell surfaces. Third, inflammatory cytokines, including IL-1, IL-6, IL-12,IL-17 and IFN-γ provide a third signal that acts directly on T cells, referred to as the “danger signal”. This signal was found to optimally activate TH1 differentiation and lead to clonal expansion of T cells.

            Danger Signal

             

             

            Best regards

             

            Jimmy b

            http://melanomamissionary.blogspot.com/

            Melanoma Missionary

            Loading spinner
            sharmon
            Participant

              Hi Rocky,

              I have to agree with Jim from what I have read.  A reaction is a good signal that the tumors are under some kind of attack.  I know it is uncomfortable and if you need something for pain please let Dr. Weber know.  Take care of yourself and get the rest you need to keep yourself in good shape. 

              Love you,

              Sharon and Brent

              Loading spinner
              sharmon
              Participant

                Hi Rocky,

                I have to agree with Jim from what I have read.  A reaction is a good signal that the tumors are under some kind of attack.  I know it is uncomfortable and if you need something for pain please let Dr. Weber know.  Take care of yourself and get the rest you need to keep yourself in good shape. 

                Love you,

                Sharon and Brent

                Loading spinner
                Sharyn
                Participant

                  Hi Rocky,

                  That Jim is one "bright feller", and he's absolutely right. I've just finished the induction phase of the ipi trial (4 infusions every 3 weeks, scan at week 12). I have a sub-q on my calf and on my back, and earlier on, they got progressively bigger and warm. Like you, I was a bit concerned, as there seemed to be no reduction as late as my 3rd infusion. But leading up to my 4th infusion, I noticed that they got soft and gradually shrunk. The calf tumor is barely palpable now, and the back tumor is about half the size it was. I also have a 3.5cm tumor in my lung, and 4 small tumors in my brain. I don't know yet how those guys are doing, as I don't have my CT results yet, but I'm hoping they are all suffering the same fate as the sub-qs. Don't worry, and sleep tight tonight knowing that this is all normal.

                  Hugs

                  Sharyn, Stage IV

                  Loading spinner
                  Sharyn
                  Participant

                    Hi Rocky,

                    That Jim is one "bright feller", and he's absolutely right. I've just finished the induction phase of the ipi trial (4 infusions every 3 weeks, scan at week 12). I have a sub-q on my calf and on my back, and earlier on, they got progressively bigger and warm. Like you, I was a bit concerned, as there seemed to be no reduction as late as my 3rd infusion. But leading up to my 4th infusion, I noticed that they got soft and gradually shrunk. The calf tumor is barely palpable now, and the back tumor is about half the size it was. I also have a 3.5cm tumor in my lung, and 4 small tumors in my brain. I don't know yet how those guys are doing, as I don't have my CT results yet, but I'm hoping they are all suffering the same fate as the sub-qs. Don't worry, and sleep tight tonight knowing that this is all normal.

                    Hugs

                    Sharyn, Stage IV

                    Loading spinner
                    ValinMtl
                    Participant

                      Hi Rocky, like Sharyn and Jim say if there is growth for a few weeks on your present tumors that you have, it is not a bad thing…look how Sharyn's has starting shrinking!!  I read that Dr. Weber is your doctor, wouldn't hurt to contact him if the tumors are hurting, he is just so approachable.  If you are a patient, you could even e-mail him…I know he responds..I'm not a patient of his but he responded to me TWICE.  Glad you are on ipi, I pray it performs miracles for you, you have gone through so much.  Isn't Jim's research fascinating!!  Val

                      Loading spinner
                      ValinMtl
                      Participant

                        Hi Rocky, like Sharyn and Jim say if there is growth for a few weeks on your present tumors that you have, it is not a bad thing…look how Sharyn's has starting shrinking!!  I read that Dr. Weber is your doctor, wouldn't hurt to contact him if the tumors are hurting, he is just so approachable.  If you are a patient, you could even e-mail him…I know he responds..I'm not a patient of his but he responded to me TWICE.  Glad you are on ipi, I pray it performs miracles for you, you have gone through so much.  Isn't Jim's research fascinating!!  Val

                        Loading spinner
                        mzeigler
                        Participant

                          Hi.  My wife is in a similar situation.  She had her first ipi infusion about 2 weeks ago.  She has 2 liver mets and a spot on her left arm bone.  She had no pain before starting ipi, but since then her left arm has been aching and painful, especially at night.  I'm hoping this is the inflammatory response I've been reading about.  The next infusion is next week.

                          Loading spinner
                          mzeigler
                          Participant

                            Hi.  My wife is in a similar situation.  She had her first ipi infusion about 2 weeks ago.  She has 2 liver mets and a spot on her left arm bone.  She had no pain before starting ipi, but since then her left arm has been aching and painful, especially at night.  I'm hoping this is the inflammatory response I've been reading about.  The next infusion is next week.

                            Loading spinner
                            Jim in Denver
                            Participant

                              Hi Rocky,

                              I will join the chorus here regarding inflammation.  I too experienced inflammation in my only surface tumor, which was about 1cm on my left thigh before starting Ipi.   It didn't get much larger measuring circumference (width and length), but it sure got larger in overall size – protruding away from the skin.  It was irritated and irritationg, but by the 12th week has started to shrink (I started Ipi in early August).  Since than it has continued to shrink progressively, and is now about half the size as when I started my trial – Ipi+Temador.  I have received the high dose Ipi – 10mg/kg, and am responding to treatment, and get more scans (8 week intervals now) next Monday. 

                              Hang in there – it sounds like you may well be responding.  Best holiday wishes to you.

                              Regards,

                              Jim

                              Loading spinner
                              Jim in Denver
                              Participant

                                Hi Rocky,

                                I will join the chorus here regarding inflammation.  I too experienced inflammation in my only surface tumor, which was about 1cm on my left thigh before starting Ipi.   It didn't get much larger measuring circumference (width and length), but it sure got larger in overall size – protruding away from the skin.  It was irritated and irritationg, but by the 12th week has started to shrink (I started Ipi in early August).  Since than it has continued to shrink progressively, and is now about half the size as when I started my trial – Ipi+Temador.  I have received the high dose Ipi – 10mg/kg, and am responding to treatment, and get more scans (8 week intervals now) next Monday. 

                                Hang in there – it sounds like you may well be responding.  Best holiday wishes to you.

                                Regards,

                                Jim

                                Loading spinner
                                Rocklove
                                Participant

                                  Thanks for the comments everyone. It has been a couple of weeks and the largest tumor on my medieval knee started draining.

                                  Not sure what that means.

                                  Other areas are still getting aggrevated. Had my 2nd Infusion last Wed Dec 29th. Seem to be doing ok, keeping the pain at bay with light meds. Still working full time, but on my days off I am totally resting up.

                                  Loading spinner
                                  Rocklove
                                  Participant

                                    Thanks for the comments everyone. It has been a couple of weeks and the largest tumor on my medieval knee started draining.

                                    Not sure what that means.

                                    Other areas are still getting aggrevated. Had my 2nd Infusion last Wed Dec 29th. Seem to be doing ok, keeping the pain at bay with light meds. Still working full time, but on my days off I am totally resting up.

                                    Loading spinner
                                      Vermont_Donna
                                      Participant

                                        Hi Rocky,

                                        I have had two Ipi treatments and after the first dose all of my leg tumors (about four dozen tiny spots, all smallet than a pencil eraser and some sub q's) have gotten bigger and some new ones I didnt know were there have also. my oncologist thinks they were probably "there" but they took getting inflamed by the ipi to "show up". I am CHOOSING to believe that this is indeed the IPI WORKING….as this is what so many other warriors have noticed too. If I chose to believe otherwise I would be a horrible wreck right now, and my children and family and friends do not need this, nor do I.

                                        I am doing a lot of work in my head to MANIFEST RECOVERY and BELIEVE it!!! It helps to have a positive attitude. I am not working now, it just got to be too much with the active painful unhealed leg wounds from surgery (7 months now) and I am throwing myself full tilt into boosting my immune system……for me that is eating healthy and I will start an exercise routine with a personal trainer at my PT's office that I have worked with before, and resting/sleeping alot.

                                        So Rocky, think GOOD thoughts and rest! and BELIEVE!

                                        Hugs,

                                        Vermont_Donna

                                        stage 3a

                                        Loading spinner
                                        Vermont_Donna
                                        Participant

                                          Hi Rocky,

                                          I have had two Ipi treatments and after the first dose all of my leg tumors (about four dozen tiny spots, all smallet than a pencil eraser and some sub q's) have gotten bigger and some new ones I didnt know were there have also. my oncologist thinks they were probably "there" but they took getting inflamed by the ipi to "show up". I am CHOOSING to believe that this is indeed the IPI WORKING….as this is what so many other warriors have noticed too. If I chose to believe otherwise I would be a horrible wreck right now, and my children and family and friends do not need this, nor do I.

                                          I am doing a lot of work in my head to MANIFEST RECOVERY and BELIEVE it!!! It helps to have a positive attitude. I am not working now, it just got to be too much with the active painful unhealed leg wounds from surgery (7 months now) and I am throwing myself full tilt into boosting my immune system……for me that is eating healthy and I will start an exercise routine with a personal trainer at my PT's office that I have worked with before, and resting/sleeping alot.

                                          So Rocky, think GOOD thoughts and rest! and BELIEVE!

                                          Hugs,

                                          Vermont_Donna

                                          stage 3a

                                          Loading spinner
                                        LynnLuc
                                        Participant

                                          Sounds like you are having a great response!! Early too!!

                                          Loading spinner
                                          LynnLuc
                                          Participant

                                            Sounds like you are having a great response!! Early too!!

                                            Loading spinner
                                            Nebr78
                                            Participant

                                              I have stage 4 melanoma. In lung, on face, chest.  Can I take Yervoy?  I have heart disease.  Had it for over 40 yrs. and it is quite bad.   Get angina easily.     "Will this Ipilimumab bother my heart

                                              Loading spinner
                                                Vermont_Donna
                                                Participant

                                                  Nebr78,

                                                  I think you will get more information for yourself if you post your question as a separate thread…..this is an older post of Rocklove's and your question here brought it back up to the top. He is not doing ipi any longer and is pursuing other treatments at MD Anderson.

                                                  That being said, I completed 4 infusions of ipi recently. I have hypertension, a history of supraventricular tachycardia and mitral valve prolapse. My PCP recently had me double my Ace inhibitor meds as my blood pressure was elevated….she was not sure the reason why…the Ipi or just my familial underlying heart disease. it would be best to ask your doctor what your risks would be. the Ipi was successful for me though, my melanoma has disappeared at this point.

                                                  Good luck!

                                                  Vermont_Donna, stage 3a

                                                  Loading spinner
                                                  Nebr78
                                                  Participant

                                                    Thanks,   I don't think I will repost it just yet. 
                                                    The last 2 replys pretty well answered my question.  I think my heart disease will stop me. It is getting worse all the time and Cardiologist says there isn't much I can do.   All I have is bypasses and  they are clogging up.  Dr. said he would have to stint the whole bypass network. 7 bypasses.

                                                    I  think I read an article that this Ipilimumab has quite a price tag.   $120,000  I don't know what Medicare will say about that.  They have stopped me from taking Termodar.   Maybe new Gov't health system will come up  with solution.?????!!

                                                    Loading spinner
                                                    Vermont_Donna
                                                    Participant

                                                      Dear Nebr78,

                                                      PLEASE do not give up! PLEASE talk to your doctors….oncologist and cardiologists!!!!

                                                      Wishing you all the best,

                                                      Vermont_Donna, stage 3a

                                                      Loading spinner
                                                      Vermont_Donna
                                                      Participant

                                                        Dear Nebr78,

                                                        PLEASE do not give up! PLEASE talk to your doctors….oncologist and cardiologists!!!!

                                                        Wishing you all the best,

                                                        Vermont_Donna, stage 3a

                                                        Loading spinner
                                                        Nebr78
                                                        Participant

                                                          Thanks,   I don't think I will repost it just yet. 
                                                          The last 2 replys pretty well answered my question.  I think my heart disease will stop me. It is getting worse all the time and Cardiologist says there isn't much I can do.   All I have is bypasses and  they are clogging up.  Dr. said he would have to stint the whole bypass network. 7 bypasses.

                                                          I  think I read an article that this Ipilimumab has quite a price tag.   $120,000  I don't know what Medicare will say about that.  They have stopped me from taking Termodar.   Maybe new Gov't health system will come up  with solution.?????!!

                                                          Loading spinner
                                                          Vermont_Donna
                                                          Participant

                                                            Nebr78,

                                                            I think you will get more information for yourself if you post your question as a separate thread…..this is an older post of Rocklove's and your question here brought it back up to the top. He is not doing ipi any longer and is pursuing other treatments at MD Anderson.

                                                            That being said, I completed 4 infusions of ipi recently. I have hypertension, a history of supraventricular tachycardia and mitral valve prolapse. My PCP recently had me double my Ace inhibitor meds as my blood pressure was elevated….she was not sure the reason why…the Ipi or just my familial underlying heart disease. it would be best to ask your doctor what your risks would be. the Ipi was successful for me though, my melanoma has disappeared at this point.

                                                            Good luck!

                                                            Vermont_Donna, stage 3a

                                                            Loading spinner
                                                          Nebr78
                                                          Participant

                                                            I have stage 4 melanoma. In lung, on face, chest.  Can I take Yervoy?  I have heart disease.  Had it for over 40 yrs. and it is quite bad.   Get angina easily.     "Will this Ipilimumab bother my heart

                                                            Loading spinner
                                                            chenrydh
                                                            Participant

                                                              I agree with everyone as I'm on the IPI.  My head started hurting, more than normal, along with the tumors on my knees and I was told that it was normal and usually means that the treatment is working.  I also have mets in my lung and stomach and have had increased stomach aches.  I did the trial of IPI and it showed some significant improvement with some shrinkage and am very thankful that it's been FDA approved (although with a high price tag).  Rocky I will add you to my prayer list and keep on fighting.  Remember together we can make a difference in the mealnoma community and as my motto has been throughout my melanoma journey – never, never, never give up.

                                                              Loading spinner
                                                              chenrydh
                                                              Participant

                                                                I agree with everyone as I'm on the IPI.  My head started hurting, more than normal, along with the tumors on my knees and I was told that it was normal and usually means that the treatment is working.  I also have mets in my lung and stomach and have had increased stomach aches.  I did the trial of IPI and it showed some significant improvement with some shrinkage and am very thankful that it's been FDA approved (although with a high price tag).  Rocky I will add you to my prayer list and keep on fighting.  Remember together we can make a difference in the mealnoma community and as my motto has been throughout my melanoma journey – never, never, never give up.

                                                                Loading spinner
                                                            Viewing 19 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.