MRF-Logo2019-Horizontal-RGB
IPI responders Question
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.

IPI responders Question

› Forums › Cutaneous Melanoma Community › IPI responders Question

  • Post
    • August 19, 2011 at 4:34 pm
    emilypen
    Participant

      Hi All,

      My hubby is currently doing IPI in a clinical trial in Toronto. He had his 3rd infusion yesterday.

      My question to anyone who responded to IPI in the past. When did you lumps/bumps start dissapearing or rather when did new ones stop popping up?

      It seems that every day there is a new subcutaneous bump popping up. Some of his older bumps are inflamed and painful to the touch and some have bruises over them.

      Hi All,

      My hubby is currently doing IPI in a clinical trial in Toronto. He had his 3rd infusion yesterday.

      My question to anyone who responded to IPI in the past. When did you lumps/bumps start dissapearing or rather when did new ones stop popping up?

      It seems that every day there is a new subcutaneous bump popping up. Some of his older bumps are inflamed and painful to the touch and some have bruises over them.

      We heard that his lympocyte level was raised on his last blood work and the docs said that is a good sign, but it's hard to remain positive when he feels something new every day.

      Last night he was up til 4am just worrying.

       

      And for those that did not respond to IPI, what next? We've done MEK/P13k, BRAF , Dacarbazine and now IPI.

      Any input is greatly appreaciated.

       

      thanks,

      em

    Viewing 3 reply threads
    • Replies
        • August 19, 2011 at 5:59 pm
        Lisa13
        Participant

          Hi Emily,

          Your husband and I share the same Dr (Dr Hogg) and we are both currently in his ipi trial at Princess Margaret.

          I just started ipi and don't have sub q's, so I don't have any answers or experience to your question. I do know that several people on this board have mentioned new tumours popping up on their skin and turned out to be a sign of an inflammatory response to ipi. If your husbands lymphocytes have doubled, then that too is also good news.  I know it's hard not to worry, but you just have to hope for the best and know that your answers will be coming soon after the 4th infusion.  I have lung mets, so I worry what's going on in my lungs and inside my body since I can't see anything. Perhaps this is a good thing 🙂

          Like your husband, I've completed dacarbazine and now on ip. I"m not BRAF positive, so my options are limited if this doesn't work.  Personally, my next step would be IL-2 or clinical trials. Not too sure if you can get into Anti-PD1 trials after ipi, but that too is on my list as well as TIL treatment. We just have to hope that we don't have to worry about other options for awhile.

          P.S. Dr. Hogg said he had another trial becoming available later this Fall, but I don't know what it is. He mentioned that I could be a part of it as ipi wouldn't exclude me.  Another option for your husband too…..

          Best of luck!

          Lisa

            • August 20, 2011 at 11:31 am
            Vermont_Donna
            Participant

              Hi,

              I had many sub qs when I did Ipi under a clinical trial…December 2010 til February 2011. I had new sub q's popping up almost daily until I think the third dose, or after the third dose. You can look at my profile. I know my oncologist said as faar as trial criteria new sub q's were "acceptable" up to 12 weeks (the 4th dose) meaning I wouldnt be kicked out of the trial becuase of new sub q's. I had a rather dramatic response after the 4 doses and all the sub q's reabsorbed into my body and now 6 onths later scans etc show I am still NED!

              my best to you,

              Vermont_Donna

              stage 3a, NED

              • August 22, 2011 at 1:52 pm
              Terra
              Participant

                Hi Emily,

                 

                Derek finished his 4th injection on Aug 10 at PMH.  We have a scan this Friday.  He did not have any subqs – tumors were all inside.  It sounds as though many or most responders are late responders – there is still lats of hope.  If you can let me know when you will be at PMH next aybe we can have a coffee. How are you feeling and how is the baby?

                 

                Terra

                [email protected]

                • August 22, 2011 at 10:58 pm
                Lisa13
                Participant

                  Hi Terra,

                  I just started ipi last week and had a question for you.

                  Are there blood tests, tumour markers along the way that may determine if there is a spread going on inside or if the ipi may be working?  I find it a bit nervewracking waiting 3 months for a CT scan to see how my lung mets are doing. If ipi doesn't work and mets keep growing or spreading, do you have to wait 3 months to know  or could they stop it to put you on something else?  I'm happy to hear that most responders are late responders and agree that there is always hope.

                  I'm sending you and your husband best wishes and prayers for a successful CT scan on Friday. I hope ipi is kicking your husbands mets to the curb.

                  Lisa

                  • August 22, 2011 at 10:58 pm
                  Lisa13
                  Participant

                    Hi Terra,

                    I just started ipi last week and had a question for you.

                    Are there blood tests, tumour markers along the way that may determine if there is a spread going on inside or if the ipi may be working?  I find it a bit nervewracking waiting 3 months for a CT scan to see how my lung mets are doing. If ipi doesn't work and mets keep growing or spreading, do you have to wait 3 months to know  or could they stop it to put you on something else?  I'm happy to hear that most responders are late responders and agree that there is always hope.

                    I'm sending you and your husband best wishes and prayers for a successful CT scan on Friday. I hope ipi is kicking your husbands mets to the curb.

                    Lisa

                    • August 22, 2011 at 1:52 pm
                    Terra
                    Participant

                      Hi Emily,

                       

                      Derek finished his 4th injection on Aug 10 at PMH.  We have a scan this Friday.  He did not have any subqs – tumors were all inside.  It sounds as though many or most responders are late responders – there is still lats of hope.  If you can let me know when you will be at PMH next aybe we can have a coffee. How are you feeling and how is the baby?

                       

                      Terra

                      [email protected]

                      • August 20, 2011 at 11:31 am
                      Vermont_Donna
                      Participant

                        Hi,

                        I had many sub qs when I did Ipi under a clinical trial…December 2010 til February 2011. I had new sub q's popping up almost daily until I think the third dose, or after the third dose. You can look at my profile. I know my oncologist said as faar as trial criteria new sub q's were "acceptable" up to 12 weeks (the 4th dose) meaning I wouldnt be kicked out of the trial becuase of new sub q's. I had a rather dramatic response after the 4 doses and all the sub q's reabsorbed into my body and now 6 onths later scans etc show I am still NED!

                        my best to you,

                        Vermont_Donna

                        stage 3a, NED

                      • August 19, 2011 at 5:59 pm
                      Lisa13
                      Participant

                        Hi Emily,

                        Your husband and I share the same Dr (Dr Hogg) and we are both currently in his ipi trial at Princess Margaret.

                        I just started ipi and don't have sub q's, so I don't have any answers or experience to your question. I do know that several people on this board have mentioned new tumours popping up on their skin and turned out to be a sign of an inflammatory response to ipi. If your husbands lymphocytes have doubled, then that too is also good news.  I know it's hard not to worry, but you just have to hope for the best and know that your answers will be coming soon after the 4th infusion.  I have lung mets, so I worry what's going on in my lungs and inside my body since I can't see anything. Perhaps this is a good thing 🙂

                        Like your husband, I've completed dacarbazine and now on ip. I"m not BRAF positive, so my options are limited if this doesn't work.  Personally, my next step would be IL-2 or clinical trials. Not too sure if you can get into Anti-PD1 trials after ipi, but that too is on my list as well as TIL treatment. We just have to hope that we don't have to worry about other options for awhile.

                        P.S. Dr. Hogg said he had another trial becoming available later this Fall, but I don't know what it is. He mentioned that I could be a part of it as ipi wouldn't exclude me.  Another option for your husband too…..

                        Best of luck!

                        Lisa

                        • August 25, 2011 at 8:41 pm
                        jim Breitfeller
                        Participant

                          Emily,

                          I believe your husband is responding to Ipi. The inflamation and pain is a sure tell sign that the danger signal has been activated. You will see some shrinkage at about 112 days or 12-16 weeks.

                          Warm Regards

                           

                          Jimmy B

                          • August 25, 2011 at 8:41 pm
                          jim Breitfeller
                          Participant

                            Emily,

                            I believe your husband is responding to Ipi. The inflamation and pain is a sure tell sign that the danger signal has been activated. You will see some shrinkage at about 112 days or 12-16 weeks.

                            Warm Regards

                             

                            Jimmy B

                        Viewing 3 reply threads

                        Tagged: 

                        • 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