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Round 2 of Ipi went well

Forums General Melanoma Community Round 2 of Ipi went well

  • Post
    Vermont_Donna
    Participant

      Hi,

      Hi,

      Had Round two of Ipi yesterday. My oncologist thought he saw some pigmentation changes in my skin (looked me over with a blacklight) and he said that was encouraging. Also he did agree that all my melanomas (2 dozen or so) on my leg and the sub-q's are all bigger ie inflamed and that if we are thinking on the hopeful side this would be a good sign as tumors get inflamed before withering away…..of course the dark side would be I have more melanomas and the ones I have are bigger and growing. But we are going to choose to think positively! The infusion went well, I fell asleep again and my ffriend who drove me and my mom knitted and chatted away. once awake I had a reiki session and some lunch! Everyone is so positive and so warm but professional too!

      My wounds are not cleaning up that well with the enzymatic debrider (Santyl) but we are going to try one more week before going to surgical debridement. I am having more pain in my calf and cant lay my leg on the bed to sleep, have to lay on my side with pillows between my legs to give "space" between my calves….cant have anything touch my calf as the wounds are too painful and throbbing. My oncologist drew two lines around one of the wounds…one round the really red part and the second one further out, around where the redness ends. If the redness exceeds the lines I am to go to two of my antibiotics a day instead of one and call him.

      So thats the update. Wishing you a very Merry Christmas and Happy Holiday for those who dont celebrate Christmas.

      Vermont_Donna

      stage 3a, have done many different treatments, currently doing an clinical trial of "Ipi"

    Viewing 14 reply threads
    • Replies
        killmel
        Participant

          Donna,

           

          So happy there are some positive signs IPI is working. Have you had any side effects with IPI & how are you manging them???

          Hope  for a xmas miracle for you!

          Wendy

            Vermont_Donna
            Participant

              Hi Wendy,

              The biggest side effects I've had is extreme nausea, dry mouth and fatigue……I have some compazine for the nausea and my oncologist just gave me some Zofran. So far not too bad on the side effects, although when the nause hits I cant move….if I did I would vomit. So I just sit or lie very still.

              How are you doing?

              Vermont_Donna

              Vermont_Donna
              Participant

                Hi Wendy,

                The biggest side effects I've had is extreme nausea, dry mouth and fatigue……I have some compazine for the nausea and my oncologist just gave me some Zofran. So far not too bad on the side effects, although when the nause hits I cant move….if I did I would vomit. So I just sit or lie very still.

                How are you doing?

                Vermont_Donna

              killmel
              Participant

                Donna,

                 

                So happy there are some positive signs IPI is working. Have you had any side effects with IPI & how are you manging them???

                Hope  for a xmas miracle for you!

                Wendy

                Sharyn
                Participant

                  Hi Donna!

                  Well, now, isn't that a bit of good news! My sub-qs got inflamed and seemed to get much bigger, even after the 3rd infusion. But since the 4th infusion, they are literally melting away!! I'm hoping the same is happening to my lung and brain mets. I should get the scan results any day now. So breathe a sigh of relief, and enjoy the holidays. I wish you a very Merry Christmas, and a happy, healthy new year.

                  Hugs

                  Sharyn, Stage IV

                    Vermont_Donna
                    Participant

                      Thanks Sharyn, I am hoping things will start fading awa! I am having lots of "aches" in that darn right leg so am hoping if its mealnoma related that the aches also go away! Merry Christmas to you to dear!

                      Vermont_Donna

                      Vermont_Donna
                      Participant

                        Thanks Sharyn, I am hoping things will start fading awa! I am having lots of "aches" in that darn right leg so am hoping if its mealnoma related that the aches also go away! Merry Christmas to you to dear!

                        Vermont_Donna

                        ValinMtl
                        Participant

                          Sharyn, Sending positive thoughts for a wonderful scan report.  I do so pray that you get good results my tough little warrior. Merry Christmas. Val xx

                          ValinMtl
                          Participant

                            Sharyn, Sending positive thoughts for a wonderful scan report.  I do so pray that you get good results my tough little warrior. Merry Christmas. Val xx

                          Sharyn
                          Participant

                            Hi Donna!

                            Well, now, isn't that a bit of good news! My sub-qs got inflamed and seemed to get much bigger, even after the 3rd infusion. But since the 4th infusion, they are literally melting away!! I'm hoping the same is happening to my lung and brain mets. I should get the scan results any day now. So breathe a sigh of relief, and enjoy the holidays. I wish you a very Merry Christmas, and a happy, healthy new year.

                            Hugs

                            Sharyn, Stage IV

                            King
                            Participant

                              Donna,

                               

                              Merry Christmas!  Stick with the positive thoughts.  Try to stay comfortable.  I know it can't be easy.

                               

                              Stay Strong

                              King

                              Stage IV 7/05 Liver mes

                              King
                              Participant

                                Donna,

                                 

                                Merry Christmas!  Stick with the positive thoughts.  Try to stay comfortable.  I know it can't be easy.

                                 

                                Stay Strong

                                King

                                Stage IV 7/05 Liver mes

                                  Vermont_Donna
                                  Participant

                                    Hi King, Thanks for the support!    Merry Christmas!!

                                    Hugs, Vermont_Donna

                                    Vermont_Donna
                                    Participant

                                      Hi King, Thanks for the support!    Merry Christmas!!

                                      Hugs, Vermont_Donna

                                    Merry Christmas Donna!  It sounds like you have some real positive signs to focus on.  I am so happy for you. 

                                    May you have a very peace-filled and joyous day today.  May you feel that peace that God brings to our hearts.

                                    Many blessings,

                                    Shelly

                                      Vermont_Donna
                                      Participant

                                        Thanks Shelly,

                                        I am encouraged by Dr Ernstoff's assessment of some positive signs….but as I went through the day yesterday I couldnt help thinking "is this my last Christmas?" I am under a little dark cloud and I will shake it, but I am worried about another symptom in my leg that I didnt tell him about….one section of my thight is achy….at first I thought I pulled a muscle but I am not sure anymore. I keep thinking bone mets, but my bone scan right before Ipi was negative. Could bone mets happen just like that?? I will bring it up when I call him tomorrow to let him know I went back on augmentin twicwe a day rather than once as I feel the infection in my wounds went beyond the black circle he drew. I am not going to wait til 1/12, my next oncology appt and ipi date. I am going to tell him now as I am worried. Anyways, enough about me. Shelly how are you doing and feeling?? How was Christmas in Switzerland??

                                        hugs,

                                        Vermont_Donna

                                        Vermont_Donna
                                        Participant

                                          Thanks Shelly,

                                          I am encouraged by Dr Ernstoff's assessment of some positive signs….but as I went through the day yesterday I couldnt help thinking "is this my last Christmas?" I am under a little dark cloud and I will shake it, but I am worried about another symptom in my leg that I didnt tell him about….one section of my thight is achy….at first I thought I pulled a muscle but I am not sure anymore. I keep thinking bone mets, but my bone scan right before Ipi was negative. Could bone mets happen just like that?? I will bring it up when I call him tomorrow to let him know I went back on augmentin twicwe a day rather than once as I feel the infection in my wounds went beyond the black circle he drew. I am not going to wait til 1/12, my next oncology appt and ipi date. I am going to tell him now as I am worried. Anyways, enough about me. Shelly how are you doing and feeling?? How was Christmas in Switzerland??

                                          hugs,

                                          Vermont_Donna

                                        Merry Christmas Donna!  It sounds like you have some real positive signs to focus on.  I am so happy for you. 

                                        May you have a very peace-filled and joyous day today.  May you feel that peace that God brings to our hearts.

                                        Many blessings,

                                        Shelly

                                        ValinMtl
                                        Participant

                                          Hi Donna

                                          Round 2…isn't it amazing how the time flies!  I pray that you have a wonderful response and that your leg starts healing!  Your oncologist seems on top of everything!  A reiki session now that sounds very interesting. 
                                          I hope Christimas was full of wonderful events for you.  Val xx

                                            Vermont_Donna
                                            Participant

                                              Hi Val,

                                               Thanks! Yes DHMC offers reiki to their chemo patients while receiving chemo treatments. Its great. They also have upstairs in one of their open spaces music being played….piano or harp and you can hear it in the waiting room. Thay have a lot of nice features to this hospital. How are you doing?

                                              Hugs,

                                              Vermont_Donna

                                              Vermont_Donna
                                              Participant

                                                Hi Val,

                                                 Thanks! Yes DHMC offers reiki to their chemo patients while receiving chemo treatments. Its great. They also have upstairs in one of their open spaces music being played….piano or harp and you can hear it in the waiting room. Thay have a lot of nice features to this hospital. How are you doing?

                                                Hugs,

                                                Vermont_Donna

                                              ValinMtl
                                              Participant

                                                Hi Donna

                                                Round 2…isn't it amazing how the time flies!  I pray that you have a wonderful response and that your leg starts healing!  Your oncologist seems on top of everything!  A reiki session now that sounds very interesting. 
                                                I hope Christimas was full of wonderful events for you.  Val xx

                                                Bruce in NH
                                                Participant

                                                  Hi Donna, no doubt this is a difficult journey for you but hang in there! We are all pulling for you to successfully complete the ipi infusions and see real progress in melanoma regression. My thoughts and prayers continue for you and your family, hoping for a brighter 2011 for you.

                                                  All the best,

                                                  Bruce in NH

                                                    Vermont_Donna
                                                    Participant

                                                      Hi Bruce,

                                                      Thanks for your support. So you are waiting for more scans in February…..how are you holding up?? Feeling ok??

                                                      Vermont_Donna

                                                      Vermont_Donna
                                                      Participant

                                                        Hi Bruce,

                                                        Thanks for your support. So you are waiting for more scans in February…..how are you holding up?? Feeling ok??

                                                        Vermont_Donna

                                                      Bruce in NH
                                                      Participant

                                                        Hi Donna, no doubt this is a difficult journey for you but hang in there! We are all pulling for you to successfully complete the ipi infusions and see real progress in melanoma regression. My thoughts and prayers continue for you and your family, hoping for a brighter 2011 for you.

                                                        All the best,

                                                        Bruce in NH

                                                        phyllispj
                                                        Participant
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