Saying hi, on Yervoy for Stage IIIC

› Forums › General Melanoma Community › Saying hi, on Yervoy for Stage IIIC

  • Post
    • June 5, 2011 at 3:23 pm
    NYKaren
    Participant

      Hi everyone.  I'm Karen, and I'm new here.  I've been reading some posts, and while I hate the reason I'm here, I'm so glad I found this site.

      I posted my profile, but I did want to let you all know that Ipi is approved for Stage III melanoma if it has metastasized and not responded to earlier treatment.  Maybe not all hospitals/docs are using it for stage III, but luckily mine, Dr. Jedd Wolchuk (whom I love) at Sloan Kettering, is.

      Hi everyone.  I'm Karen, and I'm new here.  I've been reading some posts, and while I hate the reason I'm here, I'm so glad I found this site.

      I posted my profile, but I did want to let you all know that Ipi is approved for Stage III melanoma if it has metastasized and not responded to earlier treatment.  Maybe not all hospitals/docs are using it for stage III, but luckily mine, Dr. Jedd Wolchuk (whom I love) at Sloan Kettering, is.

      I has my first infusion 10 days ago.  They stressed not to expect side-effects till after 2nd infusion.  My melanoma is on my temple and it seems to have been arrested w/radiation, but seems to be somewhat worse now.  I called Dr. W's office and they said that with Ipi it often gets worse before it gets better. 

      In my limited experience, i have learned one VERY important lession.  We are our own advocates.  When I had my recurrence, my first doc was much too laid-back  about it for my tastes.  He said "I cant find your path report, you'll have to come back in a few days."  I said no way, and I had my derm's office fax it again right then.  He still wasn't so reactive, even though it was spreading so fast on my face that I was in a state of panic.   The next morning I called his sec'y and requested all my records.  Let me tell you, the old me would have been too scared for that, but those days are long over!   It was not easy to get into Sloan, but others have not had that problem, and once I found the right doc, I've been so much happier. 

      I'm very anxious to hear the reports from the conference that's going on now…I'm gonna quiz Dr. W. when i see him for my next infusion on the 16.  Oh yeah, I saw that the bill for $45,000 has been submitted to BC/BS, can't wait to see what they pay!

      Thanks for reading.

    Viewing 11 reply threads
    • Replies
        • June 5, 2011 at 4:17 pm
        TracyLee
        Participant

          Hi Karen,

          We are both getting our second Ipi dose on the 16th! While I didn't have radiation (yet), we are also similar as mine is scalp/neck dominant. My neck is the big problem right now.

          I had no side effects from my first dose, but didn't expect any, either. I am somewhat braced for some reaction on the second dose….

          While we're sorry you had to join us, you will find this board is awesome. Very supportive, whether you're having a good or bad day.

          I was told that the bill to the hospital was $36K, but naturally will be higher to my insurance carrier. Beebe/Tunnell had to get it all pre-authorized before my first treatment, as I 'm the first in Delaware (at least down south) to get Ipi. 

          Good luck, and welcome to the board.

          TracyLee

          Stage IV as of May 16, 2011 – scalp/neck/lungs

          • June 5, 2011 at 4:17 pm
          TracyLee
          Participant

            Hi Karen,

            We are both getting our second Ipi dose on the 16th! While I didn't have radiation (yet), we are also similar as mine is scalp/neck dominant. My neck is the big problem right now.

            I had no side effects from my first dose, but didn't expect any, either. I am somewhat braced for some reaction on the second dose….

            While we're sorry you had to join us, you will find this board is awesome. Very supportive, whether you're having a good or bad day.

            I was told that the bill to the hospital was $36K, but naturally will be higher to my insurance carrier. Beebe/Tunnell had to get it all pre-authorized before my first treatment, as I 'm the first in Delaware (at least down south) to get Ipi. 

            Good luck, and welcome to the board.

            TracyLee

            Stage IV as of May 16, 2011 – scalp/neck/lungs

            • June 5, 2011 at 4:17 pm
            TracyLee
            Participant

              Hi Karen,

              We are both getting our second Ipi dose on the 16th! While I didn't have radiation (yet), we are also similar as mine is scalp/neck dominant. My neck is the big problem right now.

              I had no side effects from my first dose, but didn't expect any, either. I am somewhat braced for some reaction on the second dose….

              While we're sorry you had to join us, you will find this board is awesome. Very supportive, whether you're having a good or bad day.

              I was told that the bill to the hospital was $36K, but naturally will be higher to my insurance carrier. Beebe/Tunnell had to get it all pre-authorized before my first treatment, as I 'm the first in Delaware (at least down south) to get Ipi. 

              Good luck, and welcome to the board.

              TracyLee

              Stage IV as of May 16, 2011 – scalp/neck/lungs

              • June 5, 2011 at 4:17 pm
              TracyLee
              Participant

                Hi Karen,

                We are both getting our second Ipi dose on the 16th! While I didn't have radiation (yet), we are also similar as mine is scalp/neck dominant. My neck is the big problem right now.

                I had no side effects from my first dose, but didn't expect any, either. I am somewhat braced for some reaction on the second dose….

                While we're sorry you had to join us, you will find this board is awesome. Very supportive, whether you're having a good or bad day.

                I was told that the bill to the hospital was $36K, but naturally will be higher to my insurance carrier. Beebe/Tunnell had to get it all pre-authorized before my first treatment, as I 'm the first in Delaware (at least down south) to get Ipi. 

                Good luck, and welcome to the board.

                TracyLee

                Stage IV as of May 16, 2011 – scalp/neck/lungs

                • June 5, 2011 at 4:17 pm
                TracyLee
                Participant

                  Hi Karen,

                  We are both getting our second Ipi dose on the 16th! While I didn't have radiation (yet), we are also similar as mine is scalp/neck dominant. My neck is the big problem right now.

                  I had no side effects from my first dose, but didn't expect any, either. I am somewhat braced for some reaction on the second dose….

                  While we're sorry you had to join us, you will find this board is awesome. Very supportive, whether you're having a good or bad day.

                  I was told that the bill to the hospital was $36K, but naturally will be higher to my insurance carrier. Beebe/Tunnell had to get it all pre-authorized before my first treatment, as I 'm the first in Delaware (at least down south) to get Ipi. 

                  Good luck, and welcome to the board.

                  TracyLee

                  Stage IV as of May 16, 2011 – scalp/neck/lungs

                  • June 5, 2011 at 4:17 pm
                  TracyLee
                  Participant

                    Hi Karen,

                    We are both getting our second Ipi dose on the 16th! While I didn't have radiation (yet), we are also similar as mine is scalp/neck dominant. My neck is the big problem right now.

                    I had no side effects from my first dose, but didn't expect any, either. I am somewhat braced for some reaction on the second dose….

                    While we're sorry you had to join us, you will find this board is awesome. Very supportive, whether you're having a good or bad day.

                    I was told that the bill to the hospital was $36K, but naturally will be higher to my insurance carrier. Beebe/Tunnell had to get it all pre-authorized before my first treatment, as I 'm the first in Delaware (at least down south) to get Ipi. 

                    Good luck, and welcome to the board.

                    TracyLee

                    Stage IV as of May 16, 2011 – scalp/neck/lungs

                    • June 5, 2011 at 4:39 pm
                    Erinmay22
                    Participant
                      Hi Karen, glad all is going well with ipi! I am also a patient at Sloan, although I have yet to start any official tx. Was trying to get in the ipi trial in Jan when they found spots in my lungs. Had a biopsy march 1 st that confirmed spread. Had 12+ spots in my lungs. Scan April 18 th showed all spots gone, so I couldn’t get in the braf trial because I did not have enough measurable growth… So my doc and I decided I would wait until my scans on Wednesday to see what is going on. If there is growth again i am guessing I’d start ipi the following week. What a roller coaster ride! Best of luck to you!
                        • June 5, 2011 at 7:15 pm
                        boot2aboot
                        Participant

                          yervoy, i understand, is given to unresectable stage 3c but, not resectable stage 3c…if i had it MY way…i would do IL2..same scenario-mel grew back in same spot it was first cut out, but don't want to leave any mel in my body if they can cut it out again…if anyone understands differently let me know…also let me know if i can get it for resectable stage 3c under compassionate care…cause this i don't understand…otherwise surgery, radiation, and bio chemo…

                          • June 5, 2011 at 7:25 pm
                          boot2aboot
                          Participant

                            yes, i agree…we ARE our advocates…noone cares about us more than us…sometimes i feel i am not only battling mel but, doctors….i have to say squeeky wheels get attention…we found mel thursday and i'm getting surgery monday-the medical onc wanted to go ahead with chemo, but i STOPPED her-it KILLS your immune system …i am the discussion of care in the guise of a medical meeting with all the oncs…i guess it's a weekly thing and i am the subject matter…stage 3 is tricky because drug trials for three usually has a placebo control arm…of course, i already complained about 'gold stars' and drug companies skewing any data in their favor…but that is a different subject

                            • June 5, 2011 at 7:25 pm
                            boot2aboot
                            Participant

                              yes, i agree…we ARE our advocates…noone cares about us more than us…sometimes i feel i am not only battling mel but, doctors….i have to say squeeky wheels get attention…we found mel thursday and i'm getting surgery monday-the medical onc wanted to go ahead with chemo, but i STOPPED her-it KILLS your immune system …i am the discussion of care in the guise of a medical meeting with all the oncs…i guess it's a weekly thing and i am the subject matter…stage 3 is tricky because drug trials for three usually has a placebo control arm…of course, i already complained about 'gold stars' and drug companies skewing any data in their favor…but that is a different subject

                              • June 5, 2011 at 7:46 pm
                              NYKaren
                              Participant

                                My mel is unresectable–who ever thought I'd be happy for that?   there's a theory that the very act of cutting the original tumors out caused the cancer to "leak" into the local lymphatic system.  I pray for the day that the Ipi causes it to just peel off my face and disappear forever.  

                                • June 5, 2011 at 8:04 pm
                                boot2aboot
                                Participant

                                  yes, it seems that can happen…but the figures are very small…and i am willing to take that chance…it seems to me surgery is easier to recuperate from then seeing if the particular treatment is working or not since mel requires strong drugs and drugs often have to be changed if non responsive…with surgery i can have a shorter recoup time and get on with radiation/immunotherapy…2 weeks verses 9 weeks…time is of the essence

                                  • June 5, 2011 at 10:18 pm
                                  nicoli
                                  Participant

                                    Well, sure. I think most here would agree that surgery is still our first line of defense. If you can cut it out, do it.

                                    Nicki, Stage 3b

                                    • June 5, 2011 at 10:18 pm
                                    nicoli
                                    Participant

                                      Well, sure. I think most here would agree that surgery is still our first line of defense. If you can cut it out, do it.

                                      Nicki, Stage 3b

                                      • June 5, 2011 at 8:04 pm
                                      boot2aboot
                                      Participant

                                        yes, it seems that can happen…but the figures are very small…and i am willing to take that chance…it seems to me surgery is easier to recuperate from then seeing if the particular treatment is working or not since mel requires strong drugs and drugs often have to be changed if non responsive…with surgery i can have a shorter recoup time and get on with radiation/immunotherapy…2 weeks verses 9 weeks…time is of the essence

                                        • June 5, 2011 at 7:46 pm
                                        NYKaren
                                        Participant

                                          My mel is unresectable–who ever thought I'd be happy for that?   there's a theory that the very act of cutting the original tumors out caused the cancer to "leak" into the local lymphatic system.  I pray for the day that the Ipi causes it to just peel off my face and disappear forever.  

                                          • June 5, 2011 at 7:15 pm
                                          boot2aboot
                                          Participant

                                            yervoy, i understand, is given to unresectable stage 3c but, not resectable stage 3c…if i had it MY way…i would do IL2..same scenario-mel grew back in same spot it was first cut out, but don't want to leave any mel in my body if they can cut it out again…if anyone understands differently let me know…also let me know if i can get it for resectable stage 3c under compassionate care…cause this i don't understand…otherwise surgery, radiation, and bio chemo…

                                          • June 5, 2011 at 4:39 pm
                                          Erinmay22
                                          Participant
                                            Hi Karen, glad all is going well with ipi! I am also a patient at Sloan, although I have yet to start any official tx. Was trying to get in the ipi trial in Jan when they found spots in my lungs. Had a biopsy march 1 st that confirmed spread. Had 12+ spots in my lungs. Scan April 18 th showed all spots gone, so I couldn’t get in the braf trial because I did not have enough measurable growth… So my doc and I decided I would wait until my scans on Wednesday to see what is going on. If there is growth again i am guessing I’d start ipi the following week. What a roller coaster ride! Best of luck to you!
                                            • June 5, 2011 at 7:48 pm
                                            RMcLegal
                                            Participant

                                              Hi Karen, best wishes to you for successful Ipi treatments!  I was diagnosed Stage IIIC back in 2003, so no Ipi, instead did biochemotherapy.  But I'm still healthy and NED.  Take care.  Rich

                                              http://www.hotelmelanoma.blogspot.com

                                                • June 5, 2011 at 8:12 pm
                                                boot2aboot
                                                Participant

                                                  Karen,

                                                  i read your profile and can understand why no surgery for you…i am a little different…no known primary and aggressive tumor in my armpit…which grew back (4 weeks) before i could start any treatment…i will get a short strong course of radiation and my tumor is being pathed as we speak so i could do target therapy if i choose under trial or compassionate use…i do hope that ipi works and pray that your body welcomes the aid to rid the mel and you get no side effects… heres to clean pet scans for both of us..

                                                  boots

                                                  • June 5, 2011 at 8:12 pm
                                                  boot2aboot
                                                  Participant

                                                    Karen,

                                                    i read your profile and can understand why no surgery for you…i am a little different…no known primary and aggressive tumor in my armpit…which grew back (4 weeks) before i could start any treatment…i will get a short strong course of radiation and my tumor is being pathed as we speak so i could do target therapy if i choose under trial or compassionate use…i do hope that ipi works and pray that your body welcomes the aid to rid the mel and you get no side effects… heres to clean pet scans for both of us..

                                                    boots

                                                  • June 5, 2011 at 7:48 pm
                                                  RMcLegal
                                                  Participant

                                                    Hi Karen, best wishes to you for successful Ipi treatments!  I was diagnosed Stage IIIC back in 2003, so no Ipi, instead did biochemotherapy.  But I'm still healthy and NED.  Take care.  Rich

                                                    http://www.hotelmelanoma.blogspot.com

                                                    • June 6, 2011 at 2:33 am
                                                    FormerCaregiver
                                                    Participant

                                                      Welcome to our forum. It is great that you are eligible for Yervoy (ipi) treatment, and I
                                                      hope that you respond really well to it.

                                                      I would like to strongly agree with your comments regarding patients being their own
                                                      advocates. Doctors are often very busy and do not know everything that people might assume
                                                      that they do. They may rely on their support staff too much, and may not be aware of all
                                                      that is going on with each patient. If only more patients and caregivers realised this,
                                                      and spoke up immediately if something was of concern.

                                                      Thanks for filling in your profile. I wonder if you know the depth of your primary lesion?

                                                      Best wishes

                                                      Frank from Australia

                                                      • June 6, 2011 at 2:33 am
                                                      FormerCaregiver
                                                      Participant

                                                        Welcome to our forum. It is great that you are eligible for Yervoy (ipi) treatment, and I
                                                        hope that you respond really well to it.

                                                        I would like to strongly agree with your comments regarding patients being their own
                                                        advocates. Doctors are often very busy and do not know everything that people might assume
                                                        that they do. They may rely on their support staff too much, and may not be aware of all
                                                        that is going on with each patient. If only more patients and caregivers realised this,
                                                        and spoke up immediately if something was of concern.

                                                        Thanks for filling in your profile. I wonder if you know the depth of your primary lesion?

                                                        Best wishes

                                                        Frank from Australia

                                                    Viewing 11 reply threads
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