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Ready to enjoy the next two months

› Forums › General Melanoma Community › Ready to enjoy the next two months

  • Post
    • September 2, 2016 at 8:52 pm
    Mamapegela
    Participant

      I just wanted to post a little update on my situation.  Brief background is I am stage 3c (diagnosed stage 1 in Nov. 2015) status post left neck dissection in May, now with new and growing lung nodules making me ineligible for the clinical trial I was hoping to enroll in.  The lung nodules are small (3mm, 4mm and 8mm) and inaccesible for needle biopsy at this time, and did not "light up" on PET.

      I wanted a VATS to remove one for diagnostic purposes so that I could get treatment if it is mel.  I was really distraught when my doctor. said "no".  However, after a 45 minute appointment with him this tuesday during which he went over everything very thoroughly with me, I am at peace with his recommendation to wait and re-scan in 2 months time.

      I am looking forward to a beautiful Michigan fall and for the first time since my surgery I feel a little free from stress and worry.  I understand that I am most likely going to be dealing with mel again, but for now I am putting it on the back burner and enjoying this beautiful life.  It isn't often that we who have melanoma get to relax but I now look at this as a gift.

      Thanks everyone and I am here with you in your journeys  as well

      Best,  Peggy

    Viewing 8 reply threads
    • Replies
        • September 2, 2016 at 9:44 pm
        geriakt
        Participant

          Peggy,

          I am stage IIIB since April 2015.  I started my clinical trial of either IPI or NIVO in Sept. 2015. Last week I finished my 34 infusions in 50 weeks.  I am and have been NED since I started the trial but I have a 50/50 chance of reoccurrence so I went on the trial.  You can find the trial info in my profile. 

          What I suggest is you start treatment ASAP while you are healthy because it will make it easier to tolerate the side effects. Mine were minimal and I was getting either high dose IPI or high dose NIVO.  Based on my side effect that typically took place 24-48 hours after NIVO infusions, so i believe I was getting NIVO.   

          At your current stage of 3C you are eligible for IPI high dose or low dose (FDA approves high dose but your DR can lower the dose). If your DR says you are now stage IV with the possible lung mets I would ask for the IPI/NIVO combo treatment and start right away.  Your insurance should cover both depending on what your current status is.

          Start ASAP while healthy is my recommendation and do not delay.

          Sincerely,

          Tom

          • September 2, 2016 at 9:44 pm
          geriakt
          Participant

            Peggy,

            I am stage IIIB since April 2015.  I started my clinical trial of either IPI or NIVO in Sept. 2015. Last week I finished my 34 infusions in 50 weeks.  I am and have been NED since I started the trial but I have a 50/50 chance of reoccurrence so I went on the trial.  You can find the trial info in my profile. 

            What I suggest is you start treatment ASAP while you are healthy because it will make it easier to tolerate the side effects. Mine were minimal and I was getting either high dose IPI or high dose NIVO.  Based on my side effect that typically took place 24-48 hours after NIVO infusions, so i believe I was getting NIVO.   

            At your current stage of 3C you are eligible for IPI high dose or low dose (FDA approves high dose but your DR can lower the dose). If your DR says you are now stage IV with the possible lung mets I would ask for the IPI/NIVO combo treatment and start right away.  Your insurance should cover both depending on what your current status is.

            Start ASAP while healthy is my recommendation and do not delay.

            Sincerely,

            Tom

              • September 2, 2016 at 10:07 pm
              Mamapegela
              Participant

                Hi Tom-

                My onc Dr. Lao at University of Michigan does not offer ipi to his stage 3 patients due to his experience and belief that the side effects are too severe.

                 I was going to do a clinical trial of ipi or interferon vs pembro at my local cancer center in Kalamazoo so that I could do the ipi if I got into that arm of the trial because my choice would have been only interferon vs pembro at U of M .  I did go to MD Anderson for a second opinion and saw Dr. Glitza – she said that she gives select stage 3 patients ipi but at the 3mg/kg dose and that 70 percent of her collegues at MD Anderson do not give ipi for stage 3.  Despite this I was willing to do it if I had the chance.

                Now with this new news both Dr. Lao and Dr. Glitza  are reccomending waiting and re-scanning in 2 months and to do no treatment at this time.  At some point I have to trust what the experts are telling me.  I know they are far more knowledgable and understand the intracacies of this diagnosis better than I.  I had a long list of questions for them both as I wanted to make sure that nothing was going un-examined in my case and they answered them to the best of their ability although the big question- is this stage 4? -goes unanswered.  

                They will not start stage 4 therapy without a biopsy.  If the nodules grow hopefully they can achieve a biopsy in 2 months.  

                I appreciate your point of veiw and I know that this aggressive disease requires aggresive treatment but for now I have to let the future handle itself.  

                Best to you-

                Peggy

                • September 2, 2016 at 10:21 pm
                geriakt
                Participant

                  Just because your doctor does not offer IPI does not mean he/she is right. I think you need to look at the realistic evidence in your body with the (possible) lung Mets.  If it is Mel then you are stage IV and need to get on the IPI anyhow. Interferon is not the way to go. You can read for hours why on this site alone. I have 3 melanoma Oncs. All recommended the IPI/NIVO clinical trial for me at stage IIIB. All three said do not go the interferon route. 

                  All I am stating is starting treatment while you are healthy is much easier to tolerate. If you are upgraded to stage IV and wait 3 months to determine this, that is 3 months of time you have allowed your cancer to get hold in your body.  I am not trying to scare you, but you can read all about the stage IV's on here that can not tolerate the meds.  It is completely your choice, but melanoma is not a slow growning cancer like colon or prostate. 

                  Odd that MDA Oncs are not recommending it because I am on thier trial?

                  • September 2, 2016 at 10:21 pm
                  geriakt
                  Participant

                    Just because your doctor does not offer IPI does not mean he/she is right. I think you need to look at the realistic evidence in your body with the (possible) lung Mets.  If it is Mel then you are stage IV and need to get on the IPI anyhow. Interferon is not the way to go. You can read for hours why on this site alone. I have 3 melanoma Oncs. All recommended the IPI/NIVO clinical trial for me at stage IIIB. All three said do not go the interferon route. 

                    All I am stating is starting treatment while you are healthy is much easier to tolerate. If you are upgraded to stage IV and wait 3 months to determine this, that is 3 months of time you have allowed your cancer to get hold in your body.  I am not trying to scare you, but you can read all about the stage IV's on here that can not tolerate the meds.  It is completely your choice, but melanoma is not a slow growning cancer like colon or prostate. 

                    Odd that MDA Oncs are not recommending it because I am on thier trial?

                    • September 2, 2016 at 10:21 pm
                    geriakt
                    Participant

                      Just because your doctor does not offer IPI does not mean he/she is right. I think you need to look at the realistic evidence in your body with the (possible) lung Mets.  If it is Mel then you are stage IV and need to get on the IPI anyhow. Interferon is not the way to go. You can read for hours why on this site alone. I have 3 melanoma Oncs. All recommended the IPI/NIVO clinical trial for me at stage IIIB. All three said do not go the interferon route. 

                      All I am stating is starting treatment while you are healthy is much easier to tolerate. If you are upgraded to stage IV and wait 3 months to determine this, that is 3 months of time you have allowed your cancer to get hold in your body.  I am not trying to scare you, but you can read all about the stage IV's on here that can not tolerate the meds.  It is completely your choice, but melanoma is not a slow growning cancer like colon or prostate. 

                      Odd that MDA Oncs are not recommending it because I am on thier trial?

                      • September 2, 2016 at 11:54 pm
                      Mamapegela
                      Participant

                        So my situation is that I can't prescribe the medication for myself nor can I do a biopsy on myself.  I am under the care of doctors among whom is one from MD Anderson who concur that I need to wait.  I did strongly argue for VATS procedure or just starting treatment based on the likelihood that this is stage 4 melanoma but they convinced me that the proper treatment is to wait and rescan.

                        Part of the problem is that we cannot any longer say that I am stage 3 (which is why I can't do the planned clinical trial), nor will they treat me as stage 4.   So I am in limbo and I have to live with it for now.  

                        I understand where you are coming from but for now I am just giong to keep on keeping on.

                         

                         

                        • September 2, 2016 at 11:54 pm
                        Mamapegela
                        Participant

                          So my situation is that I can't prescribe the medication for myself nor can I do a biopsy on myself.  I am under the care of doctors among whom is one from MD Anderson who concur that I need to wait.  I did strongly argue for VATS procedure or just starting treatment based on the likelihood that this is stage 4 melanoma but they convinced me that the proper treatment is to wait and rescan.

                          Part of the problem is that we cannot any longer say that I am stage 3 (which is why I can't do the planned clinical trial), nor will they treat me as stage 4.   So I am in limbo and I have to live with it for now.  

                          I understand where you are coming from but for now I am just giong to keep on keeping on.

                           

                           

                          • September 2, 2016 at 11:54 pm
                          Mamapegela
                          Participant

                            So my situation is that I can't prescribe the medication for myself nor can I do a biopsy on myself.  I am under the care of doctors among whom is one from MD Anderson who concur that I need to wait.  I did strongly argue for VATS procedure or just starting treatment based on the likelihood that this is stage 4 melanoma but they convinced me that the proper treatment is to wait and rescan.

                            Part of the problem is that we cannot any longer say that I am stage 3 (which is why I can't do the planned clinical trial), nor will they treat me as stage 4.   So I am in limbo and I have to live with it for now.  

                            I understand where you are coming from but for now I am just giong to keep on keeping on.

                             

                             

                            • September 2, 2016 at 10:07 pm
                            Mamapegela
                            Participant

                              Hi Tom-

                              My onc Dr. Lao at University of Michigan does not offer ipi to his stage 3 patients due to his experience and belief that the side effects are too severe.

                               I was going to do a clinical trial of ipi or interferon vs pembro at my local cancer center in Kalamazoo so that I could do the ipi if I got into that arm of the trial because my choice would have been only interferon vs pembro at U of M .  I did go to MD Anderson for a second opinion and saw Dr. Glitza – she said that she gives select stage 3 patients ipi but at the 3mg/kg dose and that 70 percent of her collegues at MD Anderson do not give ipi for stage 3.  Despite this I was willing to do it if I had the chance.

                              Now with this new news both Dr. Lao and Dr. Glitza  are reccomending waiting and re-scanning in 2 months and to do no treatment at this time.  At some point I have to trust what the experts are telling me.  I know they are far more knowledgable and understand the intracacies of this diagnosis better than I.  I had a long list of questions for them both as I wanted to make sure that nothing was going un-examined in my case and they answered them to the best of their ability although the big question- is this stage 4? -goes unanswered.  

                              They will not start stage 4 therapy without a biopsy.  If the nodules grow hopefully they can achieve a biopsy in 2 months.  

                              I appreciate your point of veiw and I know that this aggressive disease requires aggresive treatment but for now I have to let the future handle itself.  

                              Best to you-

                              Peggy

                              • September 2, 2016 at 10:07 pm
                              Mamapegela
                              Participant

                                Hi Tom-

                                My onc Dr. Lao at University of Michigan does not offer ipi to his stage 3 patients due to his experience and belief that the side effects are too severe.

                                 I was going to do a clinical trial of ipi or interferon vs pembro at my local cancer center in Kalamazoo so that I could do the ipi if I got into that arm of the trial because my choice would have been only interferon vs pembro at U of M .  I did go to MD Anderson for a second opinion and saw Dr. Glitza – she said that she gives select stage 3 patients ipi but at the 3mg/kg dose and that 70 percent of her collegues at MD Anderson do not give ipi for stage 3.  Despite this I was willing to do it if I had the chance.

                                Now with this new news both Dr. Lao and Dr. Glitza  are reccomending waiting and re-scanning in 2 months and to do no treatment at this time.  At some point I have to trust what the experts are telling me.  I know they are far more knowledgable and understand the intracacies of this diagnosis better than I.  I had a long list of questions for them both as I wanted to make sure that nothing was going un-examined in my case and they answered them to the best of their ability although the big question- is this stage 4? -goes unanswered.  

                                They will not start stage 4 therapy without a biopsy.  If the nodules grow hopefully they can achieve a biopsy in 2 months.  

                                I appreciate your point of veiw and I know that this aggressive disease requires aggresive treatment but for now I have to let the future handle itself.  

                                Best to you-

                                Peggy

                              • September 2, 2016 at 9:44 pm
                              geriakt
                              Participant

                                Peggy,

                                I am stage IIIB since April 2015.  I started my clinical trial of either IPI or NIVO in Sept. 2015. Last week I finished my 34 infusions in 50 weeks.  I am and have been NED since I started the trial but I have a 50/50 chance of reoccurrence so I went on the trial.  You can find the trial info in my profile. 

                                What I suggest is you start treatment ASAP while you are healthy because it will make it easier to tolerate the side effects. Mine were minimal and I was getting either high dose IPI or high dose NIVO.  Based on my side effect that typically took place 24-48 hours after NIVO infusions, so i believe I was getting NIVO.   

                                At your current stage of 3C you are eligible for IPI high dose or low dose (FDA approves high dose but your DR can lower the dose). If your DR says you are now stage IV with the possible lung mets I would ask for the IPI/NIVO combo treatment and start right away.  Your insurance should cover both depending on what your current status is.

                                Start ASAP while healthy is my recommendation and do not delay.

                                Sincerely,

                                Tom

                                • September 2, 2016 at 11:28 pm
                                Polymath
                                Participant

                                  Hi Peggy,

                                  I'm not getting into the debate, but want to say I love your attitude.  A great quote from one of my all-time favorite movies is "get busy living, or get busy dying".  We all have a choice, no matter what stage our disease.  Choosing to be happy is a very healthy decision.  Best to you in the battle.

                                  Gary

                                  • September 2, 2016 at 11:28 pm
                                  Polymath
                                  Participant

                                    Hi Peggy,

                                    I'm not getting into the debate, but want to say I love your attitude.  A great quote from one of my all-time favorite movies is "get busy living, or get busy dying".  We all have a choice, no matter what stage our disease.  Choosing to be happy is a very healthy decision.  Best to you in the battle.

                                    Gary

                                      • September 2, 2016 at 11:57 pm
                                      Mamapegela
                                      Participant

                                        Thank you Gary!  That is one thing that I have been clear about since the start- one thing I have total control over is my attitude.  Not saying that some days I don't get overwhelmed but for the most part I'm trying to do as you say- get busy living.  Thanks for all of your encouragement to others.

                                        Best- Peggy

                                        • September 2, 2016 at 11:57 pm
                                        Mamapegela
                                        Participant

                                          Thank you Gary!  That is one thing that I have been clear about since the start- one thing I have total control over is my attitude.  Not saying that some days I don't get overwhelmed but for the most part I'm trying to do as you say- get busy living.  Thanks for all of your encouragement to others.

                                          Best- Peggy

                                          • September 2, 2016 at 11:57 pm
                                          Mamapegela
                                          Participant

                                            Thank you Gary!  That is one thing that I have been clear about since the start- one thing I have total control over is my attitude.  Not saying that some days I don't get overwhelmed but for the most part I'm trying to do as you say- get busy living.  Thanks for all of your encouragement to others.

                                            Best- Peggy

                                            • September 3, 2016 at 10:44 am
                                            Fen
                                            Participant

                                              I agree with Gary's taste in movies and his advice.  You are a knowledgeable patient and comfortable with your doctors' treatment plan.  Waiting can be awful but you even have a plan for that.  Enjoy the fall and get outside as much as you can.   Keep us posted.

                                              Fen

                                              • September 3, 2016 at 10:44 am
                                              Fen
                                              Participant

                                                I agree with Gary's taste in movies and his advice.  You are a knowledgeable patient and comfortable with your doctors' treatment plan.  Waiting can be awful but you even have a plan for that.  Enjoy the fall and get outside as much as you can.   Keep us posted.

                                                Fen

                                                • September 4, 2016 at 1:39 am
                                                Mamapegela
                                                Participant

                                                  Thank you Fen.  Sharing here helps so much. 

                                                   

                                                  • September 4, 2016 at 1:39 am
                                                  Mamapegela
                                                  Participant

                                                    Thank you Fen.  Sharing here helps so much. 

                                                     

                                                    • September 4, 2016 at 1:39 am
                                                    Mamapegela
                                                    Participant

                                                      Thank you Fen.  Sharing here helps so much. 

                                                       

                                                      • September 3, 2016 at 10:44 am
                                                      Fen
                                                      Participant

                                                        I agree with Gary's taste in movies and his advice.  You are a knowledgeable patient and comfortable with your doctors' treatment plan.  Waiting can be awful but you even have a plan for that.  Enjoy the fall and get outside as much as you can.   Keep us posted.

                                                        Fen

                                                      • September 2, 2016 at 11:28 pm
                                                      Polymath
                                                      Participant

                                                        Hi Peggy,

                                                        I'm not getting into the debate, but want to say I love your attitude.  A great quote from one of my all-time favorite movies is "get busy living, or get busy dying".  We all have a choice, no matter what stage our disease.  Choosing to be happy is a very healthy decision.  Best to you in the battle.

                                                        Gary

                                                        • September 3, 2016 at 11:05 pm
                                                        Bubbles
                                                        Participant

                                                          Hi Peggy,

                                                          Melanoma-never-land….is a very difficult place to be!  Been there, done that.  I agree with Gary.  You're fighting for your care as best you can.  Getting the best advice you can.  And with that done….what can one really do?  I wouldn't put my head in the sand…and I don't think you are.  So…as a children's book my kids loved for me to read says…"Breathe deep, seek peace."  Enjoy your fall indeed!!!  Rescan and go from there.  Wishing you my very best.  celeste

                                                          • September 3, 2016 at 11:05 pm
                                                          Bubbles
                                                          Participant

                                                            Hi Peggy,

                                                            Melanoma-never-land….is a very difficult place to be!  Been there, done that.  I agree with Gary.  You're fighting for your care as best you can.  Getting the best advice you can.  And with that done….what can one really do?  I wouldn't put my head in the sand…and I don't think you are.  So…as a children's book my kids loved for me to read says…"Breathe deep, seek peace."  Enjoy your fall indeed!!!  Rescan and go from there.  Wishing you my very best.  celeste

                                                              • September 4, 2016 at 1:40 am
                                                              Mamapegela
                                                              Participant

                                                                I love that!!  Thank you for all your diligent research and expertise that you share here.  I have learned much already from you. 

                                                                • September 4, 2016 at 1:40 am
                                                                Mamapegela
                                                                Participant

                                                                  I love that!!  Thank you for all your diligent research and expertise that you share here.  I have learned much already from you. 

                                                                  • September 4, 2016 at 1:40 am
                                                                  Mamapegela
                                                                  Participant

                                                                    I love that!!  Thank you for all your diligent research and expertise that you share here.  I have learned much already from you. 

                                                                  • September 3, 2016 at 11:05 pm
                                                                  Bubbles
                                                                  Participant

                                                                    Hi Peggy,

                                                                    Melanoma-never-land….is a very difficult place to be!  Been there, done that.  I agree with Gary.  You're fighting for your care as best you can.  Getting the best advice you can.  And with that done….what can one really do?  I wouldn't put my head in the sand…and I don't think you are.  So…as a children's book my kids loved for me to read says…"Breathe deep, seek peace."  Enjoy your fall indeed!!!  Rescan and go from there.  Wishing you my very best.  celeste

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