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Yervoy – I have to stop after two infusions

Forums General Melanoma Community Yervoy – I have to stop after two infusions

  • Post
    AlanM
    Participant

      I had my second infusion of Yervoy on September 7th. About a week after the infusion I started having symptoms of colitis and my doctor started me on prednisone. I continued increasing the dose over the course of a couple of weeks until I was up 100mg per day with worsening symptoms (no perferation but believe me they were bad) to the point where I was checked into the hospital for a three day stay! While there they gave me a single dose of Imfliximab (Remicade) which finally had me turn the corner and relieve the symptoms.

      I had my second infusion of Yervoy on September 7th. About a week after the infusion I started having symptoms of colitis and my doctor started me on prednisone. I continued increasing the dose over the course of a couple of weeks until I was up 100mg per day with worsening symptoms (no perferation but believe me they were bad) to the point where I was checked into the hospital for a three day stay! While there they gave me a single dose of Imfliximab (Remicade) which finally had me turn the corner and relieve the symptoms.  Over the last two weeks I have been gradually reducing the steroid dose and yesterday was my final dose!  Given my reaction to the last infusion my doctor does not recommend another infusion. He told me that I shouldn't be thinking in terms of the number of doses, rather I should feel assured that my immune system was revved up by the two that I received. 

      Have others here had good/lasting results with an abbreviated cycle of Yervoy? 

      Alan

       

    Viewing 23 reply threads
    • Replies
        FormerCaregiver
        Participant

          Alan, I am sorry to read that you have had symptoms of colitis with Yervoy. As your doctor has mentioned, Yervoy has certainly caused your immune system to rev up. Prednisone tends to have immunosuppressant effects, so it is good that you have been able to discontinue taking this steroid.

          I think that if the immune system can keep the melanoma cells from forming tumours, then melanoma can be kept under control. However, this is rarely the case and melanoma usually seems to be able to outsmart the immune system's efforts to contain it. Therefore, I wonder if you have considered what your next treatment(s) will be?

          These are some treatments that show promise and are worth looking at: GM-CSF (Leukine) and surgery when needed, BRAF and similar inhibitors, IL-2, and anti PD-1 (MDX-1106). Of course, there is also ongoing research regarding vaccines and this may also be good to keep in mind.

          Hope this helps.

          Frank from Australia

            AlanM
            Participant

              In terms of additional treatment options, I am in a holding pattern until mid November. First I need to heal from this recent bout with colitis. Stomach is still a bit sore, sleep disrupted from steriods, etc.  I have the post Yervoy CT scan planned for November 4th and a six-month follow-up brain MRI scheduled for November 16th. When I see those results I can plan forward. Honestly, assuming  the brain met continues to shrink (it was radiated with Gamma Knife last May) and I am still clean in the rest of my body, I will most likely opt-out of additional treatments and  continue with scans/MRI on a quarterly basis. I am doing a number of other things with diet(no dairy, cold water fish and veggies/soy only, low glycemic), supplements, and Ayurveda that I will continue.   My doctor feels that if I can make the one-year mark (May 2012)  without any  progression that my overall survival odds take a good uptick.

              Alan

              AlanM
              Participant

                In terms of additional treatment options, I am in a holding pattern until mid November. First I need to heal from this recent bout with colitis. Stomach is still a bit sore, sleep disrupted from steriods, etc.  I have the post Yervoy CT scan planned for November 4th and a six-month follow-up brain MRI scheduled for November 16th. When I see those results I can plan forward. Honestly, assuming  the brain met continues to shrink (it was radiated with Gamma Knife last May) and I am still clean in the rest of my body, I will most likely opt-out of additional treatments and  continue with scans/MRI on a quarterly basis. I am doing a number of other things with diet(no dairy, cold water fish and veggies/soy only, low glycemic), supplements, and Ayurveda that I will continue.   My doctor feels that if I can make the one-year mark (May 2012)  without any  progression that my overall survival odds take a good uptick.

                Alan

                AlanM
                Participant

                  In terms of additional treatment options, I am in a holding pattern until mid November. First I need to heal from this recent bout with colitis. Stomach is still a bit sore, sleep disrupted from steriods, etc.  I have the post Yervoy CT scan planned for November 4th and a six-month follow-up brain MRI scheduled for November 16th. When I see those results I can plan forward. Honestly, assuming  the brain met continues to shrink (it was radiated with Gamma Knife last May) and I am still clean in the rest of my body, I will most likely opt-out of additional treatments and  continue with scans/MRI on a quarterly basis. I am doing a number of other things with diet(no dairy, cold water fish and veggies/soy only, low glycemic), supplements, and Ayurveda that I will continue.   My doctor feels that if I can make the one-year mark (May 2012)  without any  progression that my overall survival odds take a good uptick.

                  Alan

                FormerCaregiver
                Participant

                  Alan, I am sorry to read that you have had symptoms of colitis with Yervoy. As your doctor has mentioned, Yervoy has certainly caused your immune system to rev up. Prednisone tends to have immunosuppressant effects, so it is good that you have been able to discontinue taking this steroid.

                  I think that if the immune system can keep the melanoma cells from forming tumours, then melanoma can be kept under control. However, this is rarely the case and melanoma usually seems to be able to outsmart the immune system's efforts to contain it. Therefore, I wonder if you have considered what your next treatment(s) will be?

                  These are some treatments that show promise and are worth looking at: GM-CSF (Leukine) and surgery when needed, BRAF and similar inhibitors, IL-2, and anti PD-1 (MDX-1106). Of course, there is also ongoing research regarding vaccines and this may also be good to keep in mind.

                  Hope this helps.

                  Frank from Australia

                  FormerCaregiver
                  Participant

                    Alan, I am sorry to read that you have had symptoms of colitis with Yervoy. As your doctor has mentioned, Yervoy has certainly caused your immune system to rev up. Prednisone tends to have immunosuppressant effects, so it is good that you have been able to discontinue taking this steroid.

                    I think that if the immune system can keep the melanoma cells from forming tumours, then melanoma can be kept under control. However, this is rarely the case and melanoma usually seems to be able to outsmart the immune system's efforts to contain it. Therefore, I wonder if you have considered what your next treatment(s) will be?

                    These are some treatments that show promise and are worth looking at: GM-CSF (Leukine) and surgery when needed, BRAF and similar inhibitors, IL-2, and anti PD-1 (MDX-1106). Of course, there is also ongoing research regarding vaccines and this may also be good to keep in mind.

                    Hope this helps.

                    Frank from Australia

                    PlantLady
                    Participant

                      My husband, Ron, also had the Yervoy suspended after 2 treatments.  He lost his voice, lost a lot of weight and muscle, lost the ability to walk normally due to neuropathy/drop foot and of course diarrhea.   He finished his last dose of steroid, dexamethasone, yesterday.

                      We went in for MRI and PET scans 2 days ago, and will find out next week if anything positive came of the Yervoy.

                      If you look through these boards you will find others who had an abbreviated treatment and did benefit.  Keep your chin up.

                      We have till Wed to wait for the results and then find out what the next course of action will be.

                      Good luck.

                      CJ, wife of Ron  Stage IV, mets lung, bone, adrenal.  No known primary.

                      PlantLady
                      Participant

                        My husband, Ron, also had the Yervoy suspended after 2 treatments.  He lost his voice, lost a lot of weight and muscle, lost the ability to walk normally due to neuropathy/drop foot and of course diarrhea.   He finished his last dose of steroid, dexamethasone, yesterday.

                        We went in for MRI and PET scans 2 days ago, and will find out next week if anything positive came of the Yervoy.

                        If you look through these boards you will find others who had an abbreviated treatment and did benefit.  Keep your chin up.

                        We have till Wed to wait for the results and then find out what the next course of action will be.

                        Good luck.

                        CJ, wife of Ron  Stage IV, mets lung, bone, adrenal.  No known primary.

                        PlantLady
                        Participant

                          My husband, Ron, also had the Yervoy suspended after 2 treatments.  He lost his voice, lost a lot of weight and muscle, lost the ability to walk normally due to neuropathy/drop foot and of course diarrhea.   He finished his last dose of steroid, dexamethasone, yesterday.

                          We went in for MRI and PET scans 2 days ago, and will find out next week if anything positive came of the Yervoy.

                          If you look through these boards you will find others who had an abbreviated treatment and did benefit.  Keep your chin up.

                          We have till Wed to wait for the results and then find out what the next course of action will be.

                          Good luck.

                          CJ, wife of Ron  Stage IV, mets lung, bone, adrenal.  No known primary.

                          Charlie S
                          Participant

                            Though not popular, the melanoma community MUST recognize that Yervoy alone is not the singular answer to melanoma.

                            It is a step.

                             I am sorry that this step has not had the joy you wanted Alan,,,,,,,,,,,,,,,,,,,,but it is unrealistic to think that it would be  for all people.

                            Like it or not, Yervoy is still an experimental drug and the effectiveness of it in the general population is subject to question and it simply is too soon to tell.

                            Pick a treatment for melanoma…………..any treatment, any year, any day, including Yervoy…………….and at the  VERY best (and I am being generous here)……………..is at best a 20% response rate.

                            And you can not expect instant joy from any of them………..it may take time, and yervoy may take time.

                            Historically, Melanoma is not a disease that lends itself to instant response………..rather it is an incremental disease that takes an incremental approach over a period of time; to either relinquish or demise.

                            In short, it is too soon to expect an answer to something so historically uncertain based upon one new drug.

                            However, I hope it finds you Joy

                            Charlie S

                              Lisa13
                              Participant

                                Charlie,

                                I believe, and have read that the current new melanoma treatments will have more response rates than mentioned.  Yervoy response numbers for example came from 676 patients who were quite sick and had high LDH numbers.  In an article I just read, it mentioned the numbers changing once Yervoy was used on people with earlier advanced disease and whose cancer had time for Yervoy to work.  It is a step, but I'm thankful melanoma treatment is heading in a direction where they're starting to figure it out.

                                I know melanoma outsmarts the immune system, but these treatments are definately giving us all hope.I am 1 out of 2716 patients who are in a compassionate use Yervoy trial which I presume in 5 years will show better response rates than 20%.  We can't cling on to historical response rates – we have to move forward and change these numbers.      

                                Alan, even though you havn't been able to finish this drug, it's great that your immune system has responded. If you can get your Absolute Lymphocyte count, you'll know just how much your immune system has reved up.  There are other treatments available – IL-2 seems to respond nicely after ipi. Anti PD-1 is good too, but apparently can't be done after ipi.

                                Charlie is right – all treatments are historically uncertain – but we'll all do what we can to make it to the next breakout drug.

                                I wish you much success in your journey.

                                Lisa – Stage 4  

                                Lisa13
                                Participant

                                  Charlie,

                                  I believe, and have read that the current new melanoma treatments will have more response rates than mentioned.  Yervoy response numbers for example came from 676 patients who were quite sick and had high LDH numbers.  In an article I just read, it mentioned the numbers changing once Yervoy was used on people with earlier advanced disease and whose cancer had time for Yervoy to work.  It is a step, but I'm thankful melanoma treatment is heading in a direction where they're starting to figure it out.

                                  I know melanoma outsmarts the immune system, but these treatments are definately giving us all hope.I am 1 out of 2716 patients who are in a compassionate use Yervoy trial which I presume in 5 years will show better response rates than 20%.  We can't cling on to historical response rates – we have to move forward and change these numbers.      

                                  Alan, even though you havn't been able to finish this drug, it's great that your immune system has responded. If you can get your Absolute Lymphocyte count, you'll know just how much your immune system has reved up.  There are other treatments available – IL-2 seems to respond nicely after ipi. Anti PD-1 is good too, but apparently can't be done after ipi.

                                  Charlie is right – all treatments are historically uncertain – but we'll all do what we can to make it to the next breakout drug.

                                  I wish you much success in your journey.

                                  Lisa – Stage 4  

                                  Lisa13
                                  Participant

                                    Charlie,

                                    I believe, and have read that the current new melanoma treatments will have more response rates than mentioned.  Yervoy response numbers for example came from 676 patients who were quite sick and had high LDH numbers.  In an article I just read, it mentioned the numbers changing once Yervoy was used on people with earlier advanced disease and whose cancer had time for Yervoy to work.  It is a step, but I'm thankful melanoma treatment is heading in a direction where they're starting to figure it out.

                                    I know melanoma outsmarts the immune system, but these treatments are definately giving us all hope.I am 1 out of 2716 patients who are in a compassionate use Yervoy trial which I presume in 5 years will show better response rates than 20%.  We can't cling on to historical response rates – we have to move forward and change these numbers.      

                                    Alan, even though you havn't been able to finish this drug, it's great that your immune system has responded. If you can get your Absolute Lymphocyte count, you'll know just how much your immune system has reved up.  There are other treatments available – IL-2 seems to respond nicely after ipi. Anti PD-1 is good too, but apparently can't be done after ipi.

                                    Charlie is right – all treatments are historically uncertain – but we'll all do what we can to make it to the next breakout drug.

                                    I wish you much success in your journey.

                                    Lisa – Stage 4  

                                    AlanM
                                    Participant

                                      Thank you all for your responses.  I do have hope for success. My brain met is shrinking and I have no other mets in or on my body. I will certainly  ask for my ALC numbers on my next blood draw!

                                      Alan

                                       

                                      AlanM
                                      Participant

                                        Thank you all for your responses.  I do have hope for success. My brain met is shrinking and I have no other mets in or on my body. I will certainly  ask for my ALC numbers on my next blood draw!

                                        Alan

                                         

                                        AlanM
                                        Participant

                                          Thank you all for your responses.  I do have hope for success. My brain met is shrinking and I have no other mets in or on my body. I will certainly  ask for my ALC numbers on my next blood draw!

                                          Alan

                                           

                                          Charlie S
                                          Participant

                                            Hey Lisa,

                                            I wanted to expand a bit on this thread and sort out some of what I said and offer some granulation as well as speak to Alan, who was the original poster.

                                            I'm going to quote from a NYT article that gave a very good overview of Yervoy based upon FDA submittals, which will be in quotes.

                                            First, Ipilimumab (Yervoy) , if it works, is known to have a delayed effect.

                                            For Alan, " The effect of Yervoy on cancer is also different from chemotherapy drugs, which can quickly kill some cancerous cells. With Yervoy, it can take weeks for the immune system to mount its attack."

                                            “Many people with really aggressive melanoma don’t have that time,” Dr. Sosman said."

                                            Further…………"For most patients, tumors don’t shrink immediately and may even grow, making it hard to tell if the drug is working."

                                            So Alan, even though it does not appear to be working for you in the short term, it MAY in the long term; so don't dismiss it as not working just yet.

                                            Second, though you may believe what you want Lisa,, the ONLY reason Yervoy was approved is due to the so called "gold standard " of life expectancy, which was this, according to the trial results submitted as evidence to the FDA.

                                            "In that randomized clinical trial, patients with metastatic melanoma treated with Yervoy lived a median of about 10 months, compared with 6.4 months for patients in a control group, who received a treatment believed to have had little effect."

                                            So, we are talking about spending 120K to be able to light firecrackers in July and carve a turkey in November.  3.6 months at best.

                                            Beleive what you want Lisa, but I know of no scientific evidence that is supported by empirical evidence that even suggests  LDH levels have a corresponding value relative to the effacy of Yervoy, let alone offering anything other than a educated guess abouit how it might be of value for those clinically diagnosed and administered at an earlier stage.

                                            Hopefull?  You bet.  Certain?  No.

                                            You hang in there Alan, because what appears to be not working may just be working.  You hang in there too Lisa, But know this:  we are all in the same leaking boat that is Stage IV melanoma, and I'm paddling like hell with each of you to reach shore.

                                            Cheers,

                                            Charlie S

                                             

                                             

                                             

                                             

                                             

                                            Charlie S
                                            Participant

                                              Hey Lisa,

                                              I wanted to expand a bit on this thread and sort out some of what I said and offer some granulation as well as speak to Alan, who was the original poster.

                                              I'm going to quote from a NYT article that gave a very good overview of Yervoy based upon FDA submittals, which will be in quotes.

                                              First, Ipilimumab (Yervoy) , if it works, is known to have a delayed effect.

                                              For Alan, " The effect of Yervoy on cancer is also different from chemotherapy drugs, which can quickly kill some cancerous cells. With Yervoy, it can take weeks for the immune system to mount its attack."

                                              “Many people with really aggressive melanoma don’t have that time,” Dr. Sosman said."

                                              Further…………"For most patients, tumors don’t shrink immediately and may even grow, making it hard to tell if the drug is working."

                                              So Alan, even though it does not appear to be working for you in the short term, it MAY in the long term; so don't dismiss it as not working just yet.

                                              Second, though you may believe what you want Lisa,, the ONLY reason Yervoy was approved is due to the so called "gold standard " of life expectancy, which was this, according to the trial results submitted as evidence to the FDA.

                                              "In that randomized clinical trial, patients with metastatic melanoma treated with Yervoy lived a median of about 10 months, compared with 6.4 months for patients in a control group, who received a treatment believed to have had little effect."

                                              So, we are talking about spending 120K to be able to light firecrackers in July and carve a turkey in November.  3.6 months at best.

                                              Beleive what you want Lisa, but I know of no scientific evidence that is supported by empirical evidence that even suggests  LDH levels have a corresponding value relative to the effacy of Yervoy, let alone offering anything other than a educated guess abouit how it might be of value for those clinically diagnosed and administered at an earlier stage.

                                              Hopefull?  You bet.  Certain?  No.

                                              You hang in there Alan, because what appears to be not working may just be working.  You hang in there too Lisa, But know this:  we are all in the same leaking boat that is Stage IV melanoma, and I'm paddling like hell with each of you to reach shore.

                                              Cheers,

                                              Charlie S

                                               

                                               

                                               

                                               

                                               

                                              Charlie S
                                              Participant

                                                Hey Lisa,

                                                I wanted to expand a bit on this thread and sort out some of what I said and offer some granulation as well as speak to Alan, who was the original poster.

                                                I'm going to quote from a NYT article that gave a very good overview of Yervoy based upon FDA submittals, which will be in quotes.

                                                First, Ipilimumab (Yervoy) , if it works, is known to have a delayed effect.

                                                For Alan, " The effect of Yervoy on cancer is also different from chemotherapy drugs, which can quickly kill some cancerous cells. With Yervoy, it can take weeks for the immune system to mount its attack."

                                                “Many people with really aggressive melanoma don’t have that time,” Dr. Sosman said."

                                                Further…………"For most patients, tumors don’t shrink immediately and may even grow, making it hard to tell if the drug is working."

                                                So Alan, even though it does not appear to be working for you in the short term, it MAY in the long term; so don't dismiss it as not working just yet.

                                                Second, though you may believe what you want Lisa,, the ONLY reason Yervoy was approved is due to the so called "gold standard " of life expectancy, which was this, according to the trial results submitted as evidence to the FDA.

                                                "In that randomized clinical trial, patients with metastatic melanoma treated with Yervoy lived a median of about 10 months, compared with 6.4 months for patients in a control group, who received a treatment believed to have had little effect."

                                                So, we are talking about spending 120K to be able to light firecrackers in July and carve a turkey in November.  3.6 months at best.

                                                Beleive what you want Lisa, but I know of no scientific evidence that is supported by empirical evidence that even suggests  LDH levels have a corresponding value relative to the effacy of Yervoy, let alone offering anything other than a educated guess abouit how it might be of value for those clinically diagnosed and administered at an earlier stage.

                                                Hopefull?  You bet.  Certain?  No.

                                                You hang in there Alan, because what appears to be not working may just be working.  You hang in there too Lisa, But know this:  we are all in the same leaking boat that is Stage IV melanoma, and I'm paddling like hell with each of you to reach shore.

                                                Cheers,

                                                Charlie S

                                                 

                                                 

                                                 

                                                 

                                                 

                                              Charlie S
                                              Participant

                                                Though not popular, the melanoma community MUST recognize that Yervoy alone is not the singular answer to melanoma.

                                                It is a step.

                                                 I am sorry that this step has not had the joy you wanted Alan,,,,,,,,,,,,,,,,,,,,but it is unrealistic to think that it would be  for all people.

                                                Like it or not, Yervoy is still an experimental drug and the effectiveness of it in the general population is subject to question and it simply is too soon to tell.

                                                Pick a treatment for melanoma…………..any treatment, any year, any day, including Yervoy…………….and at the  VERY best (and I am being generous here)……………..is at best a 20% response rate.

                                                And you can not expect instant joy from any of them………..it may take time, and yervoy may take time.

                                                Historically, Melanoma is not a disease that lends itself to instant response………..rather it is an incremental disease that takes an incremental approach over a period of time; to either relinquish or demise.

                                                In short, it is too soon to expect an answer to something so historically uncertain based upon one new drug.

                                                However, I hope it finds you Joy

                                                Charlie S

                                                Charlie S
                                                Participant

                                                  Though not popular, the melanoma community MUST recognize that Yervoy alone is not the singular answer to melanoma.

                                                  It is a step.

                                                   I am sorry that this step has not had the joy you wanted Alan,,,,,,,,,,,,,,,,,,,,but it is unrealistic to think that it would be  for all people.

                                                  Like it or not, Yervoy is still an experimental drug and the effectiveness of it in the general population is subject to question and it simply is too soon to tell.

                                                  Pick a treatment for melanoma…………..any treatment, any year, any day, including Yervoy…………….and at the  VERY best (and I am being generous here)……………..is at best a 20% response rate.

                                                  And you can not expect instant joy from any of them………..it may take time, and yervoy may take time.

                                                  Historically, Melanoma is not a disease that lends itself to instant response………..rather it is an incremental disease that takes an incremental approach over a period of time; to either relinquish or demise.

                                                  In short, it is too soon to expect an answer to something so historically uncertain based upon one new drug.

                                                  However, I hope it finds you Joy

                                                  Charlie S

                                                  Dynasysman
                                                  Participant
                                                    Alan,

                                                    I also discontinued after my second infusion. Since my treatment was more adjuvant in nature (no identifiably active metastases), I cannot tell you whether it “worked.”. However, I can tell you that Yervoy was still having systemic effects on several key organ systems as late as 8 weeks after my last dose.

                                                    Charlie is correct. No therapy s the magic cure fir melanoma. However, the fact that you stopped after two doses does not necessarily mean that you only had active tumor fighting effects for six weeks. Yervoy could still be affecting your CTLA levels for some tim to come. It is a relatively new drug. No one knows for certain.

                                                    In the meantime, we all should always be learning, studying, and working on the next therapeutic option.

                                                    Strength a d good fortune in your fight.

                                                    Roger

                                                    Dynasysman
                                                    Participant
                                                      Alan,

                                                      I also discontinued after my second infusion. Since my treatment was more adjuvant in nature (no identifiably active metastases), I cannot tell you whether it “worked.”. However, I can tell you that Yervoy was still having systemic effects on several key organ systems as late as 8 weeks after my last dose.

                                                      Charlie is correct. No therapy s the magic cure fir melanoma. However, the fact that you stopped after two doses does not necessarily mean that you only had active tumor fighting effects for six weeks. Yervoy could still be affecting your CTLA levels for some tim to come. It is a relatively new drug. No one knows for certain.

                                                      In the meantime, we all should always be learning, studying, and working on the next therapeutic option.

                                                      Strength a d good fortune in your fight.

                                                      Roger

                                                      Dynasysman
                                                      Participant
                                                        Alan,

                                                        I also discontinued after my second infusion. Since my treatment was more adjuvant in nature (no identifiably active metastases), I cannot tell you whether it “worked.”. However, I can tell you that Yervoy was still having systemic effects on several key organ systems as late as 8 weeks after my last dose.

                                                        Charlie is correct. No therapy s the magic cure fir melanoma. However, the fact that you stopped after two doses does not necessarily mean that you only had active tumor fighting effects for six weeks. Yervoy could still be affecting your CTLA levels for some tim to come. It is a relatively new drug. No one knows for certain.

                                                        In the meantime, we all should always be learning, studying, and working on the next therapeutic option.

                                                        Strength a d good fortune in your fight.

                                                        Roger

                                                        Karin L
                                                        Participant

                                                          Keep up the fight Alan.  I have nothing to add except Dr. Richards is my doctor also.  I may begin ipi in Dec. but waiting for scan results 12/9. 

                                                          Karin

                                                          Karin L
                                                          Participant

                                                            Keep up the fight Alan.  I have nothing to add except Dr. Richards is my doctor also.  I may begin ipi in Dec. but waiting for scan results 12/9. 

                                                            Karin

                                                            Karin L
                                                            Participant

                                                              Keep up the fight Alan.  I have nothing to add except Dr. Richards is my doctor also.  I may begin ipi in Dec. but waiting for scan results 12/9. 

                                                              Karin

                                                              Rodensir
                                                              Participant

                                                                Hi

                                                                I had the MDX10 the experimental yervoy at NIH in the fall of 2003 on a trial basis.

                                                                After 2 doses had the same response plus the itching and other side effects.  It sucks!

                                                                Yes with only two dosed I become NED in March of 2004 and have remained that way.

                                                                Hope you have the same response  I know that what Charle S says is correct but there are some complete responders to drugs  like you are on.  NIH indicates that it is a small number IE Charlie stats are right but still there are complete NED responses also.

                                                                Hang in there

                                                                Allan

                                                                  AlanM
                                                                  Participant
                                                                    Thank you for your response. It is good to hear that there is, possibly, light at the end of this long tunnel.
                                                                    AlanM
                                                                    Participant
                                                                      Thank you for your response. It is good to hear that there is, possibly, light at the end of this long tunnel.
                                                                      AlanM
                                                                      Participant
                                                                        Thank you for your response. It is good to hear that there is, possibly, light at the end of this long tunnel.
                                                                        AlanM
                                                                        Participant
                                                                          Thank you for your response. It is good to hear that there is, possibly, light at the end of this long tunnel.
                                                                          AlanM
                                                                          Participant
                                                                            Thank you for your response. It is good to hear that there is, possibly, light at the end of this long tunnel.
                                                                            AlanM
                                                                            Participant
                                                                              Thank you for your response. It is good to hear that there is, possibly, light at the end of this long tunnel.
                                                                            Rodensir
                                                                            Participant

                                                                              Hi

                                                                              I had the MDX10 the experimental yervoy at NIH in the fall of 2003 on a trial basis.

                                                                              After 2 doses had the same response plus the itching and other side effects.  It sucks!

                                                                              Yes with only two dosed I become NED in March of 2004 and have remained that way.

                                                                              Hope you have the same response  I know that what Charle S says is correct but there are some complete responders to drugs  like you are on.  NIH indicates that it is a small number IE Charlie stats are right but still there are complete NED responses also.

                                                                              Hang in there

                                                                              Allan

                                                                              Rodensir
                                                                              Participant

                                                                                Hi

                                                                                I had the MDX10 the experimental yervoy at NIH in the fall of 2003 on a trial basis.

                                                                                After 2 doses had the same response plus the itching and other side effects.  It sucks!

                                                                                Yes with only two dosed I become NED in March of 2004 and have remained that way.

                                                                                Hope you have the same response  I know that what Charle S says is correct but there are some complete responders to drugs  like you are on.  NIH indicates that it is a small number IE Charlie stats are right but still there are complete NED responses also.

                                                                                Hang in there

                                                                                Allan

                                                                                Jim M.
                                                                                Participant

                                                                                  Hi Alan,

                                                                                   I had 4 doses of Yervoy back in 08 and had to quit early due to the side effect of  a swollen pituitary gland. My doctor, one of the Yervoy gurus, said that immune breakthrough events like a swollen pituitary or colitis or rash correlate with best outcomes. I went into the trial with resected melanoma so I had no tumor burden. My doc. conducted analyses of some of my white blood cells and found my immune response to be at least 5 times over baseline. He said if I were to to be retreated with Yervoy I wouldn't have had much more of a benefit. So I just go for follow-up scans every 6 months. I also do the healthy eating and exercise but don't do the latter enough.

                                                                                   I don't know if your doctor has done any blood analyses but the major side effect you had could signal a very positive response from Yervoy. I pray that is the case!

                                                                                   God Bless,

                                                                                   Jim M.

                                                                                   stage 3C

                                                                                  NED: 3 years, 11 months

                                                                                  Jim M.
                                                                                  Participant

                                                                                    Hi Alan,

                                                                                     I had 4 doses of Yervoy back in 08 and had to quit early due to the side effect of  a swollen pituitary gland. My doctor, one of the Yervoy gurus, said that immune breakthrough events like a swollen pituitary or colitis or rash correlate with best outcomes. I went into the trial with resected melanoma so I had no tumor burden. My doc. conducted analyses of some of my white blood cells and found my immune response to be at least 5 times over baseline. He said if I were to to be retreated with Yervoy I wouldn't have had much more of a benefit. So I just go for follow-up scans every 6 months. I also do the healthy eating and exercise but don't do the latter enough.

                                                                                     I don't know if your doctor has done any blood analyses but the major side effect you had could signal a very positive response from Yervoy. I pray that is the case!

                                                                                     God Bless,

                                                                                     Jim M.

                                                                                     stage 3C

                                                                                    NED: 3 years, 11 months

                                                                                    Jim M.
                                                                                    Participant

                                                                                      Hi Alan,

                                                                                       I had 4 doses of Yervoy back in 08 and had to quit early due to the side effect of  a swollen pituitary gland. My doctor, one of the Yervoy gurus, said that immune breakthrough events like a swollen pituitary or colitis or rash correlate with best outcomes. I went into the trial with resected melanoma so I had no tumor burden. My doc. conducted analyses of some of my white blood cells and found my immune response to be at least 5 times over baseline. He said if I were to to be retreated with Yervoy I wouldn't have had much more of a benefit. So I just go for follow-up scans every 6 months. I also do the healthy eating and exercise but don't do the latter enough.

                                                                                       I don't know if your doctor has done any blood analyses but the major side effect you had could signal a very positive response from Yervoy. I pray that is the case!

                                                                                       God Bless,

                                                                                       Jim M.

                                                                                       stage 3C

                                                                                      NED: 3 years, 11 months

                                                                                      Hereiam
                                                                                      Participant

                                                                                        Hi,

                                                                                        I have heard that the severe side-effects created by Yervoy might be decreased with the help of additional treatment. I know Alan, that even more medicine is not what you want right now, but I think, it is worth considering. I agree with those, who say that often one medicine alone is very much ineffective to melanoma. So, while there is no magical treatment method for melanoma, it is worth to consider combining yervoy with something, that is natural, not modified, activates your immune system and decreases the side-effects you have from yervoy. I would advise to give virotherapy a try, b/c to many people it has worked out well, but as so many ppl out there are against it, try to find another way.

                                                                                        Be strong, patient and believe in recovery!

                                                                                          AlanM
                                                                                          Participant

                                                                                            I have used Ayurveda(ancient medicine from India) as my immuno-booster/alternative treatment along with some high-dose intravenous vitamin C over the summer. I spent two months of this year, February and March, in Hyderabad seeing a doctor that has sucessfully treated cancer patients in the past. I continue to take those herbs and plan to go back Mid-2012. Although I am in a western-medicine holding pattern until mid-November, I am certainly keeping my eyes and ears open and learning about additional treatment options. I do believe in recovery!

                                                                                            Alan

                                                                                            Stage IV with one(shrinking!) brain met.

                                                                                            Hereiam
                                                                                            Participant

                                                                                              I am really happy to finally here from somebody, who doesn`t consider chemo as the only and the best treatment for cancer! Thank you for that! I truly believe, that alternative/additional medicine should be combined with chemo in order to prevent the demaging side-effects.

                                                                                              And I, as you, try very hard to explore the alternative medicina and its offers,

                                                                                              Take care,

                                                                                              A

                                                                                              Hereiam
                                                                                              Participant

                                                                                                I am really happy to finally here from somebody, who doesn`t consider chemo as the only and the best treatment for cancer! Thank you for that! I truly believe, that alternative/additional medicine should be combined with chemo in order to prevent the demaging side-effects.

                                                                                                And I, as you, try very hard to explore the alternative medicina and its offers,

                                                                                                Take care,

                                                                                                A

                                                                                                Hereiam
                                                                                                Participant

                                                                                                  I am really happy to finally here from somebody, who doesn`t consider chemo as the only and the best treatment for cancer! Thank you for that! I truly believe, that alternative/additional medicine should be combined with chemo in order to prevent the demaging side-effects.

                                                                                                  And I, as you, try very hard to explore the alternative medicina and its offers,

                                                                                                  Take care,

                                                                                                  A

                                                                                                  AlanM
                                                                                                  Participant

                                                                                                    I have used Ayurveda(ancient medicine from India) as my immuno-booster/alternative treatment along with some high-dose intravenous vitamin C over the summer. I spent two months of this year, February and March, in Hyderabad seeing a doctor that has sucessfully treated cancer patients in the past. I continue to take those herbs and plan to go back Mid-2012. Although I am in a western-medicine holding pattern until mid-November, I am certainly keeping my eyes and ears open and learning about additional treatment options. I do believe in recovery!

                                                                                                    Alan

                                                                                                    Stage IV with one(shrinking!) brain met.

                                                                                                    AlanM
                                                                                                    Participant

                                                                                                      I have used Ayurveda(ancient medicine from India) as my immuno-booster/alternative treatment along with some high-dose intravenous vitamin C over the summer. I spent two months of this year, February and March, in Hyderabad seeing a doctor that has sucessfully treated cancer patients in the past. I continue to take those herbs and plan to go back Mid-2012. Although I am in a western-medicine holding pattern until mid-November, I am certainly keeping my eyes and ears open and learning about additional treatment options. I do believe in recovery!

                                                                                                      Alan

                                                                                                      Stage IV with one(shrinking!) brain met.

                                                                                                    Hereiam
                                                                                                    Participant

                                                                                                      Hi,

                                                                                                      I have heard that the severe side-effects created by Yervoy might be decreased with the help of additional treatment. I know Alan, that even more medicine is not what you want right now, but I think, it is worth considering. I agree with those, who say that often one medicine alone is very much ineffective to melanoma. So, while there is no magical treatment method for melanoma, it is worth to consider combining yervoy with something, that is natural, not modified, activates your immune system and decreases the side-effects you have from yervoy. I would advise to give virotherapy a try, b/c to many people it has worked out well, but as so many ppl out there are against it, try to find another way.

                                                                                                      Be strong, patient and believe in recovery!

                                                                                                      Hereiam
                                                                                                      Participant

                                                                                                        Hi,

                                                                                                        I have heard that the severe side-effects created by Yervoy might be decreased with the help of additional treatment. I know Alan, that even more medicine is not what you want right now, but I think, it is worth considering. I agree with those, who say that often one medicine alone is very much ineffective to melanoma. So, while there is no magical treatment method for melanoma, it is worth to consider combining yervoy with something, that is natural, not modified, activates your immune system and decreases the side-effects you have from yervoy. I would advise to give virotherapy a try, b/c to many people it has worked out well, but as so many ppl out there are against it, try to find another way.

                                                                                                        Be strong, patient and believe in recovery!

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