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ASCO Meetings–Yervoy and Zelboraf

Forums General Melanoma Community ASCO Meetings–Yervoy and Zelboraf

  • Post
    mrf
    Keymaster

      I have had some great hallway and off-line conversations during ASCO so far, and hopefully more to come.

      I have had some great hallway and off-line conversations during ASCO so far, and hopefully more to come.

      I had heard in the past that some patients are not being offered Yervoy because their doctors see few melanoma patients and didn't feel comfortable prescribing it.  This is, I think, a major issue.  Is it unethical for a physician to prescribe a course of treatment that has little likelihood of offering benefit simply because they are more familiar with that treatment approach?  If a doctor doesn't feel they can manage the side effects of a drug should they refer the patient to another treatment center or simply not mention that drug to the patient?

      I have heard now from several sources that this is exactly the behavior that is happening, and that it is happening far too often.  I also have heard that a similar challenge is happening with Zelboraf.  Many patients with advanced melanoma are not being tested for BRAF mutation, even though an approved drug on the market has shown very strong responses for patients.

      We are considering creating an educational program for doctors to provide updates on treating melanoma, but I wonder if a better approach is to do more education for patients so they demand the testing they deserve.  I know that people on this board are very active in pursuing good treatment options, but I worry about the patient who does not access the internet and is being treated by a doctor who sees maybe one or two melanomas a year. How do we reach those people?

      Tim–MRF

    Viewing 17 reply threads
    • Replies
        awillett1991
        Participant
          The info session sponsered by MRF and held at Vanderbilt this spring was perfect for an older friend I sent with MM. They don’t use the Internet and their doc isn’t experienced. I don’t know how you reach the docs. You’d think the drug reps would be out in force. Thanks for all these update Tim. Much appreciated!

          Amy Willett

          awillett1991
          Participant
            The info session sponsered by MRF and held at Vanderbilt this spring was perfect for an older friend I sent with MM. They don’t use the Internet and their doc isn’t experienced. I don’t know how you reach the docs. You’d think the drug reps would be out in force. Thanks for all these update Tim. Much appreciated!

            Amy Willett

            awillett1991
            Participant
              The info session sponsered by MRF and held at Vanderbilt this spring was perfect for an older friend I sent with MM. They don’t use the Internet and their doc isn’t experienced. I don’t know how you reach the docs. You’d think the drug reps would be out in force. Thanks for all these update Tim. Much appreciated!

              Amy Willett

              cltml
              Participant

                I agree with Amy.  We care about this information because our lives are on the line, but there's a population out there that doesn't have the "resources" (great caregiver, a knowlege of the intertubes, a nearby center of excellence, etc).  If this population doesn't have the information, they are only going to get it from their doctors.  At $120,000.00 a pop, BMS has a great incentive to get information about yervoy to the docs.  Where are they on this?  With us (MRF and your members/users), it's a moral issue, with the drug companies, it's a financial issue).

                cltml

                cltml
                Participant

                  I agree with Amy.  We care about this information because our lives are on the line, but there's a population out there that doesn't have the "resources" (great caregiver, a knowlege of the intertubes, a nearby center of excellence, etc).  If this population doesn't have the information, they are only going to get it from their doctors.  At $120,000.00 a pop, BMS has a great incentive to get information about yervoy to the docs.  Where are they on this?  With us (MRF and your members/users), it's a moral issue, with the drug companies, it's a financial issue).

                  cltml

                  cltml
                  Participant

                    I agree with Amy.  We care about this information because our lives are on the line, but there's a population out there that doesn't have the "resources" (great caregiver, a knowlege of the intertubes, a nearby center of excellence, etc).  If this population doesn't have the information, they are only going to get it from their doctors.  At $120,000.00 a pop, BMS has a great incentive to get information about yervoy to the docs.  Where are they on this?  With us (MRF and your members/users), it's a moral issue, with the drug companies, it's a financial issue).

                    cltml

                    MaryD
                    Participant

                      I think there are some very real issues here and when Yervoy was approved, I had frankly been concerned how the potentially dangerous side effects might be handled by physicians who were not very familiar with the drug. A few years ago I participated in an Ipi trial with Dr. Weber at Moffitt At that time, I was given explicit information on what do do when side effects occurrred and to , in no uncertain terms, page Dr. Weber should side effects like diarrhea begin to surface so that they could be controlled quickly.

                      These are very new classes of treatments and I feel strongly that they should be administered by physicians who are experienced with melanoma or who have gone through some extensive training.   However, it goes without saying that it is verging on unethical for a physician, who might not be familiar with these treatments, to avoid recommending a patient be tested for Braf or other mutations.   One would hope that if the testing were positive, the physican would refer the patient to a melanoma center for treatment.

                      I think in the larger scheme of things, an educational program for physicians would be an excellent step forward.   Not every patient resides in close proximity to a melanoma center and it would be in everyone's best interest for doctors, who may practice in community hospital settings, to be educated and comfortable administering these drugs.

                      I agree as well, that offering more education to patients is clearly important – but also challenging as you mention – to reach those who do not seek it out.     Perhaps supplying more literature about these testing procedures and treatments to local oncology offices and dermatologists could be a start.

                      Thanks for the updates from ASCO!

                      Mary

                      MaryD
                      Participant

                        I think there are some very real issues here and when Yervoy was approved, I had frankly been concerned how the potentially dangerous side effects might be handled by physicians who were not very familiar with the drug. A few years ago I participated in an Ipi trial with Dr. Weber at Moffitt At that time, I was given explicit information on what do do when side effects occurrred and to , in no uncertain terms, page Dr. Weber should side effects like diarrhea begin to surface so that they could be controlled quickly.

                        These are very new classes of treatments and I feel strongly that they should be administered by physicians who are experienced with melanoma or who have gone through some extensive training.   However, it goes without saying that it is verging on unethical for a physician, who might not be familiar with these treatments, to avoid recommending a patient be tested for Braf or other mutations.   One would hope that if the testing were positive, the physican would refer the patient to a melanoma center for treatment.

                        I think in the larger scheme of things, an educational program for physicians would be an excellent step forward.   Not every patient resides in close proximity to a melanoma center and it would be in everyone's best interest for doctors, who may practice in community hospital settings, to be educated and comfortable administering these drugs.

                        I agree as well, that offering more education to patients is clearly important – but also challenging as you mention – to reach those who do not seek it out.     Perhaps supplying more literature about these testing procedures and treatments to local oncology offices and dermatologists could be a start.

                        Thanks for the updates from ASCO!

                        Mary

                        MaryD
                        Participant

                          I think there are some very real issues here and when Yervoy was approved, I had frankly been concerned how the potentially dangerous side effects might be handled by physicians who were not very familiar with the drug. A few years ago I participated in an Ipi trial with Dr. Weber at Moffitt At that time, I was given explicit information on what do do when side effects occurrred and to , in no uncertain terms, page Dr. Weber should side effects like diarrhea begin to surface so that they could be controlled quickly.

                          These are very new classes of treatments and I feel strongly that they should be administered by physicians who are experienced with melanoma or who have gone through some extensive training.   However, it goes without saying that it is verging on unethical for a physician, who might not be familiar with these treatments, to avoid recommending a patient be tested for Braf or other mutations.   One would hope that if the testing were positive, the physican would refer the patient to a melanoma center for treatment.

                          I think in the larger scheme of things, an educational program for physicians would be an excellent step forward.   Not every patient resides in close proximity to a melanoma center and it would be in everyone's best interest for doctors, who may practice in community hospital settings, to be educated and comfortable administering these drugs.

                          I agree as well, that offering more education to patients is clearly important – but also challenging as you mention – to reach those who do not seek it out.     Perhaps supplying more literature about these testing procedures and treatments to local oncology offices and dermatologists could be a start.

                          Thanks for the updates from ASCO!

                          Mary

                          RMcLegal
                          Participant

                            Tim, you raise a very real problem with the current state of melanoma treatment.  Every time I get the chance, I advise patients to see an oncologist who specializes in melanoma treatment.  But, unfortunately, that just isn't possible for everyone and too many of us are under the care of an oncologist who sees one or two new melanoma cases a year.  There is a vibrant network of awareness advocates out there with blogs and facebook pages, where a new patient can find information about the best options for treatment and a support group of great fighters who've had those treatments.  We all strive to reach more people and are frustrated that we don't.  I don't know the answer to your question, but I thank you for raising it!

                            Rich

                            http://www.hotelmelanoma.blogspot.com

                            RMcLegal
                            Participant

                              Tim, you raise a very real problem with the current state of melanoma treatment.  Every time I get the chance, I advise patients to see an oncologist who specializes in melanoma treatment.  But, unfortunately, that just isn't possible for everyone and too many of us are under the care of an oncologist who sees one or two new melanoma cases a year.  There is a vibrant network of awareness advocates out there with blogs and facebook pages, where a new patient can find information about the best options for treatment and a support group of great fighters who've had those treatments.  We all strive to reach more people and are frustrated that we don't.  I don't know the answer to your question, but I thank you for raising it!

                              Rich

                              http://www.hotelmelanoma.blogspot.com

                              RMcLegal
                              Participant

                                Tim, you raise a very real problem with the current state of melanoma treatment.  Every time I get the chance, I advise patients to see an oncologist who specializes in melanoma treatment.  But, unfortunately, that just isn't possible for everyone and too many of us are under the care of an oncologist who sees one or two new melanoma cases a year.  There is a vibrant network of awareness advocates out there with blogs and facebook pages, where a new patient can find information about the best options for treatment and a support group of great fighters who've had those treatments.  We all strive to reach more people and are frustrated that we don't.  I don't know the answer to your question, but I thank you for raising it!

                                Rich

                                http://www.hotelmelanoma.blogspot.com

                                paul
                                Participant

                                  Thanks, Tim, for raising this, and for sharing what you learn at ASCO.

                                  In my view, it's clearly unethical to prescribe ineffective, 20 year old treatments when there are better treatments out there. In the age of the internet, as you say, inequalities in patient access to knowledge may, regretably, be sharpened, but ignorance among doctors ought to be unacceptable–MDs who prescribe toxic drugs should be required to do basic internet searches and share the results with patients, and it seems that it would be a relatively simple first step to create an easy-to-read guide for local/front-line oncologists without the initiative to look at, say, the treatments recommended at major hospitals or cancer institutes, let alone at clinical trials results. In the scenario you present above there is a suggestion, too, that doctors withhold information for financial reasons. If that is the case, and a doctor knows there are alternatives but secrets them for this reason, it would seem there would be some grounds criminal charges?

                                  Paul

                                  paul
                                  Participant

                                    Thanks, Tim, for raising this, and for sharing what you learn at ASCO.

                                    In my view, it's clearly unethical to prescribe ineffective, 20 year old treatments when there are better treatments out there. In the age of the internet, as you say, inequalities in patient access to knowledge may, regretably, be sharpened, but ignorance among doctors ought to be unacceptable–MDs who prescribe toxic drugs should be required to do basic internet searches and share the results with patients, and it seems that it would be a relatively simple first step to create an easy-to-read guide for local/front-line oncologists without the initiative to look at, say, the treatments recommended at major hospitals or cancer institutes, let alone at clinical trials results. In the scenario you present above there is a suggestion, too, that doctors withhold information for financial reasons. If that is the case, and a doctor knows there are alternatives but secrets them for this reason, it would seem there would be some grounds criminal charges?

                                    Paul

                                    paul
                                    Participant

                                      Thanks, Tim, for raising this, and for sharing what you learn at ASCO.

                                      In my view, it's clearly unethical to prescribe ineffective, 20 year old treatments when there are better treatments out there. In the age of the internet, as you say, inequalities in patient access to knowledge may, regretably, be sharpened, but ignorance among doctors ought to be unacceptable–MDs who prescribe toxic drugs should be required to do basic internet searches and share the results with patients, and it seems that it would be a relatively simple first step to create an easy-to-read guide for local/front-line oncologists without the initiative to look at, say, the treatments recommended at major hospitals or cancer institutes, let alone at clinical trials results. In the scenario you present above there is a suggestion, too, that doctors withhold information for financial reasons. If that is the case, and a doctor knows there are alternatives but secrets them for this reason, it would seem there would be some grounds criminal charges?

                                      Paul

                                      Phil S
                                      Participant
                                        I have also thought about this topic, since we live in a small rural area and travel to a small town to see our local oncologist. He is a great, caring, knowledgeable, and straight forward doctor, but there is no way he can keep up on the mutations and drugs in the ever changing world of melanoma. Obviously, he is dealing with every form of cancer and more traditional treatments, and that keeps him very busy! He has never given yervoy and Zelboraf, but was willing to monitor Phil if our melanoma specialist communicated the side effects. There is also no way, my husband’s tumor would have been braf and ckit tested in our local area. I really think the resources have to be used to get melanoma patients (who don’t have the financial means) to the nearest melanoma center where the initial workup can be done by knowledgeable doctors who only treat melanoma! Then, their local doctor can supervise the plan! We traveled both to Boston and Houston for Phil’s treatment and are currently during a clinical trial in Texas, maybe melanoma monies could also be allocated to get people in need to appropriate clinical trials. We can afford our trips, with alot of help from family, but I often wonder how others get to melanoma centers, in an ideal world they should have that right, too. Just my two cents! Valerie (Phil’s wife)
                                        Phil S
                                        Participant
                                          I have also thought about this topic, since we live in a small rural area and travel to a small town to see our local oncologist. He is a great, caring, knowledgeable, and straight forward doctor, but there is no way he can keep up on the mutations and drugs in the ever changing world of melanoma. Obviously, he is dealing with every form of cancer and more traditional treatments, and that keeps him very busy! He has never given yervoy and Zelboraf, but was willing to monitor Phil if our melanoma specialist communicated the side effects. There is also no way, my husband’s tumor would have been braf and ckit tested in our local area. I really think the resources have to be used to get melanoma patients (who don’t have the financial means) to the nearest melanoma center where the initial workup can be done by knowledgeable doctors who only treat melanoma! Then, their local doctor can supervise the plan! We traveled both to Boston and Houston for Phil’s treatment and are currently during a clinical trial in Texas, maybe melanoma monies could also be allocated to get people in need to appropriate clinical trials. We can afford our trips, with alot of help from family, but I often wonder how others get to melanoma centers, in an ideal world they should have that right, too. Just my two cents! Valerie (Phil’s wife)
                                            Snickers60
                                            Participant

                                              When Wayne was hospitalized here in week two of ZEL, with fever, his doc HERE, had never even seen ZEL.  He ask to look at the pill.  That made us feel CONFIDENT !  LOLOL   But not so much.   Wouldn't stop in a small town for anything with MEL.

                                              You just have to go to the best of the best of the best however you can get there. 

                                              My heart bleeds for people who are not in the Know……..don't wanna be………or just TRUST DOCS like they are gods and never question their treatments or knowledge or credentials.     So many good people lead astray with a trusting spirit.

                                              We are going to MDA, but I thought Wayne was TOXIC with too much ZEL, but our Doc demanded Wayne keep taking the full dose.   He is in 6th week now and has little pain, you can barely see the rash and it does not itch – he has not lostall his hair, and is finally sleeping.   He does have some nausea and is doing all kinds of shakes to maintain his weight.

                                              He was off ZEL for 48 hours and then back on full dose……….he never had the high fevers again, but does have low grade

                                              sometimes at night.   We think he did not fully understand the INTENSITY OF THE SUN at that point, but it did pass and though the SUN is still a huge problem, the fevers are not.

                                              Thanks for all input …………..DOCTORS NEED TO BE EDUCATED as well as PATIENTS !  

                                              Nancy (devoted wife of 3 X warrior Wayne)

                                              Snickers60
                                              Participant

                                                When Wayne was hospitalized here in week two of ZEL, with fever, his doc HERE, had never even seen ZEL.  He ask to look at the pill.  That made us feel CONFIDENT !  LOLOL   But not so much.   Wouldn't stop in a small town for anything with MEL.

                                                You just have to go to the best of the best of the best however you can get there. 

                                                My heart bleeds for people who are not in the Know……..don't wanna be………or just TRUST DOCS like they are gods and never question their treatments or knowledge or credentials.     So many good people lead astray with a trusting spirit.

                                                We are going to MDA, but I thought Wayne was TOXIC with too much ZEL, but our Doc demanded Wayne keep taking the full dose.   He is in 6th week now and has little pain, you can barely see the rash and it does not itch – he has not lostall his hair, and is finally sleeping.   He does have some nausea and is doing all kinds of shakes to maintain his weight.

                                                He was off ZEL for 48 hours and then back on full dose……….he never had the high fevers again, but does have low grade

                                                sometimes at night.   We think he did not fully understand the INTENSITY OF THE SUN at that point, but it did pass and though the SUN is still a huge problem, the fevers are not.

                                                Thanks for all input …………..DOCTORS NEED TO BE EDUCATED as well as PATIENTS !  

                                                Nancy (devoted wife of 3 X warrior Wayne)

                                                Snickers60
                                                Participant

                                                  When Wayne was hospitalized here in week two of ZEL, with fever, his doc HERE, had never even seen ZEL.  He ask to look at the pill.  That made us feel CONFIDENT !  LOLOL   But not so much.   Wouldn't stop in a small town for anything with MEL.

                                                  You just have to go to the best of the best of the best however you can get there. 

                                                  My heart bleeds for people who are not in the Know……..don't wanna be………or just TRUST DOCS like they are gods and never question their treatments or knowledge or credentials.     So many good people lead astray with a trusting spirit.

                                                  We are going to MDA, but I thought Wayne was TOXIC with too much ZEL, but our Doc demanded Wayne keep taking the full dose.   He is in 6th week now and has little pain, you can barely see the rash and it does not itch – he has not lostall his hair, and is finally sleeping.   He does have some nausea and is doing all kinds of shakes to maintain his weight.

                                                  He was off ZEL for 48 hours and then back on full dose……….he never had the high fevers again, but does have low grade

                                                  sometimes at night.   We think he did not fully understand the INTENSITY OF THE SUN at that point, but it did pass and though the SUN is still a huge problem, the fevers are not.

                                                  Thanks for all input …………..DOCTORS NEED TO BE EDUCATED as well as PATIENTS !  

                                                  Nancy (devoted wife of 3 X warrior Wayne)

                                                Phil S
                                                Participant
                                                  I have also thought about this topic, since we live in a small rural area and travel to a small town to see our local oncologist. He is a great, caring, knowledgeable, and straight forward doctor, but there is no way he can keep up on the mutations and drugs in the ever changing world of melanoma. Obviously, he is dealing with every form of cancer and more traditional treatments, and that keeps him very busy! He has never given yervoy and Zelboraf, but was willing to monitor Phil if our melanoma specialist communicated the side effects. There is also no way, my husband’s tumor would have been braf and ckit tested in our local area. I really think the resources have to be used to get melanoma patients (who don’t have the financial means) to the nearest melanoma center where the initial workup can be done by knowledgeable doctors who only treat melanoma! Then, their local doctor can supervise the plan! We traveled both to Boston and Houston for Phil’s treatment and are currently during a clinical trial in Texas, maybe melanoma monies could also be allocated to get people in need to appropriate clinical trials. We can afford our trips, with alot of help from family, but I often wonder how others get to melanoma centers, in an ideal world they should have that right, too. Just my two cents! Valerie (Phil’s wife)
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