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Most promising treatments – comments invited

Forums General Melanoma Community Most promising treatments – comments invited

  • Post
    FormerCaregiver
    Participant

      Here is my updated list of some of the most promising treatment options (depending on
      eligibility criteria). Although I have tried to list them in order of efficacy, I am
      really just making some educated guesses here.

      1. Adoptive cell therapy (also called TIL treatment). It looks like this offers the
      greatest chance of achieving durable remission in some cases.

      2. GM-CSF (Leukine) together surgery when needed. Some long-term melanoma warriors are
      using this approach.

      3. Yervoy (ipilimumab)

      Here is my updated list of some of the most promising treatment options (depending on
      eligibility criteria). Although I have tried to list them in order of efficacy, I am
      really just making some educated guesses here.

      1. Adoptive cell therapy (also called TIL treatment). It looks like this offers the
      greatest chance of achieving durable remission in some cases.

      2. GM-CSF (Leukine) together surgery when needed. Some long-term melanoma warriors are
      using this approach.

      3. Yervoy (ipilimumab)
      4. BRAF and MEK inhibitors
      5. IL-2
      6. Other treatments such as chemo and biochemo.

      The biggest problem that we face in trying to decide on treatments is a lack of reliable,
      unbiased, and up to date information.

      The other main thing to keep in mind is the medical term "overall survival". As far as I
      know, only adoptive cell therapy and Yervoy have been shown to improve this in a
      statistically significant amount of patients.

      I look forward to your comment on the above.

      Best wishes

      Frank from Australia

    Viewing 9 reply threads
    • Replies
        JerryfromFauq
        Participant
          Frank, Just my thoughts from my approximately 10 year journey against my form of this disease.
          Surgery, when possible, is the best hope for relief, though the long term results, as with everything else, are not guaranteed.
          Historically IL-2 has been the most successful general Melanoma stage IV durable treatment and partial response provided to date. Some people have achieved durable remission that has lasted around twenty years to date (Still going 5-7%) Partial responders plus durable responders total 20-22% of the general Melanoma stage Iv patients treated with IL-2. They are trying to identify why it works on the people it does.

          In the highest ranking tests with Ipi {Yervoy)they restricted who could participate. Still it appears to have an similar partial response rate as Il-2. Time will tell about the general long term durable remission rate. The hype about Ipi being the only treatment that has shown any increase in survivability (2 1/2 months) is a false statement. IL-2 has provided similar(or better) numbers to the general melanoma population for over ten years.
          Ipi should be a great new partner in the fight Jimmy B has shown how the possibility of using Ipi and IL-2 as a team might be the best way to go for the general population to date. Again, when will we learn just who even they will work on?

          I have not looked into GM-CSF as to what restrictions have been placed on the melanoma patients allowed into their trials. Their published numbers look good, but I have seen no proof that for the general Stage IV patient it will be superior to IL-2. For a particular patient it may well be the best try. Not enough is known to say what it’s rank will be, but it is certainly worth a try if available and one meets the criteria for trying it.

          BRAF treatments are for a very specialized group of patients. They are a great start and time buyer for at least 50+ percent of the 50-60% of melanoma patients that have one of the BRAF DNA mutations that each of the drugs are targeted at. Long term results are unknown due to the newness of the treatments. Most likely will be teamed with another treatment (possibly MEK) to extend the survivability time. Future progress should be exciting in this area of targeted therapy.

          C-kit type drugs are targeted at a very selective sub group of a subgroup of a subgroup. Current testing is showing that if one falls in the small number of the eligibles for these targeted drugs, they can also be definite life savers. (Not for the general melanoma population.)

          TIL also appears to be an interesting approach for the eligible participants. It to has a limited population as to who is eligible for it’s usage.

          The bottom line is that more information is needed as to what a persons particular DNA mutation is and what treatment will attack that particular DNA mutation.

          It is quite likely that there may never be a general melanoma “Cure”. The near term at least appears to be semi-individualized based on the particular DNA mutation ones tumors have. The problem is that Melanoma is not just one “cancer” It is many different cancer mutations. A common point of attack for melanoma is not close to identity.

          As to the other general melanoma chemo treatments, many work on a very few people. The problem is determining what will work on which patient without causing too much deterioration in the patient.

            Teodora
            Guest

              Hi Jerry,

              I have been following your postings both here and on melanomaintl.org;the information you provided has been truly  priceless!

              I have an appointment  to see an oncologist chematologist on June 7th to discuss possible further treatments;and I will discuss with him the newest treatments/vaccines as mentioned here by Frank and you.

              I haven't been tested for C-kit /BRAF genes yet.I understand BRAF gene is predominantly found in 50-60% in cutaneous melanoma, but only 10% in mucosal- which is my case.C-kit is found in 40 % of mucosal melanoma;I remember you mentioned that given my primary location/cervical melanoma/ I have 20% chance to have the C-kit gene;where did you get this specific information from?Also my question is are there any other gene mutations  the  lab in Oregon could possibly test my slides f for?I  also intuitevely believed it comes right   down to individual genes and that  they have to  eventually  find the right gene mutation to turn off, simply put;I believe an  individual targeted therapy to attack the specific gene mutation expressed in tumors as you mentioned already  is the way to go.

              My E-mail is [email protected]

              Any advice on the topic would be highly appreciated,

              Best Regards,

              Teodora

              Teodora
              Guest

                Hi Jerry,

                I have been following your postings both here and on melanomaintl.org;the information you provided has been truly  priceless!

                I have an appointment  to see an oncologist chematologist on June 7th to discuss possible further treatments;and I will discuss with him the newest treatments/vaccines as mentioned here by Frank and you.

                I haven't been tested for C-kit /BRAF genes yet.I understand BRAF gene is predominantly found in 50-60% in cutaneous melanoma, but only 10% in mucosal- which is my case.C-kit is found in 40 % of mucosal melanoma;I remember you mentioned that given my primary location/cervical melanoma/ I have 20% chance to have the C-kit gene;where did you get this specific information from?Also my question is are there any other gene mutations  the  lab in Oregon could possibly test my slides f for?I  also intuitevely believed it comes right   down to individual genes and that  they have to  eventually  find the right gene mutation to turn off, simply put;I believe an  individual targeted therapy to attack the specific gene mutation expressed in tumors as you mentioned already  is the way to go.

                My E-mail is [email protected]

                Any advice on the topic would be highly appreciated,

                Best Regards,

                Teodora

              JerryfromFauq
              Participant
                Frank, Just my thoughts from my approximately 10 year journey against my form of this disease.
                Surgery, when possible, is the best hope for relief, though the long term results, as with everything else, are not guaranteed.
                Historically IL-2 has been the most successful general Melanoma stage IV durable treatment and partial response provided to date. Some people have achieved durable remission that has lasted around twenty years to date (Still going 5-7%) Partial responders plus durable responders total 20-22% of the general Melanoma stage Iv patients treated with IL-2. They are trying to identify why it works on the people it does.

                In the highest ranking tests with Ipi {Yervoy)they restricted who could participate. Still it appears to have an similar partial response rate as Il-2. Time will tell about the general long term durable remission rate. The hype about Ipi being the only treatment that has shown any increase in survivability (2 1/2 months) is a false statement. IL-2 has provided similar(or better) numbers to the general melanoma population for over ten years.
                Ipi should be a great new partner in the fight Jimmy B has shown how the possibility of using Ipi and IL-2 as a team might be the best way to go for the general population to date. Again, when will we learn just who even they will work on?

                I have not looked into GM-CSF as to what restrictions have been placed on the melanoma patients allowed into their trials. Their published numbers look good, but I have seen no proof that for the general Stage IV patient it will be superior to IL-2. For a particular patient it may well be the best try. Not enough is known to say what it’s rank will be, but it is certainly worth a try if available and one meets the criteria for trying it.

                BRAF treatments are for a very specialized group of patients. They are a great start and time buyer for at least 50+ percent of the 50-60% of melanoma patients that have one of the BRAF DNA mutations that each of the drugs are targeted at. Long term results are unknown due to the newness of the treatments. Most likely will be teamed with another treatment (possibly MEK) to extend the survivability time. Future progress should be exciting in this area of targeted therapy.

                C-kit type drugs are targeted at a very selective sub group of a subgroup of a subgroup. Current testing is showing that if one falls in the small number of the eligibles for these targeted drugs, they can also be definite life savers. (Not for the general melanoma population.)

                TIL also appears to be an interesting approach for the eligible participants. It to has a limited population as to who is eligible for it’s usage.

                The bottom line is that more information is needed as to what a persons particular DNA mutation is and what treatment will attack that particular DNA mutation.

                It is quite likely that there may never be a general melanoma “Cure”. The near term at least appears to be semi-individualized based on the particular DNA mutation ones tumors have. The problem is that Melanoma is not just one “cancer” It is many different cancer mutations. A common point of attack for melanoma is not close to identity.

                As to the other general melanoma chemo treatments, many work on a very few people. The problem is determining what will work on which patient without causing too much deterioration in the patient.

                rbruce
                Participant

                  Since Melanoma is such an individualized disease, the order of promise for treatments varies greatly by individual.  My NRAS mutation represents only about 20% of patients so any of the new developments for Braf + don't apply to me.  The gold standard is still IL-2 for long term durable response and can be as high as 7-10% with the right patient group.  When California Pacific Medical Center in SF reviewed 135 patients that they had treated with Biochemotherapy (chemo + IL2 + Interferon) their numbers looked even better: (taken from their website at: http://www.cpmc.org/services/cancer/melanoma/treatment/ )

                  "Biochemotherapy is an intensive drug treatment regime that combines three chemotherapy drugs, Cisplatin, Velban (Vinblastine), Temodar (Temozolamide), with two active biological agents, interleukin 2 (IL-2) and interferon. Biochemotherapy is used on select patients with metastatic cancer. During biochemotherapy sessions, patients are admitted to the hospital and over four days receive intensive treatment with these five different drugs. This cycle is repeated six times at three-week intervals, after which patients are admitted for two-day treatments once a month for the next one to two years. The treatments can be unpleasant and physically incapacitating, with side effects ranging from nausea and vomiting to systemic inflammatory response, inflaming the patient’s entire body including joints and vital organs.

                  Recent review of 135 patients treated at California Pacific Medical Center with biochemotherapy show a 5 year survival of 25% who are alive and cancer free. This is higher than with chemotherapy alone."

                  ………………………………………………………………………end web article……

                  If you are interested, I urge you to check out the linked study "Prognostic Factors in Metastatic Melanoma Patients Treated with Biochemochemotherapy and Maintenance Immunotherapy" :  http://theoncologist.alphamedpress.org/cgi/content/full/14/10/995

                  This study is what convinced me to go the biochemotherapy route as I fit into the group with the best prognostic factors.  I have not seen numbers like this with any other treatment if you fit the profile.  Dr Steven O'Day and Dr. David Minor have beenworking together for quite a while on Biochemotherapy and the latest news is that they will be using Ipi during the immunotherapy maintenance period after 4 cycles of inpatient Biochemotherapy.  The biochemotherapy is provided in the hospital ICU by an experienced team for 4 days every 4th week for 4 sessions.  Yeah, I know the side effects sound yucky, but not much different from IL-2.  They aslo administer the IL-2 on a descrendo basis, ie. 36 miu's day one, 18 miu's day 2, 9 miu's day 3 and 4 to reduce the side effects.  I begin

                  rbruce
                  Participant

                    Since Melanoma is such an individualized disease, the order of promise for treatments varies greatly by individual.  My NRAS mutation represents only about 20% of patients so any of the new developments for Braf + don't apply to me.  The gold standard is still IL-2 for long term durable response and can be as high as 7-10% with the right patient group.  When California Pacific Medical Center in SF reviewed 135 patients that they had treated with Biochemotherapy (chemo + IL2 + Interferon) their numbers looked even better: (taken from their website at: http://www.cpmc.org/services/cancer/melanoma/treatment/ )

                    "Biochemotherapy is an intensive drug treatment regime that combines three chemotherapy drugs, Cisplatin, Velban (Vinblastine), Temodar (Temozolamide), with two active biological agents, interleukin 2 (IL-2) and interferon. Biochemotherapy is used on select patients with metastatic cancer. During biochemotherapy sessions, patients are admitted to the hospital and over four days receive intensive treatment with these five different drugs. This cycle is repeated six times at three-week intervals, after which patients are admitted for two-day treatments once a month for the next one to two years. The treatments can be unpleasant and physically incapacitating, with side effects ranging from nausea and vomiting to systemic inflammatory response, inflaming the patient’s entire body including joints and vital organs.

                    Recent review of 135 patients treated at California Pacific Medical Center with biochemotherapy show a 5 year survival of 25% who are alive and cancer free. This is higher than with chemotherapy alone."

                    ………………………………………………………………………end web article……

                    If you are interested, I urge you to check out the linked study "Prognostic Factors in Metastatic Melanoma Patients Treated with Biochemochemotherapy and Maintenance Immunotherapy" :  http://theoncologist.alphamedpress.org/cgi/content/full/14/10/995

                    This study is what convinced me to go the biochemotherapy route as I fit into the group with the best prognostic factors.  I have not seen numbers like this with any other treatment if you fit the profile.  Dr Steven O'Day and Dr. David Minor have beenworking together for quite a while on Biochemotherapy and the latest news is that they will be using Ipi during the immunotherapy maintenance period after 4 cycles of inpatient Biochemotherapy.  The biochemotherapy is provided in the hospital ICU by an experienced team for 4 days every 4th week for 4 sessions.  Yeah, I know the side effects sound yucky, but not much different from IL-2.  They aslo administer the IL-2 on a descrendo basis, ie. 36 miu's day one, 18 miu's day 2, 9 miu's day 3 and 4 to reduce the side effects.  I begin

                    LynnLuc
                    Participant

                      I think they are all subjective….I think  thoracotomy surgery to remove the lymph nodes was the most beneficial for me thus far ( I did radiation and Temodar before having the surgery)- although I did a  24 week vaccine trial  after surgery and continue to get boosters of anti pd 1 for the next 2 years…I am NED for 14 months ( since surgery). The GM-CSF was offered  after surgery and I declined…My onc at Mayo Clinic in Rochester MN  said I made the right decision for me because it was never shown to prolong life in people who had a spread to the lymph nodes.

                      I think the other immunotherapies all benefit certain people…but most will probably have to try them all…the problem with that is…if you try a certain one and it doesn't work, it might disqualify you from participating in other trials…

                      I have read a lot about IL-2 . It is a very harsh treatment to do and has shown to benefit a tiny population…yet a very large population has gone through it… only to reoccur.- Lynn

                        rbruce
                        Participant

                          My particular gene mutation does not have vaccine trials available, nor is surgery an option. My options were chemo alone,  IL2, IPI, or biochemotherapy. Biochemo with IL2 does have a track record of complete response as high as 28%!!! That's not tiny!  

                          nicoli
                          Participant

                            When I did biochemo with IL2 a few months ago, I was told there is a 14% response rate.

                            Nicki

                            rbruce
                            Participant

                              Response and complete response are 2 different things.  I think you probably mean complete response (over 5 years).  CPMC has reported as high as 28% complete response in their study of 135 patients that had normal ldh.  i posted a link to the study in a previous post.  Even at 14%, that's better than any other stastistics for non operable stage IV. The problem is that different facilities administer the drugs differently and it has been shown that dosage and sequencing can change the outcome dramatically.  The facility and team can have different results as well. The regimen CPMC uses was developed by Dr. Minor and Dr. O'Day and has shown great results.  I start June 6th.  

                              rbruce
                              Participant

                                Response and complete response are 2 different things.  I think you probably mean complete response (over 5 years).  CPMC has reported as high as 28% complete response in their study of 135 patients that had normal ldh.  i posted a link to the study in a previous post.  Even at 14%, that's better than any other stastistics for non operable stage IV. The problem is that different facilities administer the drugs differently and it has been shown that dosage and sequencing can change the outcome dramatically.  The facility and team can have different results as well. The regimen CPMC uses was developed by Dr. Minor and Dr. O'Day and has shown great results.  I start June 6th.  

                                nicoli
                                Participant

                                  When I did biochemo with IL2 a few months ago, I was told there is a 14% response rate.

                                  Nicki

                                  rbruce
                                  Participant

                                    My particular gene mutation does not have vaccine trials available, nor is surgery an option. My options were chemo alone,  IL2, IPI, or biochemotherapy. Biochemo with IL2 does have a track record of complete response as high as 28%!!! That's not tiny!  

                                  LynnLuc
                                  Participant

                                    I think they are all subjective….I think  thoracotomy surgery to remove the lymph nodes was the most beneficial for me thus far ( I did radiation and Temodar before having the surgery)- although I did a  24 week vaccine trial  after surgery and continue to get boosters of anti pd 1 for the next 2 years…I am NED for 14 months ( since surgery). The GM-CSF was offered  after surgery and I declined…My onc at Mayo Clinic in Rochester MN  said I made the right decision for me because it was never shown to prolong life in people who had a spread to the lymph nodes.

                                    I think the other immunotherapies all benefit certain people…but most will probably have to try them all…the problem with that is…if you try a certain one and it doesn't work, it might disqualify you from participating in other trials…

                                    I have read a lot about IL-2 . It is a very harsh treatment to do and has shown to benefit a tiny population…yet a very large population has gone through it… only to reoccur.- Lynn

                                    boot2aboot
                                    Participant

                                      i would have LOVED to try the vaccine before my leukine+(biochemo) but, unfortunately the trials have ended for stage three'ers…but, yes, i agree…neoadjuvant vaccine injection, then surgery, then treatment is the way to go…unfortunately, like me, most of us aren't educated that well in the earliest stages…or savvy enough to know what to look for in trials…timing is everything…but, keep posting…your posts are good and informative…not to mention how fear based we are when we get the diagnosis…i wish i had a 'spock mind' i could turn on and off…

                                       

                                      also, i think they can (if you twist arms) genetically test the tumor sections from pathology slides even though they are out of the body…which would help for targeted ADJUVANT therapy…i just don't 'get' these researchers unless there is a money connection, to stop mel in it's tracks before it goes into places that it clearly doesn't belong in…

                                       

                                      it would be helpful for new people just diagnosed to know EXACTLY the most expediant steps to take…like a Flowchart…yes a flowchart would be helpful

                                      boots

                                      boot2aboot
                                      Participant

                                        i would have LOVED to try the vaccine before my leukine+(biochemo) but, unfortunately the trials have ended for stage three'ers…but, yes, i agree…neoadjuvant vaccine injection, then surgery, then treatment is the way to go…unfortunately, like me, most of us aren't educated that well in the earliest stages…or savvy enough to know what to look for in trials…timing is everything…but, keep posting…your posts are good and informative…not to mention how fear based we are when we get the diagnosis…i wish i had a 'spock mind' i could turn on and off…

                                         

                                        also, i think they can (if you twist arms) genetically test the tumor sections from pathology slides even though they are out of the body…which would help for targeted ADJUVANT therapy…i just don't 'get' these researchers unless there is a money connection, to stop mel in it's tracks before it goes into places that it clearly doesn't belong in…

                                         

                                        it would be helpful for new people just diagnosed to know EXACTLY the most expediant steps to take…like a Flowchart…yes a flowchart would be helpful

                                        boots

                                        FormerCaregiver
                                        Participant

                                          I would like to thank everyone who has contributed to this topic, so far.

                                          While I was reading through your responses, I realised that we really do need to continue
                                          to help each other by sharing information and experiences. The other thing that struck me
                                          was the fact that doctors don't know as much as people (especially new melanoma patients)
                                          assume that they do.

                                          If there is anyone who has any more comments on this thread, please don't hesitate to
                                          voice your opinions. I will try to incorporate any suggestions into an improved "most
                                          promising treatment" list.

                                          Best wishes

                                          Frank from Australia

                                          FormerCaregiver
                                          Participant

                                            I would like to thank everyone who has contributed to this topic, so far.

                                            While I was reading through your responses, I realised that we really do need to continue
                                            to help each other by sharing information and experiences. The other thing that struck me
                                            was the fact that doctors don't know as much as people (especially new melanoma patients)
                                            assume that they do.

                                            If there is anyone who has any more comments on this thread, please don't hesitate to
                                            voice your opinions. I will try to incorporate any suggestions into an improved "most
                                            promising treatment" list.

                                            Best wishes

                                            Frank from Australia

                                        Viewing 9 reply threads
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