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Temodar experiences

Forums General Melanoma Community Temodar experiences

  • Post
    hannahcopeland1
    Participant

      Has anyone taken the chemo temodar? I am specifically taking it via infusion for 5 days ( but I kno you can also take it orally) with a regular dose of ipi and 10 days of full brain radiation. Apparently temodar can get to the brain so they decided to add it to my treatment because of my situation. 

      Recently they found leptomeningeal disease in my brain, so basically there is melanoma in the tissue surrounding and protecting my brain and spinal chord.hasnt gotten to the spinal fluid yet which is good, but they did find two small lesions on the bone of my lower lumbar spine ๐Ÿ™ it's pretty darn serious and I was kicked out of the PD-1 trial I was to start the next week.

      So plan B is just trying to be aggressive, hense my agreement to do chemo. I thought I'd be able to skip that stuff, but you can't always get what you want. I've done 4 out on5 infusions so far and haven't noticed many changes, but I kno that side effects often take time to kick in.

      i really dontknow what to expect and am not knowledgeable about chemo (temodar especially) and how to take care of myself while on it. My doctors have not been very informative on the subjuct. When they handed me a mask the other day just to walk outside I was very surprised and when I got to see my 2 year old niece 6felt scared to touch or to hold her.

      will I lose my hair? When?

      i feel ignorant, which I try to avoid when it comes to my health.

      Anyone experienced this particular drug and want share some knowledge with me?

      .

      Thanks for listening

      H

    Viewing 20 reply threads
    • Replies
        Mat
        Participant

          Hannah, sorry to hear about your situation.  I can't answer your question, but in terms of options–do a search for leptomeningeal disease in this forum.  Within the past few months there has been discussion on this.  Apparently, there is a doctor at MD Anderson who specializes in treating leptomeningeal disease–some sort of specialized IL-2 treatment.

          Mat
          Participant

            Hannah, sorry to hear about your situation.  I can't answer your question, but in terms of options–do a search for leptomeningeal disease in this forum.  Within the past few months there has been discussion on this.  Apparently, there is a doctor at MD Anderson who specializes in treating leptomeningeal disease–some sort of specialized IL-2 treatment.

            Mat
            Participant

              Hannah, sorry to hear about your situation.  I can't answer your question, but in terms of options–do a search for leptomeningeal disease in this forum.  Within the past few months there has been discussion on this.  Apparently, there is a doctor at MD Anderson who specializes in treating leptomeningeal disease–some sort of specialized IL-2 treatment.

              joy_
              Participant

                Hannah,

                I cannot answer your question in regards to temodar, but my husband has leptomeningeal disease too.  He is being treated at MD Anderson by Dr. Papa with intrathecal IL2.

                He is the only doctor in the world who does this treatment.  My husband was given the option of WBR at his previous treatment center, and we were told it was only palliative so we headed straight for MDA.  It is a ROUGH treatment but it has a pretty good success rate & Dr Papa has patients as many as 20 years out with this treatment.  If you want more info please let me know!

                  joy_
                  Participant

                    Just wanted to add that you have to act FAST though!

                    joy_
                    Participant

                      Just wanted to add that you have to act FAST though!

                      joy_
                      Participant

                        Just wanted to add that you have to act FAST though!

                      joy_
                      Participant

                        Hannah,

                        I cannot answer your question in regards to temodar, but my husband has leptomeningeal disease too.  He is being treated at MD Anderson by Dr. Papa with intrathecal IL2.

                        He is the only doctor in the world who does this treatment.  My husband was given the option of WBR at his previous treatment center, and we were told it was only palliative so we headed straight for MDA.  It is a ROUGH treatment but it has a pretty good success rate & Dr Papa has patients as many as 20 years out with this treatment.  If you want more info please let me know!

                        joy_
                        Participant

                          Hannah,

                          I cannot answer your question in regards to temodar, but my husband has leptomeningeal disease too.  He is being treated at MD Anderson by Dr. Papa with intrathecal IL2.

                          He is the only doctor in the world who does this treatment.  My husband was given the option of WBR at his previous treatment center, and we were told it was only palliative so we headed straight for MDA.  It is a ROUGH treatment but it has a pretty good success rate & Dr Papa has patients as many as 20 years out with this treatment.  If you want more info please let me know!

                          POW
                          Participant

                            Oh, Hannah, I am so sorry to hear this! I can't answer your questions about temodar because my brother was too debilitated to take it when it was offered. 

                            However, as others here have said, Dr. Nicholas Papadopoulos at MD Anderson is the one person who seems to have considerable experience and some success treating leptomenengial melanoma. Lepto is very aggressive, however, so you should contact Dr. Papas ASAP Phone (713) 792-2121.

                            Aldakota was the last person here to deal with lepto. Here is the thread where people talked about Dr. Papas and MD Anderson. http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/update-aldakota22

                            POW
                            Participant

                              Oh, Hannah, I am so sorry to hear this! I can't answer your questions about temodar because my brother was too debilitated to take it when it was offered. 

                              However, as others here have said, Dr. Nicholas Papadopoulos at MD Anderson is the one person who seems to have considerable experience and some success treating leptomenengial melanoma. Lepto is very aggressive, however, so you should contact Dr. Papas ASAP Phone (713) 792-2121.

                              Aldakota was the last person here to deal with lepto. Here is the thread where people talked about Dr. Papas and MD Anderson. http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/update-aldakota22

                                Cooper
                                Participant

                                  The direct IL2 experience only prolonged life for someone dear to me for a very short time.  It wasn't worth the grueling experience of it.   Temodar is dacarbazine and not known to do a lot sadly.   Best bet is to move onto PD1 access if you can.  Boosting your immune system is top priority!~!

                                  Cooper
                                  Participant

                                    The direct IL2 experience only prolonged life for someone dear to me for a very short time.  It wasn't worth the grueling experience of it.   Temodar is dacarbazine and not known to do a lot sadly.   Best bet is to move onto PD1 access if you can.  Boosting your immune system is top priority!~!

                                    Cooper
                                    Participant

                                      I would go for braf/mek drugs if you can, they have shown to work on the brain.  IL2 and temodar are really old drugs.

                                      Cooper
                                      Participant

                                        I would go for braf/mek drugs if you can, they have shown to work on the brain.  IL2 and temodar are really old drugs.

                                        Cooper
                                        Participant

                                          I would go for braf/mek drugs if you can, they have shown to work on the brain.  IL2 and temodar are really old drugs.

                                          joy_
                                          Participant

                                            Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

                                            Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

                                            joy_
                                            Participant

                                              Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

                                              Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

                                              joy_
                                              Participant

                                                Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

                                                joy_
                                                Participant

                                                  Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

                                                  POW
                                                  Participant

                                                    Joy, I am delighted to hear that your husband is responding to intrathecal IL-2 treatment! I will pray that he continues to improve and that he finds a treatment to shrink the other mets in his body. Melanoma warriors definitely have options you didn't have 3 or 4 years ago.

                                                    POW
                                                    Participant

                                                      Joy, I am delighted to hear that your husband is responding to intrathecal IL-2 treatment! I will pray that he continues to improve and that he finds a treatment to shrink the other mets in his body. Melanoma warriors definitely have options you didn't have 3 or 4 years ago.

                                                      POW
                                                      Participant

                                                        Joy, I am delighted to hear that your husband is responding to intrathecal IL-2 treatment! I will pray that he continues to improve and that he finds a treatment to shrink the other mets in his body. Melanoma warriors definitely have options you didn't have 3 or 4 years ago.

                                                        joy_
                                                        Participant

                                                          Meant to add that intrathecal IL2 is not the same treatment as systemic IL2.  Same drug but an off label use where it is administered via ommaya reservoir directly into CSF.

                                                          joy_
                                                          Participant

                                                            Intrathecal IL2 is definitely not for everyone, but I can say it is saving my husband from leptomeningeal disease.  Disease in the body and brain mets are now the obstacle for him. It is a tough treatment but if you are otherwise healthy and young and asymptomatic that is a big plus.

                                                            Dabrafenib is thought to have some effect on the brain, but I don't think will help when you are in the lepto camp.

                                                            Cooper
                                                            Participant

                                                              The direct IL2 experience only prolonged life for someone dear to me for a very short time.  It wasn't worth the grueling experience of it.   Temodar is dacarbazine and not known to do a lot sadly.   Best bet is to move onto PD1 access if you can.  Boosting your immune system is top priority!~!

                                                            POW
                                                            Participant

                                                              Oh, Hannah, I am so sorry to hear this! I can't answer your questions about temodar because my brother was too debilitated to take it when it was offered. 

                                                              However, as others here have said, Dr. Nicholas Papadopoulos at MD Anderson is the one person who seems to have considerable experience and some success treating leptomenengial melanoma. Lepto is very aggressive, however, so you should contact Dr. Papas ASAP Phone (713) 792-2121.

                                                              Aldakota was the last person here to deal with lepto. Here is the thread where people talked about Dr. Papas and MD Anderson. http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/update-aldakota22

                                                              BrianP
                                                              Participant

                                                                Hannah,

                                                                So sorry what you are going through right now.  Prayers coming your way.  Looks like there's been some great info posted above.  Hope you are able to take advantage of some of it.

                                                                Brian

                                                                BrianP
                                                                Participant

                                                                  Hannah,

                                                                  So sorry what you are going through right now.  Prayers coming your way.  Looks like there's been some great info posted above.  Hope you are able to take advantage of some of it.

                                                                  Brian

                                                                    Cooper
                                                                    Participant

                                                                      I think Hannah was asking about Temodar and no one responded about it.  It is nothing but a form of dacarbazine that has a low response rate.  I find it disturbing that some of you are pushing her to rush to MDA for an unproven, highly toxic drug regimen. Does anyone remember what Amy went through witht that here? One person responding in one place in their body doesn't prove anything.  So answer the question instead of pushing her somewhere else.

                                                                      Janner
                                                                      Participant

                                                                        Amy responded to the intrathecal il-2, but succumbed to other disease.

                                                                        JerryfromFauq
                                                                        Participant

                                                                          Amy Busby had her LEPT0 cleared up for the last 6 months of her life.  She died because, in spite of being promised re-entry to the BRAF trial if she could get the Lepto cleared, BMS refused to honor their word and let her die from the re-growth of the other internal tumors that were almost removed by the BRAF treatment before BMS said she had to stop the BRAF if she got the intrathecal il-2.  They did promise her re-entry if the lepto was cleared for 2 months.  They failed to keep their word to her and Dr Pappa.  I forwarded all the data from my extensive contacts with Amy to Snickers.   Her husband is started on it last year and is now even her caretaker while she is having other medical problems at present.

                                                                           

                                                                          JerryfromFauq
                                                                          Participant

                                                                            Amy Busby had her LEPT0 cleared up for the last 6 months of her life.  She died because, in spite of being promised re-entry to the BRAF trial if she could get the Lepto cleared, BMS refused to honor their word and let her die from the re-growth of the other internal tumors that were almost removed by the BRAF treatment before BMS said she had to stop the BRAF if she got the intrathecal il-2.  They did promise her re-entry if the lepto was cleared for 2 months.  They failed to keep their word to her and Dr Pappa.  I forwarded all the data from my extensive contacts with Amy to Snickers.   Her husband is started on it last year and is now even her caretaker while she is having other medical problems at present.

                                                                             

                                                                            JerryfromFauq
                                                                            Participant

                                                                              Amy Busby had her LEPT0 cleared up for the last 6 months of her life.  She died because, in spite of being promised re-entry to the BRAF trial if she could get the Lepto cleared, BMS refused to honor their word and let her die from the re-growth of the other internal tumors that were almost removed by the BRAF treatment before BMS said she had to stop the BRAF if she got the intrathecal il-2.  They did promise her re-entry if the lepto was cleared for 2 months.  They failed to keep their word to her and Dr Pappa.  I forwarded all the data from my extensive contacts with Amy to Snickers.   Her husband is started on it last year and is now even her caretaker while she is having other medical problems at present.

                                                                               

                                                                              Janner
                                                                              Participant

                                                                                Amy responded to the intrathecal il-2, but succumbed to other disease.

                                                                                Janner
                                                                                Participant

                                                                                  Amy responded to the intrathecal il-2, but succumbed to other disease.

                                                                                  hannahcopeland1
                                                                                  Participant

                                                                                    Thank you. You hit the nail on the head

                                                                                    Cooper
                                                                                    Participant

                                                                                      And there is absolutely no proof that the MDA approach of IL2 going into the brain is curative, no studies, no nothing.  So it is just as well proven that other less toxic methods are feasible.  But you are not experts here to push someone to something as you have been. You don't know her situation at all and again she asked about temodar NOT IL2 shot into the brain.

                                                                                      Cooper
                                                                                      Participant

                                                                                        And there is absolutely no proof that the MDA approach of IL2 going into the brain is curative, no studies, no nothing.  So it is just as well proven that other less toxic methods are feasible.  But you are not experts here to push someone to something as you have been. You don't know her situation at all and again she asked about temodar NOT IL2 shot into the brain.

                                                                                        Cooper
                                                                                        Participant

                                                                                          And there is absolutely no proof that the MDA approach of IL2 going into the brain is curative, no studies, no nothing.  So it is just as well proven that other less toxic methods are feasible.  But you are not experts here to push someone to something as you have been. You don't know her situation at all and again she asked about temodar NOT IL2 shot into the brain.

                                                                                          Cooper
                                                                                          Participant

                                                                                            Yeah when folks push this hard for one treatment and doctor and in one place, makes you wonder who wrote the post!

                                                                                            BrianP
                                                                                            Participant

                                                                                              I find your post a little ironic based on the statement and the fact you signed it anonymously.

                                                                                              Hanah,

                                                                                              I hope you don't think people are being too pushy.  I think this community just really cares for one another and they are concerned for you.  I also hope those concerns haven't increased your stress level.  Everyone on this site offers advice based on their knowledge and experience.  I think there's few if any here that are doctors and therefore qualified to give medical advice but the information I've received here has been invaluable over the last few years.  When I post something I always hope that people give me as much information, good or bad, as they have and then it's up to me to take that information and do my due diligence.  Hopefully you can do the same with the info presented on this thread so far.

                                                                                              I will say that nearly everyone that posted advice for Hanah posted using their username and nearly everyone that had issue with that advice posted anonymously.  I think that is unfortunate because it often leads to less civility in the post.

                                                                                              I wish you well Hanah and will have you in my prayers as you find a suitable treatment plan.

                                                                                              Brian

                                                                                              BrianP
                                                                                              Participant

                                                                                                I find your post a little ironic based on the statement and the fact you signed it anonymously.

                                                                                                Hanah,

                                                                                                I hope you don't think people are being too pushy.  I think this community just really cares for one another and they are concerned for you.  I also hope those concerns haven't increased your stress level.  Everyone on this site offers advice based on their knowledge and experience.  I think there's few if any here that are doctors and therefore qualified to give medical advice but the information I've received here has been invaluable over the last few years.  When I post something I always hope that people give me as much information, good or bad, as they have and then it's up to me to take that information and do my due diligence.  Hopefully you can do the same with the info presented on this thread so far.

                                                                                                I will say that nearly everyone that posted advice for Hanah posted using their username and nearly everyone that had issue with that advice posted anonymously.  I think that is unfortunate because it often leads to less civility in the post.

                                                                                                I wish you well Hanah and will have you in my prayers as you find a suitable treatment plan.

                                                                                                Brian

                                                                                                Mat
                                                                                                Participant

                                                                                                  Brian, well said–and I admire your restraint.

                                                                                                  Mat
                                                                                                  Participant

                                                                                                    Brian, well said–and I admire your restraint.

                                                                                                    Mat
                                                                                                    Participant

                                                                                                      Brian, well said–and I admire your restraint.

                                                                                                      joy_
                                                                                                      Participant

                                                                                                        Thank you for this post, Brian.  I could not agree with you more.

                                                                                                        My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  ๐Ÿ˜‰

                                                                                                        I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

                                                                                                        And Hannah, I sincerely wish you the very best in your journey.  God bless you.

                                                                                                        joy

                                                                                                        joy_
                                                                                                        Participant

                                                                                                          Thank you for this post, Brian.  I could not agree with you more.

                                                                                                          My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  ๐Ÿ˜‰

                                                                                                          I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

                                                                                                          And Hannah, I sincerely wish you the very best in your journey.  God bless you.

                                                                                                          joy

                                                                                                          joy_
                                                                                                          Participant

                                                                                                            Thank you for this post, Brian.  I could not agree with you more.

                                                                                                            My intention in sharing my husband experience was only to share information.  I don't appreciate accusations by others here that I am "pushing" something.  Treatment decisions are very personal, and I have found this forum a valuable source of information and experiences.  When anonymous posters try to "silence" regular folks from sharing personal experiences that's when you have to be suspicious.  ๐Ÿ˜‰

                                                                                                            I sincerely hope that others with Temador experience will chime in for Hannah and answer her question.

                                                                                                            And Hannah, I sincerely wish you the very best in your journey.  God bless you.

                                                                                                            joy

                                                                                                            BrianP
                                                                                                            Participant

                                                                                                              I find your post a little ironic based on the statement and the fact you signed it anonymously.

                                                                                                              Hanah,

                                                                                                              I hope you don't think people are being too pushy.  I think this community just really cares for one another and they are concerned for you.  I also hope those concerns haven't increased your stress level.  Everyone on this site offers advice based on their knowledge and experience.  I think there's few if any here that are doctors and therefore qualified to give medical advice but the information I've received here has been invaluable over the last few years.  When I post something I always hope that people give me as much information, good or bad, as they have and then it's up to me to take that information and do my due diligence.  Hopefully you can do the same with the info presented on this thread so far.

                                                                                                              I will say that nearly everyone that posted advice for Hanah posted using their username and nearly everyone that had issue with that advice posted anonymously.  I think that is unfortunate because it often leads to less civility in the post.

                                                                                                              I wish you well Hanah and will have you in my prayers as you find a suitable treatment plan.

                                                                                                              Brian

                                                                                                              Cooper
                                                                                                              Participant

                                                                                                                Yeah when folks push this hard for one treatment and doctor and in one place, makes you wonder who wrote the post!

                                                                                                                Cooper
                                                                                                                Participant

                                                                                                                  Yeah when folks push this hard for one treatment and doctor and in one place, makes you wonder who wrote the post!

                                                                                                                  hannahcopeland1
                                                                                                                  Participant

                                                                                                                    Thank you. You hit the nail on the head

                                                                                                                    hannahcopeland1
                                                                                                                    Participant

                                                                                                                      Thank you. You hit the nail on the head

                                                                                                                      Cooper
                                                                                                                      Participant

                                                                                                                        I think Hannah was asking about Temodar and no one responded about it.  It is nothing but a form of dacarbazine that has a low response rate.  I find it disturbing that some of you are pushing her to rush to MDA for an unproven, highly toxic drug regimen. Does anyone remember what Amy went through witht that here? One person responding in one place in their body doesn't prove anything.  So answer the question instead of pushing her somewhere else.

                                                                                                                        Cooper
                                                                                                                        Participant

                                                                                                                          I think Hannah was asking about Temodar and no one responded about it.  It is nothing but a form of dacarbazine that has a low response rate.  I find it disturbing that some of you are pushing her to rush to MDA for an unproven, highly toxic drug regimen. Does anyone remember what Amy went through witht that here? One person responding in one place in their body doesn't prove anything.  So answer the question instead of pushing her somewhere else.

                                                                                                                        BrianP
                                                                                                                        Participant

                                                                                                                          Hannah,

                                                                                                                          So sorry what you are going through right now.  Prayers coming your way.  Looks like there's been some great info posted above.  Hope you are able to take advantage of some of it.

                                                                                                                          Brian

                                                                                                                          paul
                                                                                                                          Participant

                                                                                                                            Hi Hannah,

                                                                                                                            I took Temodar for a year. Minimal side-effects and some benefit. It helps as many people (@10%) as DTIC with fewer effects.

                                                                                                                            Good wishes to you.

                                                                                                                            Paul

                                                                                                                             

                                                                                                                             

                                                                                                                             

                                                                                                                             

                                                                                                                             

                                                                                                                             

                                                                                                                             

                                                                                                                             

                                                                                                                             

                                                                                                                            paul
                                                                                                                            Participant

                                                                                                                              Hi Hannah,

                                                                                                                              I took Temodar for a year. Minimal side-effects and some benefit. It helps as many people (@10%) as DTIC with fewer effects.

                                                                                                                              Good wishes to you.

                                                                                                                              Paul

                                                                                                                               

                                                                                                                               

                                                                                                                               

                                                                                                                               

                                                                                                                               

                                                                                                                               

                                                                                                                               

                                                                                                                               

                                                                                                                               

                                                                                                                              paul
                                                                                                                              Participant

                                                                                                                                Hi Hannah,

                                                                                                                                I took Temodar for a year. Minimal side-effects and some benefit. It helps as many people (@10%) as DTIC with fewer effects.

                                                                                                                                Good wishes to you.

                                                                                                                                Paul

                                                                                                                                 

                                                                                                                                 

                                                                                                                                 

                                                                                                                                 

                                                                                                                                 

                                                                                                                                 

                                                                                                                                 

                                                                                                                                 

                                                                                                                                 

                                                                                                                                  Cooper
                                                                                                                                  Participant

                                                                                                                                    Brian,

                                                                                                                                     As if the user names are really their names?   I disagree that the intent was well intentioned but instead very pushy for someone in a very scary situation.  Suggesting she pull up stakes and rush to an unproven procedure far from home is not helpful. She asked about temodar and ended up with a lot more she didn't need.  

                                                                                                                                    Cooper
                                                                                                                                    Participant

                                                                                                                                      Brian,

                                                                                                                                       As if the user names are really their names?   I disagree that the intent was well intentioned but instead very pushy for someone in a very scary situation.  Suggesting she pull up stakes and rush to an unproven procedure far from home is not helpful. She asked about temodar and ended up with a lot more she didn't need.  

                                                                                                                                      Cooper
                                                                                                                                      Participant

                                                                                                                                        Brian,

                                                                                                                                         As if the user names are really their names?   I disagree that the intent was well intentioned but instead very pushy for someone in a very scary situation.  Suggesting she pull up stakes and rush to an unproven procedure far from home is not helpful. She asked about temodar and ended up with a lot more she didn't need.  

                                                                                                                                      JerryfromFauq
                                                                                                                                      Participant

                                                                                                                                        I have not heard reports as to the effects of Temodar on LEPTO,  IN GENERAL, Temodar is considered more pallative than actually curative in MOST melanoma cases.  It has worked for a few.

                                                                                                                                              Some people are too fearful of HD IL-2 short term side effects and many Doctors have not learned how to administer it.  It must be administered by anhhighly experienced IL-2 Oncologist with a highly experienced staff.   While it is an older treatment, that alone should not remove it from the options.  LEARN about all the options and who has experience with each.

                                                                                                                                             Some of us are still alive due to the HD IL-2.  I am. I was give 30-180 days in 2007, before I tasked where I could get the IL-2.   I know others that after being a complete responder to HD IL-2 for over 30 months have remained clear of melanoma for over 20 years.  I know of no one that has been a complete responder to HD IL-2 for over 30 months and ever had a re-occurance.

                                                                                                                                             The death rate from PD-1 in current clinical trials has been about the same as from the HD IL-2 clinical trials 20-30 years ago.  PD-1 so far may have longer term negatives side effects than IL-2.  So far there has been at least a short term, higher positive success rate with PD-1 than any other trial treatment.  It is hoped that one day it will have a cure longivity that approaches that of IL-2. 

                                                                                                                                        Brian made many good points in his post above.

                                                                                                                                        JerryfromFauq
                                                                                                                                        Participant

                                                                                                                                          I have not heard reports as to the effects of Temodar on LEPTO,  IN GENERAL, Temodar is considered more pallative than actually curative in MOST melanoma cases.  It has worked for a few.

                                                                                                                                                Some people are too fearful of HD IL-2 short term side effects and many Doctors have not learned how to administer it.  It must be administered by anhhighly experienced IL-2 Oncologist with a highly experienced staff.   While it is an older treatment, that alone should not remove it from the options.  LEARN about all the options and who has experience with each.

                                                                                                                                               Some of us are still alive due to the HD IL-2.  I am. I was give 30-180 days in 2007, before I tasked where I could get the IL-2.   I know others that after being a complete responder to HD IL-2 for over 30 months have remained clear of melanoma for over 20 years.  I know of no one that has been a complete responder to HD IL-2 for over 30 months and ever had a re-occurance.

                                                                                                                                               The death rate from PD-1 in current clinical trials has been about the same as from the HD IL-2 clinical trials 20-30 years ago.  PD-1 so far may have longer term negatives side effects than IL-2.  So far there has been at least a short term, higher positive success rate with PD-1 than any other trial treatment.  It is hoped that one day it will have a cure longivity that approaches that of IL-2. 

                                                                                                                                          Brian made many good points in his post above.

                                                                                                                                          JerryfromFauq
                                                                                                                                          Participant

                                                                                                                                            I have not heard reports as to the effects of Temodar on LEPTO,  IN GENERAL, Temodar is considered more pallative than actually curative in MOST melanoma cases.  It has worked for a few.

                                                                                                                                                  Some people are too fearful of HD IL-2 short term side effects and many Doctors have not learned how to administer it.  It must be administered by anhhighly experienced IL-2 Oncologist with a highly experienced staff.   While it is an older treatment, that alone should not remove it from the options.  LEARN about all the options and who has experience with each.

                                                                                                                                                 Some of us are still alive due to the HD IL-2.  I am. I was give 30-180 days in 2007, before I tasked where I could get the IL-2.   I know others that after being a complete responder to HD IL-2 for over 30 months have remained clear of melanoma for over 20 years.  I know of no one that has been a complete responder to HD IL-2 for over 30 months and ever had a re-occurance.

                                                                                                                                                 The death rate from PD-1 in current clinical trials has been about the same as from the HD IL-2 clinical trials 20-30 years ago.  PD-1 so far may have longer term negatives side effects than IL-2.  So far there has been at least a short term, higher positive success rate with PD-1 than any other trial treatment.  It is hoped that one day it will have a cure longivity that approaches that of IL-2. 

                                                                                                                                            Brian made many good points in his post above.

                                                                                                                                              Cooper
                                                                                                                                              Participant

                                                                                                                                                Jerry, would love to see where you read that PD1 had same death rate as HD IL2 20 years plus ago.  That whole paragraph didn't make sense.  IL2 is very old and 94% of patients DON'T respond to it.  Having it poured into your brain has not been shown to work in any trial.  So again, folks shouldn't force their opinions without lots of evidence.

                                                                                                                                                Cooper
                                                                                                                                                Participant

                                                                                                                                                  Jerry, would love to see where you read that PD1 had same death rate as HD IL2 20 years plus ago.  That whole paragraph didn't make sense.  IL2 is very old and 94% of patients DON'T respond to it.  Having it poured into your brain has not been shown to work in any trial.  So again, folks shouldn't force their opinions without lots of evidence.

                                                                                                                                                  Cooper
                                                                                                                                                  Participant

                                                                                                                                                    Jerry, would love to see where you read that PD1 had same death rate as HD IL2 20 years plus ago.  That whole paragraph didn't make sense.  IL2 is very old and 94% of patients DON'T respond to it.  Having it poured into your brain has not been shown to work in any trial.  So again, folks shouldn't force their opinions without lots of evidence.

                                                                                                                                                    JerryfromFauq
                                                                                                                                                    Participant

                                                                                                                                                      Got the Death Rates from reading the IL-2 and PD-1 clinical trial reports.  20 to 23% of across the board melanoma patients did have a POSITIVE response to IL-2 in the majority of studies.  The lowest response rate I have seen in any study is 16%.  I and the others have not tried to force anyone into any treatment.  We have only told what our and our friends experiences have been.   We believe that people should know of all options and not be scared off by people that were not elgible for treatments they wanted, but were not elgible for, and so try to prevent others from learning ALL the options that are available.  Don't know what your problem with Dr. Pappa is, but many people are still alive due to having him as their Oncologist. 

                                                                                                                                                         We are not afraid to say who we are  and what our opinmions are,  I do not know where you pull your numbers from but have not seen them in any Peer Reviewed Journal articles.

                                                                                                                                                       

                                                                                                                                                      JerryfromFauq
                                                                                                                                                      Participant

                                                                                                                                                        Got the Death Rates from reading the IL-2 and PD-1 clinical trial reports.  20 to 23% of across the board melanoma patients did have a POSITIVE response to IL-2 in the majority of studies.  The lowest response rate I have seen in any study is 16%.  I and the others have not tried to force anyone into any treatment.  We have only told what our and our friends experiences have been.   We believe that people should know of all options and not be scared off by people that were not elgible for treatments they wanted, but were not elgible for, and so try to prevent others from learning ALL the options that are available.  Don't know what your problem with Dr. Pappa is, but many people are still alive due to having him as their Oncologist. 

                                                                                                                                                           We are not afraid to say who we are  and what our opinmions are,  I do not know where you pull your numbers from but have not seen them in any Peer Reviewed Journal articles.

                                                                                                                                                         

                                                                                                                                                        JerryfromFauq
                                                                                                                                                        Participant

                                                                                                                                                          Got the Death Rates from reading the IL-2 and PD-1 clinical trial reports.  20 to 23% of across the board melanoma patients did have a POSITIVE response to IL-2 in the majority of studies.  The lowest response rate I have seen in any study is 16%.  I and the others have not tried to force anyone into any treatment.  We have only told what our and our friends experiences have been.   We believe that people should know of all options and not be scared off by people that were not elgible for treatments they wanted, but were not elgible for, and so try to prevent others from learning ALL the options that are available.  Don't know what your problem with Dr. Pappa is, but many people are still alive due to having him as their Oncologist. 

                                                                                                                                                             We are not afraid to say who we are  and what our opinmions are,  I do not know where you pull your numbers from but have not seen them in any Peer Reviewed Journal articles.

                                                                                                                                                           

                                                                                                                                                          virginia washburn
                                                                                                                                                          Participant

                                                                                                                                                            OK people, why all the criticism of each other? This is suppose to be SUPPORT!! 

                                                                                                                                                            Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.

                                                                                                                                                            If you are BRAF/MEK POSITIVE, you have a few more treatment options.

                                                                                                                                                            There is no clear, concise evidence that PD-1 is effective on Brain mets.

                                                                                                                                                            My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi. 

                                                                                                                                                            We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!

                                                                                                                                                             

                                                                                                                                                            Keep praying for a miracle, for the doctors to find a CURE for this awful disease.

                                                                                                                                                            Best of luck to everyone. Prayers.

                                                                                                                                                            virginia washburn
                                                                                                                                                            Participant

                                                                                                                                                              OK people, why all the criticism of each other? This is suppose to be SUPPORT!! 

                                                                                                                                                              Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.

                                                                                                                                                              If you are BRAF/MEK POSITIVE, you have a few more treatment options.

                                                                                                                                                              There is no clear, concise evidence that PD-1 is effective on Brain mets.

                                                                                                                                                              My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi. 

                                                                                                                                                              We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!

                                                                                                                                                               

                                                                                                                                                              Keep praying for a miracle, for the doctors to find a CURE for this awful disease.

                                                                                                                                                              Best of luck to everyone. Prayers.

                                                                                                                                                              virginia washburn
                                                                                                                                                              Participant

                                                                                                                                                                OK people, why all the criticism of each other? This is suppose to be SUPPORT!! 

                                                                                                                                                                Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.

                                                                                                                                                                If you are BRAF/MEK POSITIVE, you have a few more treatment options.

                                                                                                                                                                There is no clear, concise evidence that PD-1 is effective on Brain mets.

                                                                                                                                                                My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi. 

                                                                                                                                                                We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!

                                                                                                                                                                 

                                                                                                                                                                Keep praying for a miracle, for the doctors to find a CURE for this awful disease.

                                                                                                                                                                Best of luck to everyone. Prayers.

                                                                                                                                                              JerryfromFauq
                                                                                                                                                              Participant

                                                                                                                                                                On Temodar

                                                                                                                                                                 

                                                                                                                                                                JerryfromFauq
                                                                                                                                                                Participant

                                                                                                                                                                  On Temodar

                                                                                                                                                                   

                                                                                                                                                                  JerryfromFauq
                                                                                                                                                                  Participant

                                                                                                                                                                    On Temodar

                                                                                                                                                                     

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                                                                                                                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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