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Leukine

Forums General Melanoma Community Leukine

  • Post
    AnnG
    Participant

      In August I was diagnosed with an unknown primary with a metastatic site on the shoulder. Pet, MRI, ultrasound of eye, revealed no other measurable disease. The dye to identiy the sentinel node was not successful so the surgeon was not able to remove for further testing. The Mel on my shoulder was deep but all removed with clear margins. I lasted two weeks on full dosage on intravenous Interferon and then two weeks on 50%. Gave myself the shots for close to 2 months. A follow up Petscan last month revealed a spot under my arm. I am recovering from a Lymphadenectomy and the path report concluded one node Mel and the other thirteen clear and encapsulated.

      My oncologist is recommending Leukine and ct scans every 3 months or just the ct scans. When we went for a second opinion after the initial diagnosis and surgery, a specialist at University of Pittsburgh told us that Leukine is not effective. 

      Does anyone have experience with Leukine? 

      Which Mel Center in the US sees the most patients? Though we live in upstate NY I will travel anywhere to see a top Mel Oncologist who is up on the newest treatments and screening techniques.

      Thank you

      Ann

    Viewing 11 reply threads
    • Replies
        kylez
        Participant

          Ann,

          Since i've never had GM-CSF nor am a participant in that trial, I risk of putting my foot in my mouth saying much of anything about it.

          That said, FWIW, I recently heard Dr. Jeff Weber (Moffitt Cancer Ctr) speak at an MRF seminar. He brought up the T-VEC trial which he said is promising. T-VEC is a virus expressing GM-CSF that is injected directly into the tumor. By comparision, however, he said he hasn't seen GM-CSF aka Leukine on its own do much. The clinical trial involved (which has Moffitt as a site) is NCT00769704.

          It's a great idea to look for a melanoma center up on the latest treatments. Memorial Sloan Kettering in NY is certainly a big Mel center (7 melanoma oncologists listed, Dr. Wolchok is nationally known for sure).

          Good luck,

          Kyle

          kylez
          Participant

            Ann,

            Since i've never had GM-CSF nor am a participant in that trial, I risk of putting my foot in my mouth saying much of anything about it.

            That said, FWIW, I recently heard Dr. Jeff Weber (Moffitt Cancer Ctr) speak at an MRF seminar. He brought up the T-VEC trial which he said is promising. T-VEC is a virus expressing GM-CSF that is injected directly into the tumor. By comparision, however, he said he hasn't seen GM-CSF aka Leukine on its own do much. The clinical trial involved (which has Moffitt as a site) is NCT00769704.

            It's a great idea to look for a melanoma center up on the latest treatments. Memorial Sloan Kettering in NY is certainly a big Mel center (7 melanoma oncologists listed, Dr. Wolchok is nationally known for sure).

            Good luck,

            Kyle

            kylez
            Participant

              Ann,

              Since i've never had GM-CSF nor am a participant in that trial, I risk of putting my foot in my mouth saying much of anything about it.

              That said, FWIW, I recently heard Dr. Jeff Weber (Moffitt Cancer Ctr) speak at an MRF seminar. He brought up the T-VEC trial which he said is promising. T-VEC is a virus expressing GM-CSF that is injected directly into the tumor. By comparision, however, he said he hasn't seen GM-CSF aka Leukine on its own do much. The clinical trial involved (which has Moffitt as a site) is NCT00769704.

              It's a great idea to look for a melanoma center up on the latest treatments. Memorial Sloan Kettering in NY is certainly a big Mel center (7 melanoma oncologists listed, Dr. Wolchok is nationally known for sure).

              Good luck,

              Kyle

              POW
              Participant

                I have heard the same thing that Kyle heard– Leukine (trade name for GM-CSF) was FDA approved 20 years ago for certain purposes. It has been tested as a vaccine treatment for melanoma but although some patients did benefit, most did not. This new formulation being delivered by a virus might be successful. We don't know yet. 

                Since you are now considered Stage IV NED (no evidence of disease), you would probably be elegible for ipi (trade name Yervoy) which was FDA approved 2 years ago. I don't know if your NED status would be a problem for that. Other than that, there are a number of promising new treatments now in clinical trials. Again, most clinical trials want you to have at least one tumor so that they can test it via a biopsy and so that they can track whether their treatment is working. If you would like to investigate clinical trials, let us know and we will try to help you find information.

                The best idea is for you to go to a melanoma specialty clinic– the specialists there are usually "up" on most of the local clinical trials. Memorial Sloan Kettering is well-regarded, as is NYU Langone Medical Center. There are several excellent melanoma centers in the Boston area, too. Farther from your home, Moffitt in Tampa and MD Anderson in Houston are highly rated as are probably half a dozen others in various states. 

                Before you spend much time looking for clinical trials, it would probably be a good idea to have your tumor tissue tested for the BRAF, c-KIT and NRAS mutations if that hasn't been done yet. Many clinical trials are limited to people having one or another of such genetic factors. 

                Good luck, and please do keep us posted as to how things are going with you.

                 

                  AnnG
                  Participant

                    Thank you for your advice,

                    I have requested that the tumor tissue be tested for the BRAF,  c-KIT and NRAS.  Is this not standard procedure?

                    Searching for investigative trials is challenging–most require something to measure-which fortunately I am NED. I am going to look into some new technologies that test the blood for microscopic cells. 

                    I live in western NY but want to go to a top Melanoma Center where the Drs have seen unusual presenations such as mine. I may have neglected to mention that one out of four Pathologist believes that the orginal MEL on my back was the primary–which changes the staging. And this makes "sense" since the spread was to the regional lymph node –not a distant site.

                    If you have access to clinic trials please let me know!  Is there a database of how many patients are seen at these Mel Centers and a break down of different stages, no primary, etc?

                    Thank you

                    AnnG
                    Participant

                      Thank you for your advice,

                      I have requested that the tumor tissue be tested for the BRAF,  c-KIT and NRAS.  Is this not standard procedure?

                      Searching for investigative trials is challenging–most require something to measure-which fortunately I am NED. I am going to look into some new technologies that test the blood for microscopic cells. 

                      I live in western NY but want to go to a top Melanoma Center where the Drs have seen unusual presenations such as mine. I may have neglected to mention that one out of four Pathologist believes that the orginal MEL on my back was the primary–which changes the staging. And this makes "sense" since the spread was to the regional lymph node –not a distant site.

                      If you have access to clinic trials please let me know!  Is there a database of how many patients are seen at these Mel Centers and a break down of different stages, no primary, etc?

                      Thank you

                      POW
                      Participant

                        Ann, although getting the diagnosis of melanoma with "unknown primary" is statistically rare, a number of patients here have had that happen to them. As far as I can tell, the treatment for melanoma with unknown primary is the same as for melanoma with a known primary. The difficulty comes in, as you have discovered, with being diagnosed as a Stage III or Stage IV. The staging effects your clinical trial options and your treatment options. I don't know how other patients with unknown primaries have handled this. Perhaps you could start a new thread specifically asking about cases of "unknown primaries" and how and where they were treated. 

                        BRAF testing has become routine in most pathology labs; c-Kit and NRAS not so much. However, more and more melanoma patients are requesting such testing because it can help identify the best treatment options. Especially with an unknown primary, if the original lesion was not cutaneous melanoma (i.e., if it was mucosal melanoma, for example) the mutation panel might be different and the recommended treatments might be different. 

                        As for finding clinical trials– that is a challenge for everybody. If you are going to a melanoma specialty center, certainly you would ask your doctors to recommend suitable clinical trials for you. But many melanoma patients feel more secure if they do some research themselves– especially if they are able to travel to other sites that offer different clinical trials. We just had a recent thread talking about various ways to find clinical trials. You can view that thread at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/new-clinical-trial-finder

                        POW
                        Participant

                          Ann, although getting the diagnosis of melanoma with "unknown primary" is statistically rare, a number of patients here have had that happen to them. As far as I can tell, the treatment for melanoma with unknown primary is the same as for melanoma with a known primary. The difficulty comes in, as you have discovered, with being diagnosed as a Stage III or Stage IV. The staging effects your clinical trial options and your treatment options. I don't know how other patients with unknown primaries have handled this. Perhaps you could start a new thread specifically asking about cases of "unknown primaries" and how and where they were treated. 

                          BRAF testing has become routine in most pathology labs; c-Kit and NRAS not so much. However, more and more melanoma patients are requesting such testing because it can help identify the best treatment options. Especially with an unknown primary, if the original lesion was not cutaneous melanoma (i.e., if it was mucosal melanoma, for example) the mutation panel might be different and the recommended treatments might be different. 

                          As for finding clinical trials– that is a challenge for everybody. If you are going to a melanoma specialty center, certainly you would ask your doctors to recommend suitable clinical trials for you. But many melanoma patients feel more secure if they do some research themselves– especially if they are able to travel to other sites that offer different clinical trials. We just had a recent thread talking about various ways to find clinical trials. You can view that thread at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/new-clinical-trial-finder

                          POW
                          Participant

                            Ann, although getting the diagnosis of melanoma with "unknown primary" is statistically rare, a number of patients here have had that happen to them. As far as I can tell, the treatment for melanoma with unknown primary is the same as for melanoma with a known primary. The difficulty comes in, as you have discovered, with being diagnosed as a Stage III or Stage IV. The staging effects your clinical trial options and your treatment options. I don't know how other patients with unknown primaries have handled this. Perhaps you could start a new thread specifically asking about cases of "unknown primaries" and how and where they were treated. 

                            BRAF testing has become routine in most pathology labs; c-Kit and NRAS not so much. However, more and more melanoma patients are requesting such testing because it can help identify the best treatment options. Especially with an unknown primary, if the original lesion was not cutaneous melanoma (i.e., if it was mucosal melanoma, for example) the mutation panel might be different and the recommended treatments might be different. 

                            As for finding clinical trials– that is a challenge for everybody. If you are going to a melanoma specialty center, certainly you would ask your doctors to recommend suitable clinical trials for you. But many melanoma patients feel more secure if they do some research themselves– especially if they are able to travel to other sites that offer different clinical trials. We just had a recent thread talking about various ways to find clinical trials. You can view that thread at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/new-clinical-trial-finder

                            kylez
                            Participant

                              Ann, to try at one of your questions, maybe a way to very roughly gauge how many patients are seen at a mel center is to got to their web site and count the number of specialist melanoma oncologists. Where I go there are 2; on the high end of the scale perhaps, MSK in your state lists 7. Likewise for dermatologists (1 where I go.) 

                              kylez
                              Participant

                                Ann, to try at one of your questions, maybe a way to very roughly gauge how many patients are seen at a mel center is to got to their web site and count the number of specialist melanoma oncologists. Where I go there are 2; on the high end of the scale perhaps, MSK in your state lists 7. Likewise for dermatologists (1 where I go.) 

                                kylez
                                Participant

                                  Ann, to try at one of your questions, maybe a way to very roughly gauge how many patients are seen at a mel center is to got to their web site and count the number of specialist melanoma oncologists. Where I go there are 2; on the high end of the scale perhaps, MSK in your state lists 7. Likewise for dermatologists (1 where I go.) 

                                  AnnG
                                  Participant

                                    Thank you for your advice,

                                    I have requested that the tumor tissue be tested for the BRAF,  c-KIT and NRAS.  Is this not standard procedure?

                                    Searching for investigative trials is challenging–most require something to measure-which fortunately I am NED. I am going to look into some new technologies that test the blood for microscopic cells. 

                                    I live in western NY but want to go to a top Melanoma Center where the Drs have seen unusual presenations such as mine. I may have neglected to mention that one out of four Pathologist believes that the orginal MEL on my back was the primary–which changes the staging. And this makes "sense" since the spread was to the regional lymph node –not a distant site.

                                    If you have access to clinic trials please let me know!  Is there a database of how many patients are seen at these Mel Centers and a break down of different stages, no primary, etc?

                                    Thank you

                                  POW
                                  Participant

                                    I have heard the same thing that Kyle heard– Leukine (trade name for GM-CSF) was FDA approved 20 years ago for certain purposes. It has been tested as a vaccine treatment for melanoma but although some patients did benefit, most did not. This new formulation being delivered by a virus might be successful. We don't know yet. 

                                    Since you are now considered Stage IV NED (no evidence of disease), you would probably be elegible for ipi (trade name Yervoy) which was FDA approved 2 years ago. I don't know if your NED status would be a problem for that. Other than that, there are a number of promising new treatments now in clinical trials. Again, most clinical trials want you to have at least one tumor so that they can test it via a biopsy and so that they can track whether their treatment is working. If you would like to investigate clinical trials, let us know and we will try to help you find information.

                                    The best idea is for you to go to a melanoma specialty clinic– the specialists there are usually "up" on most of the local clinical trials. Memorial Sloan Kettering is well-regarded, as is NYU Langone Medical Center. There are several excellent melanoma centers in the Boston area, too. Farther from your home, Moffitt in Tampa and MD Anderson in Houston are highly rated as are probably half a dozen others in various states. 

                                    Before you spend much time looking for clinical trials, it would probably be a good idea to have your tumor tissue tested for the BRAF, c-KIT and NRAS mutations if that hasn't been done yet. Many clinical trials are limited to people having one or another of such genetic factors. 

                                    Good luck, and please do keep us posted as to how things are going with you.

                                     

                                    POW
                                    Participant

                                      I have heard the same thing that Kyle heard– Leukine (trade name for GM-CSF) was FDA approved 20 years ago for certain purposes. It has been tested as a vaccine treatment for melanoma but although some patients did benefit, most did not. This new formulation being delivered by a virus might be successful. We don't know yet. 

                                      Since you are now considered Stage IV NED (no evidence of disease), you would probably be elegible for ipi (trade name Yervoy) which was FDA approved 2 years ago. I don't know if your NED status would be a problem for that. Other than that, there are a number of promising new treatments now in clinical trials. Again, most clinical trials want you to have at least one tumor so that they can test it via a biopsy and so that they can track whether their treatment is working. If you would like to investigate clinical trials, let us know and we will try to help you find information.

                                      The best idea is for you to go to a melanoma specialty clinic– the specialists there are usually "up" on most of the local clinical trials. Memorial Sloan Kettering is well-regarded, as is NYU Langone Medical Center. There are several excellent melanoma centers in the Boston area, too. Farther from your home, Moffitt in Tampa and MD Anderson in Houston are highly rated as are probably half a dozen others in various states. 

                                      Before you spend much time looking for clinical trials, it would probably be a good idea to have your tumor tissue tested for the BRAF, c-KIT and NRAS mutations if that hasn't been done yet. Many clinical trials are limited to people having one or another of such genetic factors. 

                                      Good luck, and please do keep us posted as to how things are going with you.

                                       

                                      ecc26
                                      Participant

                                        To my knowledge, GM-CSF on it's own is not effective for Melanoma, but it has shown some promise when used along side Ipilimumab (Yervoy) by reducing side effects and potentially increasing any benefit from the Ipi. Use of the combo is still in trials, but since GM-CSF has been approved for many years my local oncologist was able to prescribe it for me to use alongside the Ipi I recieved this past summer. 

                                        GM-CSF, or Leukine, has been approved and used for many years as a way to help immunocompromised patients boost their white blood cell counts. It's also frequently used in patients who recieve a bone marrow transplants. GM-CSF stands for Granulocyte Macrophage- Colony Stimulating Factor. Without getting too deep into the immunology and physiology/cell biology of it all basically a granulocyte is the grandfather cell in your bone marrow to the majority of your white blood cells; so a granulocyte colony stimulating factor tells the granulocytes in your marrow to pick up the pace and kick out more white blood cells. The granuloctyes make all of your white cells EXCEPT lymphocytes, which are the ones that attack Melanoma, which is why it's not really used for Melanoma on it's own. 

                                        The other part of the "GM" though is Macrophage, and this is where the renewed intrest and trials with Ipi comes in. If you look on a Complete Blood Count (CBC, where they look at your red and white cells) one of the cell types listed is Monocyte. A monocyte comes from the granulocyte I talked about earlier, and after a while circulating in your bloodstream it leaves the blood and hangs out in your tissues as a macrophage. A macrophage's job is to clean up. For example in your lungs, they clean up any dust or stray bacteria that make it past your nasal passages, sinuses, etc. They also clean up dead cells. Some of these macrophages morph again into what is called a dendritic cell.

                                        Dendritic cells look a little like starfish, with lots of arms. Their job is to gather "stuff" (dead bacteria, viurses, tumor cells, etc). Once it's gotten enough stuff it goes running off to your lymph nodes with it. The lymph nodes are where the lymphocytes (the cancer fighting cells) live and wait to be told what to do. The Dendritic cell's job is to give the lympocytes their marching orders, so to speak. They take their "stuff" to the lymph node and stimulate the multiplying of lymphocytes that are "trained" to attack the "stuff" the dendritic cell brought back. Here's the part that's useful for Melanoma treatment- getting more lymphocytes.

                                        Back to those Macrophages: In immunology research, when they want to make Dendritic cells, they expose Macrophages to GM-CSF to entice them to do their morphing into the dendritic cell. So for Melanoma, the goal of using GM-CSF is to first increase production of Monocytes, which turn into increased numbers of Macrophages, which hopefully wil turn into increased numbers of Dendritic cells, which hopefully will be more likely to bring back peices of tumor to make more lymphocytes.

                                        Phew… That's a lot, and a very round about way of trying to get more lymphocytes. Used on it's own, however GM-CSF has a reputation for making tumors (including Melanoma) grow more quickly, which is why it's not generally used as a stand alone therapy. Used aong side Ipi, however early data indicates that it may enhance any benefit gained from the Ipi. Ipi is large doses of an antibody, whose job it is to help your immune system recognize that the Melanoma is bad. The combo is an effort to maximize your body's possible response by increasing the number of teachers (dendritic cells) available for the students (lympocytes), so to speak.

                                        This is a very oversimplified explanation, but I also hope I haven't confused anyone. I'm sorry if I have, but the use of GM-CSF has been coming around a lot and it seems like a lot of people don't really know what it is, how it works, or why it's being used. I thought I'd take a shot at explaining it. 

                                         

                                        ecc26
                                        Participant

                                          To my knowledge, GM-CSF on it's own is not effective for Melanoma, but it has shown some promise when used along side Ipilimumab (Yervoy) by reducing side effects and potentially increasing any benefit from the Ipi. Use of the combo is still in trials, but since GM-CSF has been approved for many years my local oncologist was able to prescribe it for me to use alongside the Ipi I recieved this past summer. 

                                          GM-CSF, or Leukine, has been approved and used for many years as a way to help immunocompromised patients boost their white blood cell counts. It's also frequently used in patients who recieve a bone marrow transplants. GM-CSF stands for Granulocyte Macrophage- Colony Stimulating Factor. Without getting too deep into the immunology and physiology/cell biology of it all basically a granulocyte is the grandfather cell in your bone marrow to the majority of your white blood cells; so a granulocyte colony stimulating factor tells the granulocytes in your marrow to pick up the pace and kick out more white blood cells. The granuloctyes make all of your white cells EXCEPT lymphocytes, which are the ones that attack Melanoma, which is why it's not really used for Melanoma on it's own. 

                                          The other part of the "GM" though is Macrophage, and this is where the renewed intrest and trials with Ipi comes in. If you look on a Complete Blood Count (CBC, where they look at your red and white cells) one of the cell types listed is Monocyte. A monocyte comes from the granulocyte I talked about earlier, and after a while circulating in your bloodstream it leaves the blood and hangs out in your tissues as a macrophage. A macrophage's job is to clean up. For example in your lungs, they clean up any dust or stray bacteria that make it past your nasal passages, sinuses, etc. They also clean up dead cells. Some of these macrophages morph again into what is called a dendritic cell.

                                          Dendritic cells look a little like starfish, with lots of arms. Their job is to gather "stuff" (dead bacteria, viurses, tumor cells, etc). Once it's gotten enough stuff it goes running off to your lymph nodes with it. The lymph nodes are where the lymphocytes (the cancer fighting cells) live and wait to be told what to do. The Dendritic cell's job is to give the lympocytes their marching orders, so to speak. They take their "stuff" to the lymph node and stimulate the multiplying of lymphocytes that are "trained" to attack the "stuff" the dendritic cell brought back. Here's the part that's useful for Melanoma treatment- getting more lymphocytes.

                                          Back to those Macrophages: In immunology research, when they want to make Dendritic cells, they expose Macrophages to GM-CSF to entice them to do their morphing into the dendritic cell. So for Melanoma, the goal of using GM-CSF is to first increase production of Monocytes, which turn into increased numbers of Macrophages, which hopefully wil turn into increased numbers of Dendritic cells, which hopefully will be more likely to bring back peices of tumor to make more lymphocytes.

                                          Phew… That's a lot, and a very round about way of trying to get more lymphocytes. Used on it's own, however GM-CSF has a reputation for making tumors (including Melanoma) grow more quickly, which is why it's not generally used as a stand alone therapy. Used aong side Ipi, however early data indicates that it may enhance any benefit gained from the Ipi. Ipi is large doses of an antibody, whose job it is to help your immune system recognize that the Melanoma is bad. The combo is an effort to maximize your body's possible response by increasing the number of teachers (dendritic cells) available for the students (lympocytes), so to speak.

                                          This is a very oversimplified explanation, but I also hope I haven't confused anyone. I'm sorry if I have, but the use of GM-CSF has been coming around a lot and it seems like a lot of people don't really know what it is, how it works, or why it's being used. I thought I'd take a shot at explaining it. 

                                           

                                            BrianP
                                            Participant

                                              Thanks for the explanation!

                                              BrianP
                                              Participant

                                                Thanks for the explanation!

                                                BrianP
                                                Participant

                                                  Thanks for the explanation!

                                                  AnnG
                                                  Participant

                                                    Thank you for this information.

                                                    I don't want to put myself through the Leukine treatment if it is ineffective or worst can cause more harm by making tumors.

                                                    Since I am NED and there are no approved blood tests to detect any remaining MEL cells, I am at a loss for what to do on a preventative basis. I'd rather be proactive then wait and see.

                                                    Most trials seem to be for measurable disease but I will continue to research.

                                                    I am going to have the pathologist test for the Braf mutation and NRAS mutation as these were not completed. 

                                                    Are you in the medical field or just a patient who is very well informed? 

                                                    Thank you

                                                    AnnG
                                                    Participant

                                                      Thank you for this information.

                                                      I don't want to put myself through the Leukine treatment if it is ineffective or worst can cause more harm by making tumors.

                                                      Since I am NED and there are no approved blood tests to detect any remaining MEL cells, I am at a loss for what to do on a preventative basis. I'd rather be proactive then wait and see.

                                                      Most trials seem to be for measurable disease but I will continue to research.

                                                      I am going to have the pathologist test for the Braf mutation and NRAS mutation as these were not completed. 

                                                      Are you in the medical field or just a patient who is very well informed? 

                                                      Thank you

                                                      ecc26
                                                      Participant

                                                        I am in the medical field, but I had to consult a former professor of immunology to figure out why on earth I had been put on a drug that stimulated bone marrow to produce more of everything except the needed lymphocytes. I didn't make the connection that they use it to make the dendritic cells in research labs until I talked with her. 

                                                        Best of luck to you

                                                        ecc26
                                                        Participant

                                                          I am in the medical field, but I had to consult a former professor of immunology to figure out why on earth I had been put on a drug that stimulated bone marrow to produce more of everything except the needed lymphocytes. I didn't make the connection that they use it to make the dendritic cells in research labs until I talked with her. 

                                                          Best of luck to you

                                                          ecc26
                                                          Participant

                                                            I am in the medical field, but I had to consult a former professor of immunology to figure out why on earth I had been put on a drug that stimulated bone marrow to produce more of everything except the needed lymphocytes. I didn't make the connection that they use it to make the dendritic cells in research labs until I talked with her. 

                                                            Best of luck to you

                                                            AnnG
                                                            Participant

                                                              Thank you for this information.

                                                              I don't want to put myself through the Leukine treatment if it is ineffective or worst can cause more harm by making tumors.

                                                              Since I am NED and there are no approved blood tests to detect any remaining MEL cells, I am at a loss for what to do on a preventative basis. I'd rather be proactive then wait and see.

                                                              Most trials seem to be for measurable disease but I will continue to research.

                                                              I am going to have the pathologist test for the Braf mutation and NRAS mutation as these were not completed. 

                                                              Are you in the medical field or just a patient who is very well informed? 

                                                              Thank you

                                                            ecc26
                                                            Participant

                                                              To my knowledge, GM-CSF on it's own is not effective for Melanoma, but it has shown some promise when used along side Ipilimumab (Yervoy) by reducing side effects and potentially increasing any benefit from the Ipi. Use of the combo is still in trials, but since GM-CSF has been approved for many years my local oncologist was able to prescribe it for me to use alongside the Ipi I recieved this past summer. 

                                                              GM-CSF, or Leukine, has been approved and used for many years as a way to help immunocompromised patients boost their white blood cell counts. It's also frequently used in patients who recieve a bone marrow transplants. GM-CSF stands for Granulocyte Macrophage- Colony Stimulating Factor. Without getting too deep into the immunology and physiology/cell biology of it all basically a granulocyte is the grandfather cell in your bone marrow to the majority of your white blood cells; so a granulocyte colony stimulating factor tells the granulocytes in your marrow to pick up the pace and kick out more white blood cells. The granuloctyes make all of your white cells EXCEPT lymphocytes, which are the ones that attack Melanoma, which is why it's not really used for Melanoma on it's own. 

                                                              The other part of the "GM" though is Macrophage, and this is where the renewed intrest and trials with Ipi comes in. If you look on a Complete Blood Count (CBC, where they look at your red and white cells) one of the cell types listed is Monocyte. A monocyte comes from the granulocyte I talked about earlier, and after a while circulating in your bloodstream it leaves the blood and hangs out in your tissues as a macrophage. A macrophage's job is to clean up. For example in your lungs, they clean up any dust or stray bacteria that make it past your nasal passages, sinuses, etc. They also clean up dead cells. Some of these macrophages morph again into what is called a dendritic cell.

                                                              Dendritic cells look a little like starfish, with lots of arms. Their job is to gather "stuff" (dead bacteria, viurses, tumor cells, etc). Once it's gotten enough stuff it goes running off to your lymph nodes with it. The lymph nodes are where the lymphocytes (the cancer fighting cells) live and wait to be told what to do. The Dendritic cell's job is to give the lympocytes their marching orders, so to speak. They take their "stuff" to the lymph node and stimulate the multiplying of lymphocytes that are "trained" to attack the "stuff" the dendritic cell brought back. Here's the part that's useful for Melanoma treatment- getting more lymphocytes.

                                                              Back to those Macrophages: In immunology research, when they want to make Dendritic cells, they expose Macrophages to GM-CSF to entice them to do their morphing into the dendritic cell. So for Melanoma, the goal of using GM-CSF is to first increase production of Monocytes, which turn into increased numbers of Macrophages, which hopefully wil turn into increased numbers of Dendritic cells, which hopefully will be more likely to bring back peices of tumor to make more lymphocytes.

                                                              Phew… That's a lot, and a very round about way of trying to get more lymphocytes. Used on it's own, however GM-CSF has a reputation for making tumors (including Melanoma) grow more quickly, which is why it's not generally used as a stand alone therapy. Used aong side Ipi, however early data indicates that it may enhance any benefit gained from the Ipi. Ipi is large doses of an antibody, whose job it is to help your immune system recognize that the Melanoma is bad. The combo is an effort to maximize your body's possible response by increasing the number of teachers (dendritic cells) available for the students (lympocytes), so to speak.

                                                              This is a very oversimplified explanation, but I also hope I haven't confused anyone. I'm sorry if I have, but the use of GM-CSF has been coming around a lot and it seems like a lot of people don't really know what it is, how it works, or why it's being used. I thought I'd take a shot at explaining it. 

                                                               

                                                              Gene_S
                                                              Participant

                                                                My husband was in a clinical trial using both the Ipi 10 mg/kg and GM-CSF in a combo.

                                                                It worked well for him and I really  like the explanation by ecc.

                                                                The only problem he had with the GM-CSF was when he got the full 1ml shots he had enormous red, hot, raised blotches at the site so he had to cut the dosage in half and then he was fine.  GM-CSF is given in self injections of 14 days on and 7 days off.  He did this for 2 years 9 months.

                                                                Judy (loving wife of Gene Stage IV and now NED)

                                                                Gene_S
                                                                Participant

                                                                  My husband was in a clinical trial using both the Ipi 10 mg/kg and GM-CSF in a combo.

                                                                  It worked well for him and I really  like the explanation by ecc.

                                                                  The only problem he had with the GM-CSF was when he got the full 1ml shots he had enormous red, hot, raised blotches at the site so he had to cut the dosage in half and then he was fine.  GM-CSF is given in self injections of 14 days on and 7 days off.  He did this for 2 years 9 months.

                                                                  Judy (loving wife of Gene Stage IV and now NED)

                                                                    pd1gal
                                                                    Participant

                                                                      Hi Judy,

                                                                      I took Leukine as a stage 3 patient for 6 months back in 2009 and had additonal tumors appear so I stopped taking it.

                                                                       

                                                                      Trial results were reported that indicated that it was not effective against Mel.

                                                                       

                                                                      You can also enter Leukine in the search box above and then click on the MPIP tab to get alot more patient views on Leukine.

                                                                       

                                                                      By the way I then went on to stage 4 in 2012, got in the 1st Merk PD1 trial and have been NED for almost 2 years now.

                                                                       

                                                                      Good luck and well wishes to you and your husband.

                                                                      pd1gal
                                                                      Participant

                                                                        Hi Judy,

                                                                        I took Leukine as a stage 3 patient for 6 months back in 2009 and had additonal tumors appear so I stopped taking it.

                                                                         

                                                                        Trial results were reported that indicated that it was not effective against Mel.

                                                                         

                                                                        You can also enter Leukine in the search box above and then click on the MPIP tab to get alot more patient views on Leukine.

                                                                         

                                                                        By the way I then went on to stage 4 in 2012, got in the 1st Merk PD1 trial and have been NED for almost 2 years now.

                                                                         

                                                                        Good luck and well wishes to you and your husband.

                                                                        pd1gal
                                                                        Participant

                                                                          Hi Judy,

                                                                          I took Leukine as a stage 3 patient for 6 months back in 2009 and had additonal tumors appear so I stopped taking it.

                                                                           

                                                                          Trial results were reported that indicated that it was not effective against Mel.

                                                                           

                                                                          You can also enter Leukine in the search box above and then click on the MPIP tab to get alot more patient views on Leukine.

                                                                           

                                                                          By the way I then went on to stage 4 in 2012, got in the 1st Merk PD1 trial and have been NED for almost 2 years now.

                                                                           

                                                                          Good luck and well wishes to you and your husband.

                                                                        Gene_S
                                                                        Participant

                                                                          My husband was in a clinical trial using both the Ipi 10 mg/kg and GM-CSF in a combo.

                                                                          It worked well for him and I really  like the explanation by ecc.

                                                                          The only problem he had with the GM-CSF was when he got the full 1ml shots he had enormous red, hot, raised blotches at the site so he had to cut the dosage in half and then he was fine.  GM-CSF is given in self injections of 14 days on and 7 days off.  He did this for 2 years 9 months.

                                                                          Judy (loving wife of Gene Stage IV and now NED)

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