Anyone with bone mel see shrinkage with ipi/pd1/pdl ?

› Forums › General Melanoma Community › Anyone with bone mel see shrinkage with ipi/pd1/pdl ?

  • Post
    • February 5, 2014 at 3:36 am
    arthurjedi007
    Participant

      Has anyone with bone mel seen shrinkage with ipi/pd1/pdl ?

      I know some have seen bone mel shrinkage with the taf/mek combo but what about the ipi/etc?

      The Dr said the mel is carried by the blood and some point it got in my bones thus the tumors eatting away my bones from the inside. But since it spreads to different bones then I assume that must be by blood with mel in it so why aren't these meds like zelboraf and ipi so far getting in the bone and shrinking things. Does anyone understand it? I'm trying to learn how this blood and bone stuff work but it goes over my head. If I understand right it's like the bone marrow inside the bones creates the cells. They float around and some immune system cell gets hit by ipi that turns off ctla4. So now that cell floats around hoping to find a cancer cell but all mine are in my bones thus nearly impossible to find. Did I understand right or am I way off?

    Viewing 5 reply threads
    • Replies
        • February 5, 2014 at 4:09 am
        Momrn5
        Participant

          Hi, from what I have read, pd1 seems to be the treatment of choice for many people. Many of the pd1 trials ar e no longer accepting patients. Though there are a few spots left I think for people who have not been treated with Yervoy (ipi).  So, I would speak to your doctor and others on this forum to confirm, but I would try to get into a pd1 trial first if you haven't yet taken ipi.  Ipi can be given at any point because it is now approved.  If you take ipi first, that would make you unable to get a spot for pd1 because you would no longer be ipi naive.  To answer your question, I do think ipi does help with bone mets.  I haven't read much about the pdl drug, so can't speak to that. It is very new.  Best Wishes. 

          • February 5, 2014 at 4:09 am
          Momrn5
          Participant

            Hi, from what I have read, pd1 seems to be the treatment of choice for many people. Many of the pd1 trials ar e no longer accepting patients. Though there are a few spots left I think for people who have not been treated with Yervoy (ipi).  So, I would speak to your doctor and others on this forum to confirm, but I would try to get into a pd1 trial first if you haven't yet taken ipi.  Ipi can be given at any point because it is now approved.  If you take ipi first, that would make you unable to get a spot for pd1 because you would no longer be ipi naive.  To answer your question, I do think ipi does help with bone mets.  I haven't read much about the pdl drug, so can't speak to that. It is very new.  Best Wishes. 

            • February 5, 2014 at 4:09 am
            Momrn5
            Participant

              Hi, from what I have read, pd1 seems to be the treatment of choice for many people. Many of the pd1 trials ar e no longer accepting patients. Though there are a few spots left I think for people who have not been treated with Yervoy (ipi).  So, I would speak to your doctor and others on this forum to confirm, but I would try to get into a pd1 trial first if you haven't yet taken ipi.  Ipi can be given at any point because it is now approved.  If you take ipi first, that would make you unable to get a spot for pd1 because you would no longer be ipi naive.  To answer your question, I do think ipi does help with bone mets.  I haven't read much about the pdl drug, so can't speak to that. It is very new.  Best Wishes. 

                • February 5, 2014 at 4:17 am
                Momrn5
                Participant

                  Well, I see you have already taken ipi, so that would make it harder to get into a pd1 trial because most spots are already taken.  I would suggest speaking with Catherine Poole at Melanoma International, she may know about open pd1 trial spots and could answer your questions in relation to pdL.  I would ask her what she thinks about the T/M combo too.  The trick is to find a drug that works for you. 

                  • February 5, 2014 at 4:17 am
                  Momrn5
                  Participant

                    Well, I see you have already taken ipi, so that would make it harder to get into a pd1 trial because most spots are already taken.  I would suggest speaking with Catherine Poole at Melanoma International, she may know about open pd1 trial spots and could answer your questions in relation to pdL.  I would ask her what she thinks about the T/M combo too.  The trick is to find a drug that works for you. 

                    • February 5, 2014 at 4:17 am
                    Momrn5
                    Participant

                      Well, I see you have already taken ipi, so that would make it harder to get into a pd1 trial because most spots are already taken.  I would suggest speaking with Catherine Poole at Melanoma International, she may know about open pd1 trial spots and could answer your questions in relation to pdL.  I would ask her what she thinks about the T/M combo too.  The trick is to find a drug that works for you. 

                    • February 5, 2014 at 12:49 pm
                    POW
                    Participant

                      Arthur, bones do have a circulatory system. They are a living tissue which is why broken bones can heal. New blood cells are made in the bone marrow and get out to the rest of the body. However, there is less blood flow in bones compared to most other tissues like liver, kidney, muscle, etc. Bone infections, for example, do heal– antibiotics and immune cells get in there and fight the infection– but bone infections often take longer to heal than do other tissues.

                      As others have said, anything that is is your blood stream including drugs and antibodies and activated T-cells can get into your bones and do their job. I was just wondering if the reduced circulation in bone tissue compared to other tissues would have any impact on treatment effectiveness.

                      • February 5, 2014 at 12:49 pm
                      POW
                      Participant

                        Arthur, bones do have a circulatory system. They are a living tissue which is why broken bones can heal. New blood cells are made in the bone marrow and get out to the rest of the body. However, there is less blood flow in bones compared to most other tissues like liver, kidney, muscle, etc. Bone infections, for example, do heal– antibiotics and immune cells get in there and fight the infection– but bone infections often take longer to heal than do other tissues.

                        As others have said, anything that is is your blood stream including drugs and antibodies and activated T-cells can get into your bones and do their job. I was just wondering if the reduced circulation in bone tissue compared to other tissues would have any impact on treatment effectiveness.

                        • February 5, 2014 at 12:49 pm
                        POW
                        Participant

                          Arthur, bones do have a circulatory system. They are a living tissue which is why broken bones can heal. New blood cells are made in the bone marrow and get out to the rest of the body. However, there is less blood flow in bones compared to most other tissues like liver, kidney, muscle, etc. Bone infections, for example, do heal– antibiotics and immune cells get in there and fight the infection– but bone infections often take longer to heal than do other tissues.

                          As others have said, anything that is is your blood stream including drugs and antibodies and activated T-cells can get into your bones and do their job. I was just wondering if the reduced circulation in bone tissue compared to other tissues would have any impact on treatment effectiveness.

                            • February 5, 2014 at 4:47 pm
                            arthurjedi007
                            Participant

                              Hmm. Thank you. That is probably what is happening. The reduced circulation in bone means less meds in the blood getting into the bone thus less affective treatment.

                              I probably need something that gets directly into the bone somehow. I dunno.

                              I know the bone strengtheners like zometa somehow target bone. I'm allergic to that family of medicines in that 1 dose of zometa started jaw necrosis. Fortunately after a couple months the gum healed on its own. But that might be the link to a family of meds that get into bones that I'm very susspetible to. Also there are bone medicines for osteoporsis that somehow target bone.

                              Somehow combining a bone med like that with a med that kills the cancer cells mabye even surgically attached to the bone would shrink the tumors and strengthen the bone. I dunno. I'm still trying to get ahold of my Dr at Mayo to see if they have a miracle to try. Plus I'm trying to get into the non nivo pd1 at sarah cannon.

                               

                              • February 5, 2014 at 4:47 pm
                              arthurjedi007
                              Participant

                                Hmm. Thank you. That is probably what is happening. The reduced circulation in bone means less meds in the blood getting into the bone thus less affective treatment.

                                I probably need something that gets directly into the bone somehow. I dunno.

                                I know the bone strengtheners like zometa somehow target bone. I'm allergic to that family of medicines in that 1 dose of zometa started jaw necrosis. Fortunately after a couple months the gum healed on its own. But that might be the link to a family of meds that get into bones that I'm very susspetible to. Also there are bone medicines for osteoporsis that somehow target bone.

                                Somehow combining a bone med like that with a med that kills the cancer cells mabye even surgically attached to the bone would shrink the tumors and strengthen the bone. I dunno. I'm still trying to get ahold of my Dr at Mayo to see if they have a miracle to try. Plus I'm trying to get into the non nivo pd1 at sarah cannon.

                                 

                                • February 5, 2014 at 4:47 pm
                                arthurjedi007
                                Participant

                                  Hmm. Thank you. That is probably what is happening. The reduced circulation in bone means less meds in the blood getting into the bone thus less affective treatment.

                                  I probably need something that gets directly into the bone somehow. I dunno.

                                  I know the bone strengtheners like zometa somehow target bone. I'm allergic to that family of medicines in that 1 dose of zometa started jaw necrosis. Fortunately after a couple months the gum healed on its own. But that might be the link to a family of meds that get into bones that I'm very susspetible to. Also there are bone medicines for osteoporsis that somehow target bone.

                                  Somehow combining a bone med like that with a med that kills the cancer cells mabye even surgically attached to the bone would shrink the tumors and strengthen the bone. I dunno. I'm still trying to get ahold of my Dr at Mayo to see if they have a miracle to try. Plus I'm trying to get into the non nivo pd1 at sarah cannon.

                                   

                                  • February 6, 2014 at 7:54 am
                                  JerryfromFauq
                                  Participant

                                    The Immunotherapy treatment do not attack the melanoma cells, there are not chemotherapy.  The immunotherapy treatements like IL-2, IPI, and pd-1 attempt jump start the immune system so that the immune system will recognize the cancer cells and the immune system will then attempt to distroy the cancer cells.  Any of the immunotherapy treatments that work on a particular individual should also work on the tumors in the bones.  I know that the IL-2 treatments have done so.

                                    • February 6, 2014 at 7:54 am
                                    JerryfromFauq
                                    Participant

                                      The Immunotherapy treatment do not attack the melanoma cells, there are not chemotherapy.  The immunotherapy treatements like IL-2, IPI, and pd-1 attempt jump start the immune system so that the immune system will recognize the cancer cells and the immune system will then attempt to distroy the cancer cells.  Any of the immunotherapy treatments that work on a particular individual should also work on the tumors in the bones.  I know that the IL-2 treatments have done so.

                                      • February 7, 2014 at 2:59 am
                                      arthurjedi007
                                      Participant

                                        I hope so for me but my Dr says it is difficult to treat bone mets and so far the meds have shrank nothing and everything is growing. I too think the ipi is working it's just the fda dose is too little for me. I need a higher dose trial like the ipi one i'm trying to get into.

                                        If I understand right but these things go over my head but I think maybe the ipi (anti-ctla4) floats around the blood until it finds an immune cell. Then it attaches to it which deactivates ctla4. Then that activated immune cell floats around the blood for the cancer cell and if it recognizes it boom that cancer cell is gone. Plus somehow the immune system knows how to create more activated immune cells of that type. Of course I may not understand it right. pd1 is the same except its the pd1. Since there is less blood circulation in bone it still can work but not as well. So yeah I'm hoping the ipi is still working. I actually got what I call a minor ipi rash on my neck yesterday so that is good and it's still there a little.

                                        Mayo had me go ahead and get the taf/mek combo ordered from my local dr so if I fail to get into a pd1 trial I will have it ready. Since my t10 has collapsed 50% some of the bones rub each other making it difficult to do much but I still walk an hour a day. Since that pd1 trial is some 0-1 thing I might be disqualified he said but definitely go ahead and try. Otherwise my blood work and feeling except my back and left shoulder is pretty good. They are amazed all my mel is still in bone. The Mayo Dr confirmed they reviewed the pathology glass slides that was done local so based on the slides there has been no misdiagnosis.

                                        • February 7, 2014 at 2:59 am
                                        arthurjedi007
                                        Participant

                                          I hope so for me but my Dr says it is difficult to treat bone mets and so far the meds have shrank nothing and everything is growing. I too think the ipi is working it's just the fda dose is too little for me. I need a higher dose trial like the ipi one i'm trying to get into.

                                          If I understand right but these things go over my head but I think maybe the ipi (anti-ctla4) floats around the blood until it finds an immune cell. Then it attaches to it which deactivates ctla4. Then that activated immune cell floats around the blood for the cancer cell and if it recognizes it boom that cancer cell is gone. Plus somehow the immune system knows how to create more activated immune cells of that type. Of course I may not understand it right. pd1 is the same except its the pd1. Since there is less blood circulation in bone it still can work but not as well. So yeah I'm hoping the ipi is still working. I actually got what I call a minor ipi rash on my neck yesterday so that is good and it's still there a little.

                                          Mayo had me go ahead and get the taf/mek combo ordered from my local dr so if I fail to get into a pd1 trial I will have it ready. Since my t10 has collapsed 50% some of the bones rub each other making it difficult to do much but I still walk an hour a day. Since that pd1 trial is some 0-1 thing I might be disqualified he said but definitely go ahead and try. Otherwise my blood work and feeling except my back and left shoulder is pretty good. They are amazed all my mel is still in bone. The Mayo Dr confirmed they reviewed the pathology glass slides that was done local so based on the slides there has been no misdiagnosis.

                                          • February 7, 2014 at 2:59 am
                                          arthurjedi007
                                          Participant

                                            I hope so for me but my Dr says it is difficult to treat bone mets and so far the meds have shrank nothing and everything is growing. I too think the ipi is working it's just the fda dose is too little for me. I need a higher dose trial like the ipi one i'm trying to get into.

                                            If I understand right but these things go over my head but I think maybe the ipi (anti-ctla4) floats around the blood until it finds an immune cell. Then it attaches to it which deactivates ctla4. Then that activated immune cell floats around the blood for the cancer cell and if it recognizes it boom that cancer cell is gone. Plus somehow the immune system knows how to create more activated immune cells of that type. Of course I may not understand it right. pd1 is the same except its the pd1. Since there is less blood circulation in bone it still can work but not as well. So yeah I'm hoping the ipi is still working. I actually got what I call a minor ipi rash on my neck yesterday so that is good and it's still there a little.

                                            Mayo had me go ahead and get the taf/mek combo ordered from my local dr so if I fail to get into a pd1 trial I will have it ready. Since my t10 has collapsed 50% some of the bones rub each other making it difficult to do much but I still walk an hour a day. Since that pd1 trial is some 0-1 thing I might be disqualified he said but definitely go ahead and try. Otherwise my blood work and feeling except my back and left shoulder is pretty good. They are amazed all my mel is still in bone. The Mayo Dr confirmed they reviewed the pathology glass slides that was done local so based on the slides there has been no misdiagnosis.

                                            • February 7, 2014 at 9:11 am
                                            Mat
                                            Participant

                                              Artie, the "0-1 thing" is probably your performance status.  A status of 0 or 1 basically means you have little difficulty getting around.

                                              • February 7, 2014 at 9:11 am
                                              Mat
                                              Participant

                                                Artie, the "0-1 thing" is probably your performance status.  A status of 0 or 1 basically means you have little difficulty getting around.

                                                • February 7, 2014 at 9:11 am
                                                Mat
                                                Participant

                                                  Artie, the "0-1 thing" is probably your performance status.  A status of 0 or 1 basically means you have little difficulty getting around.

                                                  • February 7, 2014 at 10:10 am
                                                  JerryfromFauq
                                                  Participant

                                                     HAte that  0-1 talk.  In this digital world my thoughts of 0 or 1 means no go (0) or go (1) or off -on

                                                    Is the trial he is looking at still accepting new participants, many aren't.

                                                    http://ecog.dfci.harvard.edu/general/perf_stat.html

                                                         

                                                    ECOG Performance Status

                                                    These scales and criteria are used by doctors and researchers to assess how a patient's disease is progressing, assess how the disease affects the daily living abilities of the patient, and determine appropriate treatment and prognosis. They are included here for health care professionals to access.

                                                     

                                                    ECOG PERFORMANCE STATUS*
                                                    Grade ECOG
                                                    0 Fully active, able to carry on all pre-disease performance without restriction
                                                    1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
                                                    2 Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours
                                                    3 Capable of only limited selfcare, confined to bed or chair more than 50% of waking hours
                                                    4 Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair
                                                    5 Dead

                                                    * As published in Am. J. Clin. Oncol.:
                                                    Oken, M.M., Creech, R.H., Tormey, D.C., Horton, J., Davis, T.E., McFadden, E.T., Carbone, P.P.: Toxicity And Response Criteria Of The Eastern Cooperative Oncology Group. Am J Clin Oncol 5:649-655, 1982.

                                                    The ECOG Performance Status is in the public domain therefore available for public use. To duplicate the scale, please cite the reference above and credit the Eastern Cooperative Oncology Group, Robert Comis M.D., Group Chair.

                                                    Here is a NIH trial that is looking at ratings.

                                                    http://www.cancer.gov/clinicaltrials/search/view?cdrid=540332&version=HealthProfessional

                                                    Assessment Tool for Older Patients With Cancer Basic Trial Information
                                                    Trial Description
                                                         Summary
                                                         Further Trial Information
                                                         Eligibility Criteria
                                                    Trial Contact Information

                                                     

                                                     

                                                    • February 7, 2014 at 10:10 am
                                                    JerryfromFauq
                                                    Participant

                                                       HAte that  0-1 talk.  In this digital world my thoughts of 0 or 1 means no go (0) or go (1) or off -on

                                                      Is the trial he is looking at still accepting new participants, many aren't.

                                                      http://ecog.dfci.harvard.edu/general/perf_stat.html

                                                           

                                                      ECOG Performance Status

                                                      These scales and criteria are used by doctors and researchers to assess how a patient's disease is progressing, assess how the disease affects the daily living abilities of the patient, and determine appropriate treatment and prognosis. They are included here for health care professionals to access.

                                                       

                                                      ECOG PERFORMANCE STATUS*
                                                      Grade ECOG
                                                      0 Fully active, able to carry on all pre-disease performance without restriction
                                                      1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
                                                      2 Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours
                                                      3 Capable of only limited selfcare, confined to bed or chair more than 50% of waking hours
                                                      4 Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair
                                                      5 Dead

                                                      * As published in Am. J. Clin. Oncol.:
                                                      Oken, M.M., Creech, R.H., Tormey, D.C., Horton, J., Davis, T.E., McFadden, E.T., Carbone, P.P.: Toxicity And Response Criteria Of The Eastern Cooperative Oncology Group. Am J Clin Oncol 5:649-655, 1982.

                                                      The ECOG Performance Status is in the public domain therefore available for public use. To duplicate the scale, please cite the reference above and credit the Eastern Cooperative Oncology Group, Robert Comis M.D., Group Chair.

                                                      Here is a NIH trial that is looking at ratings.

                                                      http://www.cancer.gov/clinicaltrials/search/view?cdrid=540332&version=HealthProfessional

                                                      Assessment Tool for Older Patients With Cancer Basic Trial Information
                                                      Trial Description
                                                           Summary
                                                           Further Trial Information
                                                           Eligibility Criteria
                                                      Trial Contact Information

                                                       

                                                       

                                                      • February 7, 2014 at 10:10 am
                                                      JerryfromFauq
                                                      Participant

                                                         HAte that  0-1 talk.  In this digital world my thoughts of 0 or 1 means no go (0) or go (1) or off -on

                                                        Is the trial he is looking at still accepting new participants, many aren't.

                                                        http://ecog.dfci.harvard.edu/general/perf_stat.html

                                                             

                                                        ECOG Performance Status

                                                        These scales and criteria are used by doctors and researchers to assess how a patient's disease is progressing, assess how the disease affects the daily living abilities of the patient, and determine appropriate treatment and prognosis. They are included here for health care professionals to access.

                                                         

                                                        ECOG PERFORMANCE STATUS*
                                                        Grade ECOG
                                                        0 Fully active, able to carry on all pre-disease performance without restriction
                                                        1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
                                                        2 Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours
                                                        3 Capable of only limited selfcare, confined to bed or chair more than 50% of waking hours
                                                        4 Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair
                                                        5 Dead

                                                        * As published in Am. J. Clin. Oncol.:
                                                        Oken, M.M., Creech, R.H., Tormey, D.C., Horton, J., Davis, T.E., McFadden, E.T., Carbone, P.P.: Toxicity And Response Criteria Of The Eastern Cooperative Oncology Group. Am J Clin Oncol 5:649-655, 1982.

                                                        The ECOG Performance Status is in the public domain therefore available for public use. To duplicate the scale, please cite the reference above and credit the Eastern Cooperative Oncology Group, Robert Comis M.D., Group Chair.

                                                        Here is a NIH trial that is looking at ratings.

                                                        http://www.cancer.gov/clinicaltrials/search/view?cdrid=540332&version=HealthProfessional

                                                        Assessment Tool for Older Patients With Cancer Basic Trial Information
                                                        Trial Description
                                                             Summary
                                                             Further Trial Information
                                                             Eligibility Criteria
                                                        Trial Contact Information

                                                         

                                                         

                                                        • February 7, 2014 at 5:23 pm
                                                        arthurjedi007
                                                        Participant

                                                          Thanks. Looks like technically I'm a 2. Primarily cause my back I can't lift but a pound or so. The cancer has litterally ate away large parts of the vertebrae. I've lost about 2 inches now in height. But I walk 2 miles a day and have little pain with no pain meds so go figure. But this trial is only for 0-1. My doc is going to do a mri wed probably to figure out surgery but I dunno. I can still walk fine so I dunno if surgery should be done. That would weaken me when I need my strength to fight this cancer.

                                                          The PD1 is non nivo of some small company but my doc says go for it. Two guys at Sarah Canon checked and both said it is open and recruiting. Currently I'm trying to confirm they got all my medical records then in 4-5 days I'm supposed to hear from them and get an appointment setup within 2 weeks. Not a lot of efficient beurocracy at Sarah Canon but I guess most places are like that I dunno.

                                                          This is the trial I believe Celeste first posted that got me started on it.

                                                          http://www.clinicaltrials.gov/ct2/results?term=NCT02013804&Search=Search

                                                          As a backup I've got the taf/mek getting ordered. My nurse says that will probably take 2 weeks then delivery so it will probably both be about the same time. Just heard from the insurance folks so I know it's in the works and will happen eventually. Taking the taf/mek though disqualifies for the pd1 unless it was stopped 4 weeks before so I would prefer to see what the folks at sarah cannon have to say before I start the taf/mek. I had no success with zelboraf so I have little confidence in the taf/mek although I have read some who fail on zel work with taf/mek.

                                                           

                                                          • February 7, 2014 at 5:23 pm
                                                          arthurjedi007
                                                          Participant

                                                            Thanks. Looks like technically I'm a 2. Primarily cause my back I can't lift but a pound or so. The cancer has litterally ate away large parts of the vertebrae. I've lost about 2 inches now in height. But I walk 2 miles a day and have little pain with no pain meds so go figure. But this trial is only for 0-1. My doc is going to do a mri wed probably to figure out surgery but I dunno. I can still walk fine so I dunno if surgery should be done. That would weaken me when I need my strength to fight this cancer.

                                                            The PD1 is non nivo of some small company but my doc says go for it. Two guys at Sarah Canon checked and both said it is open and recruiting. Currently I'm trying to confirm they got all my medical records then in 4-5 days I'm supposed to hear from them and get an appointment setup within 2 weeks. Not a lot of efficient beurocracy at Sarah Canon but I guess most places are like that I dunno.

                                                            This is the trial I believe Celeste first posted that got me started on it.

                                                            http://www.clinicaltrials.gov/ct2/results?term=NCT02013804&Search=Search

                                                            As a backup I've got the taf/mek getting ordered. My nurse says that will probably take 2 weeks then delivery so it will probably both be about the same time. Just heard from the insurance folks so I know it's in the works and will happen eventually. Taking the taf/mek though disqualifies for the pd1 unless it was stopped 4 weeks before so I would prefer to see what the folks at sarah cannon have to say before I start the taf/mek. I had no success with zelboraf so I have little confidence in the taf/mek although I have read some who fail on zel work with taf/mek.

                                                             

                                                            • February 7, 2014 at 5:23 pm
                                                            arthurjedi007
                                                            Participant

                                                              Thanks. Looks like technically I'm a 2. Primarily cause my back I can't lift but a pound or so. The cancer has litterally ate away large parts of the vertebrae. I've lost about 2 inches now in height. But I walk 2 miles a day and have little pain with no pain meds so go figure. But this trial is only for 0-1. My doc is going to do a mri wed probably to figure out surgery but I dunno. I can still walk fine so I dunno if surgery should be done. That would weaken me when I need my strength to fight this cancer.

                                                              The PD1 is non nivo of some small company but my doc says go for it. Two guys at Sarah Canon checked and both said it is open and recruiting. Currently I'm trying to confirm they got all my medical records then in 4-5 days I'm supposed to hear from them and get an appointment setup within 2 weeks. Not a lot of efficient beurocracy at Sarah Canon but I guess most places are like that I dunno.

                                                              This is the trial I believe Celeste first posted that got me started on it.

                                                              http://www.clinicaltrials.gov/ct2/results?term=NCT02013804&Search=Search

                                                              As a backup I've got the taf/mek getting ordered. My nurse says that will probably take 2 weeks then delivery so it will probably both be about the same time. Just heard from the insurance folks so I know it's in the works and will happen eventually. Taking the taf/mek though disqualifies for the pd1 unless it was stopped 4 weeks before so I would prefer to see what the folks at sarah cannon have to say before I start the taf/mek. I had no success with zelboraf so I have little confidence in the taf/mek although I have read some who fail on zel work with taf/mek.

                                                               

                                                              • February 6, 2014 at 7:54 am
                                                              JerryfromFauq
                                                              Participant

                                                                The Immunotherapy treatment do not attack the melanoma cells, there are not chemotherapy.  The immunotherapy treatements like IL-2, IPI, and pd-1 attempt jump start the immune system so that the immune system will recognize the cancer cells and the immune system will then attempt to distroy the cancer cells.  Any of the immunotherapy treatments that work on a particular individual should also work on the tumors in the bones.  I know that the IL-2 treatments have done so.

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