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Update

  • Post
    Ali
    Participant

      Just wanted to let you know how things are going for me.  I am happy to read some good reports from a lot of you.

      A brief history:

      3b 2007, 9 months of interferon

      Feb 3c 2011, surgical excision (there weren't as many clinical trials out there for in transit lesions at this time, dang it!) watch and wait

      Jan 2012, routine scans show multiple subqs, liver lesions, bones lesions

      Jan 2012, radiation to femur and ichium

      Just wanted to let you know how things are going for me.  I am happy to read some good reports from a lot of you.

      A brief history:

      3b 2007, 9 months of interferon

      Feb 3c 2011, surgical excision (there weren't as many clinical trials out there for in transit lesions at this time, dang it!) watch and wait

      Jan 2012, routine scans show multiple subqs, liver lesions, bones lesions

      Jan 2012, radiation to femur and ichium

      Feb 2012, high dose IL-2.  All 6 weeks.  Mixed response.  Many tumors gone by the end, many new tumors found in…

      June 2012, 100ish subq tumors, 25 brain mets

      June 2012, IPI and Temodar.  Within days tumors obviously shrinking.  Diarrhea also within days.

      Sept 2012 scans show no brain tumors, only 4 tumors left in the body.  I only had one dose of IPI because of diarrhea, continuing on Temodar

      Nov 2012 scans show resolution of one tumor, growth in the other three

      My first option was an Anti-pd1 trial.  Just got back from Oregon trying to get into the BMS phase 1 comparing those who have had IPI and those who haven't.  i was rejected!  Because I couldn't finish all my doses of IPI (diarrhea).

      This is lose-lose.  I would have responded, and they could have marked that response on their charts.  So I think we will radiate a couple of these and see if my immune system can pick up on the remaining tumors.  If that doesn't work we will try something else.  I am also BRAF positive (luckily), but I am trying to get as much immune response as I can before I go that route. 

      Has anyone gotten into a pd1 trial after taking IPI (other than this one of BMS that I know they won't let me in)?  Any guesses on when this drug will be approved, are we talking years and years?  If we ever see it as compasionate use, will those who have a braf mutation be able to use it as compassionate use, even though there is that other (zelboraf) option out there?

      This is a crazy journey.  So grateful to spend another holiday season with family.  Hope there are lots more to come for all of us.

    Viewing 20 reply threads
    • Replies
        Tina D
        Participant

          Ali,

          I was actually thinking of you yesterday and had a note started to ask how you were doing. However, I thought that if you were in a time of relative calm, you may just as soon enjoy it without getting mail from the forum. I am sorry that you are again facing these challenges & I pray that the radiation will have just that perfect affect on your own immune system. I join you with your appreciation for being here another holiday season. I think it is something we all feel so keenly.

          I have no input for your questions, just wanted to let you know you are being thought of .

          The journey is such a roller-coaster. Wishing you all the best as you go forward.

          Tina

          Tina D
          Participant

            Ali,

            I was actually thinking of you yesterday and had a note started to ask how you were doing. However, I thought that if you were in a time of relative calm, you may just as soon enjoy it without getting mail from the forum. I am sorry that you are again facing these challenges & I pray that the radiation will have just that perfect affect on your own immune system. I join you with your appreciation for being here another holiday season. I think it is something we all feel so keenly.

            I have no input for your questions, just wanted to let you know you are being thought of .

            The journey is such a roller-coaster. Wishing you all the best as you go forward.

            Tina

            Tina D
            Participant

              Ali,

              I was actually thinking of you yesterday and had a note started to ask how you were doing. However, I thought that if you were in a time of relative calm, you may just as soon enjoy it without getting mail from the forum. I am sorry that you are again facing these challenges & I pray that the radiation will have just that perfect affect on your own immune system. I join you with your appreciation for being here another holiday season. I think it is something we all feel so keenly.

              I have no input for your questions, just wanted to let you know you are being thought of .

              The journey is such a roller-coaster. Wishing you all the best as you go forward.

              Tina

                Ali
                Participant

                  Thanks Tina.  All the best and my prayers for you too!

                  Ali
                  Participant

                    Thanks Tina.  All the best and my prayers for you too!

                    Ali
                    Participant

                      Thanks Tina.  All the best and my prayers for you too!

                    POW
                    Participant

                      I understand that people are holding off on Zelboraf because most people become resistant to it sooner or later. However, I still have a lot of hope about the BRAF + MEK combination. Vermuraenib, Dabrafenib, and a new Novartis drug called LDX818 are all being tested in clinical trials in combination with MEK inhibitors. You might think about one of them. 

                      The new trials are: Novartis LGX818 alone ( http://clinicaltrials.gov/show/NCT01436656 ) and LGX818 + the MEK inhibitor MEK162 ( http://clinicaltrials.gov/show/NCT01543698 ). The number of sites is still small, but new sites will be recuriting soon (including Moffitt).

                      POW
                      Participant

                        I understand that people are holding off on Zelboraf because most people become resistant to it sooner or later. However, I still have a lot of hope about the BRAF + MEK combination. Vermuraenib, Dabrafenib, and a new Novartis drug called LDX818 are all being tested in clinical trials in combination with MEK inhibitors. You might think about one of them. 

                        The new trials are: Novartis LGX818 alone ( http://clinicaltrials.gov/show/NCT01436656 ) and LGX818 + the MEK inhibitor MEK162 ( http://clinicaltrials.gov/show/NCT01543698 ). The number of sites is still small, but new sites will be recuriting soon (including Moffitt).

                        POW
                        Participant

                          I understand that people are holding off on Zelboraf because most people become resistant to it sooner or later. However, I still have a lot of hope about the BRAF + MEK combination. Vermuraenib, Dabrafenib, and a new Novartis drug called LDX818 are all being tested in clinical trials in combination with MEK inhibitors. You might think about one of them. 

                          The new trials are: Novartis LGX818 alone ( http://clinicaltrials.gov/show/NCT01436656 ) and LGX818 + the MEK inhibitor MEK162 ( http://clinicaltrials.gov/show/NCT01543698 ). The number of sites is still small, but new sites will be recuriting soon (including Moffitt).

                            Ali
                            Participant

                              Good info, thanks!  I really am not against Zelboraf, but I have had such a good immune response to everything so far, I am hoping to get as much out of them as I can.  I will keep my eye on this one.

                              Ali
                              Participant

                                Good info, thanks!  I really am not against Zelboraf, but I have had such a good immune response to everything so far, I am hoping to get as much out of them as I can.  I will keep my eye on this one.

                                Ali
                                Participant

                                  Good info, thanks!  I really am not against Zelboraf, but I have had such a good immune response to everything so far, I am hoping to get as much out of them as I can.  I will keep my eye on this one.

                                awillett1991
                                Participant
                                  Ali – so good to hear from you. I’ve been wondering how you are doing. I tried to get into several trials, including PD1 and anti PDL1 and took great comfort when someone on this board said that for him, maybe God just knew other people needed a spot more than him. I like to think the same is true for me.

                                  My understanding is that the pharmaceutical companies are interested in those either pre-IPI or failed after all four rounds vs these drugs and the earliest we could expect them on the market would be 2014.

                                  Hope this helps & Merry Christmas,
                                  Amy

                                  awillett1991
                                  Participant
                                    Ali – so good to hear from you. I’ve been wondering how you are doing. I tried to get into several trials, including PD1 and anti PDL1 and took great comfort when someone on this board said that for him, maybe God just knew other people needed a spot more than him. I like to think the same is true for me.

                                    My understanding is that the pharmaceutical companies are interested in those either pre-IPI or failed after all four rounds vs these drugs and the earliest we could expect them on the market would be 2014.

                                    Hope this helps & Merry Christmas,
                                    Amy

                                    awillett1991
                                    Participant
                                      Ali – so good to hear from you. I’ve been wondering how you are doing. I tried to get into several trials, including PD1 and anti PDL1 and took great comfort when someone on this board said that for him, maybe God just knew other people needed a spot more than him. I like to think the same is true for me.

                                      My understanding is that the pharmaceutical companies are interested in those either pre-IPI or failed after all four rounds vs these drugs and the earliest we could expect them on the market would be 2014.

                                      Hope this helps & Merry Christmas,
                                      Amy

                                        Ali
                                        Participant

                                          I like that way of looking at it! ๐Ÿ™‚  Thanks!  Merry Christmas Amy!

                                          Ali
                                          Participant

                                            I like that way of looking at it! ๐Ÿ™‚  Thanks!  Merry Christmas Amy!

                                            Ali
                                            Participant

                                              I like that way of looking at it! ๐Ÿ™‚  Thanks!  Merry Christmas Amy!

                                            Napa K
                                            Participant

                                              Yes, I am on anti PD1 trial now, post Ipi. It is the Merck 3475 trial and I know there are opening. I just spoke with the physician in person this last week to clarify what he had open on a trial front and the answer was multiple anti-PD1 spots for those that have had Ipi.  Please contact me directly if you wish and I will fill you in.  [email protected]

                                               

                                              Wishing you the best-

                                              Kari

                                              Napa K
                                              Participant

                                                Yes, I am on anti PD1 trial now, post Ipi. It is the Merck 3475 trial and I know there are opening. I just spoke with the physician in person this last week to clarify what he had open on a trial front and the answer was multiple anti-PD1 spots for those that have had Ipi.  Please contact me directly if you wish and I will fill you in.  [email protected]

                                                 

                                                Wishing you the best-

                                                Kari

                                                Napa K
                                                Participant

                                                  Yes, I am on anti PD1 trial now, post Ipi. It is the Merck 3475 trial and I know there are opening. I just spoke with the physician in person this last week to clarify what he had open on a trial front and the answer was multiple anti-PD1 spots for those that have had Ipi.  Please contact me directly if you wish and I will fill you in.  [email protected]

                                                   

                                                  Wishing you the best-

                                                  Kari

                                                  JakeinNY
                                                  Participant

                                                    Hi Ali,

                                                    Do yourself a favor and look into the ketogenic diet. This is not some crazy thing that has no history. It has been studied and undergone some small trials and is currently going thru many more trials. Check out the following links:

                                                     

                                                    http://www.nutritionjrnl.com/article/S0899-9007%2812%2900186-4/fulltext

                                                    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

                                                    http://www.nutritionandmetabolism.com/content/4/1/5

                                                    http://www.ncbi.nlm.nih.gov/pubmed/7790697?dopt=Abstract&holding=f1000,f1000m,isrctn

                                                    http://melanomamaverick.com/finally-able-to-cry-emotional-from-ketogenic-diet-or-cancer/

                                                     

                                                    The first four links come from reputable sources.

                                                    The last link is related to melanoma and you can see my post in it but of course I don't know if it's legit, as it is just someone's blog.

                                                    You can talk to your oncologist about all of this.

                                                    Best  wishes for a long life.

                                                    Jake

                                                      JakeinNY
                                                      Participant

                                                        After looking further, I'm not very confident of the last link. I've started to ask her some questions.

                                                        JakeinNY
                                                        Participant

                                                          After looking further, I'm not very confident of the last link. I've started to ask her some questions.

                                                          JakeinNY
                                                          Participant

                                                            After looking further, I'm not very confident of the last link. I've started to ask her some questions.

                                                          JakeinNY
                                                          Participant

                                                            Hi Ali,

                                                            Do yourself a favor and look into the ketogenic diet. This is not some crazy thing that has no history. It has been studied and undergone some small trials and is currently going thru many more trials. Check out the following links:

                                                             

                                                            http://www.nutritionjrnl.com/article/S0899-9007%2812%2900186-4/fulltext

                                                            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

                                                            http://www.nutritionandmetabolism.com/content/4/1/5

                                                            http://www.ncbi.nlm.nih.gov/pubmed/7790697?dopt=Abstract&holding=f1000,f1000m,isrctn

                                                            http://melanomamaverick.com/finally-able-to-cry-emotional-from-ketogenic-diet-or-cancer/

                                                             

                                                            The first four links come from reputable sources.

                                                            The last link is related to melanoma and you can see my post in it but of course I don't know if it's legit, as it is just someone's blog.

                                                            You can talk to your oncologist about all of this.

                                                            Best  wishes for a long life.

                                                            Jake

                                                            JakeinNY
                                                            Participant

                                                              Hi Ali,

                                                              Do yourself a favor and look into the ketogenic diet. This is not some crazy thing that has no history. It has been studied and undergone some small trials and is currently going thru many more trials. Check out the following links:

                                                               

                                                              http://www.nutritionjrnl.com/article/S0899-9007%2812%2900186-4/fulltext

                                                              http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

                                                              http://www.nutritionandmetabolism.com/content/4/1/5

                                                              http://www.ncbi.nlm.nih.gov/pubmed/7790697?dopt=Abstract&holding=f1000,f1000m,isrctn

                                                              http://melanomamaverick.com/finally-able-to-cry-emotional-from-ketogenic-diet-or-cancer/

                                                               

                                                              The first four links come from reputable sources.

                                                              The last link is related to melanoma and you can see my post in it but of course I don't know if it's legit, as it is just someone's blog.

                                                              You can talk to your oncologist about all of this.

                                                              Best  wishes for a long life.

                                                              Jake

                                                              d1i2x3i4e5
                                                              Participant

                                                                Hi I am new on posting on this board.

                                                                Had a small mole removed from lower back Dec 2008 wide excision of area and also sentinol test done in lymph nodes under arms.  Everything checked out and thought they had gotten all of the melanoma.

                                                                Faithfully went to melanoma surgeon and dermatologist for two years.

                                                                After two years diagnosed Dec 2010 – Stage IV had melanoma in bones (back and iliac. head and tibia)

                                                                Cyber knife radiation to head Feb 2011 tumor resolved

                                                                At that time I wasn't feeling sick not even fatigued and my doctor said to wait and not start the conventional treatments.

                                                                I didn't start any other treatment until IPI was approved March of 2011 – so I started IPI May 2011 – I was able to complete 3 treatments and then had to stop because of colitis.

                                                                I think the IPI worked pretty well considering I only was able to take three treatments.  Some of the areas in my bones have resolved and even the subcutanous tumors were resolved.

                                                                August 2012 I had radiation to the head not the brain but the tumor was under my sclap.  The tumor has resolved.

                                                                Now it is one and a half years since IPI and the melanoma in my L2, L4, & T3 have increased in size, I also have three subcutaneous tumors that have more than doubled.

                                                                Fortunately so far no mets are in my organs, (liver, heart, etc)

                                                                The doctor also told me that I cannot take part in PD1 because of the colitis effect of IPI.  I am not Braf positive and the other thing which I forget right now but I am not eligible for a lot of the treatments and trials that are out there.

                                                                The doctor told me I could go on Paclitaxel which is a conventional way of treating Melanoma which is like a chemo type treatment and they have been using it for many years.  However, it is my understanding it makes you very sick and weak and you lose your hair and it doesn't really increase life much longer.

                                                                I do not feel bad right now and still have a good quality of life and wonder if I should sit back and wait for treatment hoping they come out for people that are not Braf positive and cannot take the IPI or PD1 trial.  It seems everything that is hopeful is for Braf positive people.

                                                                Can anyone recommend anything more than the conventional way of treatment.  Also, is there anyone out there just riding it out like me and hoping for them to come up with a treatment other than the conventional treatments that aren't that effective and make you feel really bad.

                                                                Sorry this is so long but it has been a long journey (two years) and a lot of things to cover.  I am grateful for everyday I get up and do not feel that bad. Any response would be appreciated as I do not know what I should do.

                                                                Karen in Florida

                                                                 

                                                                 

                                                                 

                                                                 

                                                                 

                                                                d1i2x3i4e5
                                                                Participant

                                                                  Hi I am new on posting on this board.

                                                                  Had a small mole removed from lower back Dec 2008 wide excision of area and also sentinol test done in lymph nodes under arms.  Everything checked out and thought they had gotten all of the melanoma.

                                                                  Faithfully went to melanoma surgeon and dermatologist for two years.

                                                                  After two years diagnosed Dec 2010 – Stage IV had melanoma in bones (back and iliac. head and tibia)

                                                                  Cyber knife radiation to head Feb 2011 tumor resolved

                                                                  At that time I wasn't feeling sick not even fatigued and my doctor said to wait and not start the conventional treatments.

                                                                  I didn't start any other treatment until IPI was approved March of 2011 – so I started IPI May 2011 – I was able to complete 3 treatments and then had to stop because of colitis.

                                                                  I think the IPI worked pretty well considering I only was able to take three treatments.  Some of the areas in my bones have resolved and even the subcutanous tumors were resolved.

                                                                  August 2012 I had radiation to the head not the brain but the tumor was under my sclap.  The tumor has resolved.

                                                                  Now it is one and a half years since IPI and the melanoma in my L2, L4, & T3 have increased in size, I also have three subcutaneous tumors that have more than doubled.

                                                                  Fortunately so far no mets are in my organs, (liver, heart, etc)

                                                                  The doctor also told me that I cannot take part in PD1 because of the colitis effect of IPI.  I am not Braf positive and the other thing which I forget right now but I am not eligible for a lot of the treatments and trials that are out there.

                                                                  The doctor told me I could go on Paclitaxel which is a conventional way of treating Melanoma which is like a chemo type treatment and they have been using it for many years.  However, it is my understanding it makes you very sick and weak and you lose your hair and it doesn't really increase life much longer.

                                                                  I do not feel bad right now and still have a good quality of life and wonder if I should sit back and wait for treatment hoping they come out for people that are not Braf positive and cannot take the IPI or PD1 trial.  It seems everything that is hopeful is for Braf positive people.

                                                                  Can anyone recommend anything more than the conventional way of treatment.  Also, is there anyone out there just riding it out like me and hoping for them to come up with a treatment other than the conventional treatments that aren't that effective and make you feel really bad.

                                                                  Sorry this is so long but it has been a long journey (two years) and a lot of things to cover.  I am grateful for everyday I get up and do not feel that bad. Any response would be appreciated as I do not know what I should do.

                                                                  Karen in Florida

                                                                   

                                                                   

                                                                   

                                                                   

                                                                   

                                                                  d1i2x3i4e5
                                                                  Participant

                                                                    Hi I am new on posting on this board.

                                                                    Had a small mole removed from lower back Dec 2008 wide excision of area and also sentinol test done in lymph nodes under arms.  Everything checked out and thought they had gotten all of the melanoma.

                                                                    Faithfully went to melanoma surgeon and dermatologist for two years.

                                                                    After two years diagnosed Dec 2010 – Stage IV had melanoma in bones (back and iliac. head and tibia)

                                                                    Cyber knife radiation to head Feb 2011 tumor resolved

                                                                    At that time I wasn't feeling sick not even fatigued and my doctor said to wait and not start the conventional treatments.

                                                                    I didn't start any other treatment until IPI was approved March of 2011 – so I started IPI May 2011 – I was able to complete 3 treatments and then had to stop because of colitis.

                                                                    I think the IPI worked pretty well considering I only was able to take three treatments.  Some of the areas in my bones have resolved and even the subcutanous tumors were resolved.

                                                                    August 2012 I had radiation to the head not the brain but the tumor was under my sclap.  The tumor has resolved.

                                                                    Now it is one and a half years since IPI and the melanoma in my L2, L4, & T3 have increased in size, I also have three subcutaneous tumors that have more than doubled.

                                                                    Fortunately so far no mets are in my organs, (liver, heart, etc)

                                                                    The doctor also told me that I cannot take part in PD1 because of the colitis effect of IPI.  I am not Braf positive and the other thing which I forget right now but I am not eligible for a lot of the treatments and trials that are out there.

                                                                    The doctor told me I could go on Paclitaxel which is a conventional way of treating Melanoma which is like a chemo type treatment and they have been using it for many years.  However, it is my understanding it makes you very sick and weak and you lose your hair and it doesn't really increase life much longer.

                                                                    I do not feel bad right now and still have a good quality of life and wonder if I should sit back and wait for treatment hoping they come out for people that are not Braf positive and cannot take the IPI or PD1 trial.  It seems everything that is hopeful is for Braf positive people.

                                                                    Can anyone recommend anything more than the conventional way of treatment.  Also, is there anyone out there just riding it out like me and hoping for them to come up with a treatment other than the conventional treatments that aren't that effective and make you feel really bad.

                                                                    Sorry this is so long but it has been a long journey (two years) and a lot of things to cover.  I am grateful for everyday I get up and do not feel that bad. Any response would be appreciated as I do not know what I should do.

                                                                    Karen in Florida

                                                                     

                                                                     

                                                                     

                                                                     

                                                                     

                                                                    TSchulz
                                                                    Participant

                                                                      Ali, 

                                                                      I'm wondering if you have considered a TIL trial either through NIH or MD Anderson.  I went through the treatment at NIH in May and thus far have had a very good response – of course hoping for NED and durability soon.  Given your response to IL-2 and ipilibumab you may be a good canidate.  The treatment is tough but I have had a great experience working with them.  

                                                                      Good luck, 

                                                                      Troy

                                                                      TSchulz
                                                                      Participant

                                                                        Ali, 

                                                                        I'm wondering if you have considered a TIL trial either through NIH or MD Anderson.  I went through the treatment at NIH in May and thus far have had a very good response – of course hoping for NED and durability soon.  Given your response to IL-2 and ipilibumab you may be a good canidate.  The treatment is tough but I have had a great experience working with them.  

                                                                        Good luck, 

                                                                        Troy

                                                                          d1i2x3i4e5
                                                                          Participant

                                                                            Thanks for your response.  I actually am currently treating at Moffitt Cancer Center.  When I looked up TIL treatment on the internet it had a big article about Moffitt Researchers and how they have a clinical trial on this.  I don't know why my oncologist hasn't suggested this. 

                                                                            Since some of my tumors have increased on the latest CT/PET scan I questioned him what my options now were and he just mentioned the conventional chemo.  I'm not keen on that treatment because it doesn't seem to get that many possitive results.

                                                                            I do not feel that bad and maybe he is waiting until I do feel bad I don't know his rationale but when I read on this board how everyone's doctor is wonderful and getting them into trials and treatments it makes me wonder if my doctor is doing this for me.

                                                                            I'm not looking to make myself sicker but realize this disease is continuing to grow in my body and I don't want to wait until it has taken over my whole body before I get into another type of treatment.  As I said the IPI I think really gave me good results but sadly because of my colitis side effects is out of the picture for me. 

                                                                            Did you have bad results from IPI too?

                                                                             

                                                                             

                                                                            d1i2x3i4e5
                                                                            Participant

                                                                              Thanks for your response.  I actually am currently treating at Moffitt Cancer Center.  When I looked up TIL treatment on the internet it had a big article about Moffitt Researchers and how they have a clinical trial on this.  I don't know why my oncologist hasn't suggested this. 

                                                                              Since some of my tumors have increased on the latest CT/PET scan I questioned him what my options now were and he just mentioned the conventional chemo.  I'm not keen on that treatment because it doesn't seem to get that many possitive results.

                                                                              I do not feel that bad and maybe he is waiting until I do feel bad I don't know his rationale but when I read on this board how everyone's doctor is wonderful and getting them into trials and treatments it makes me wonder if my doctor is doing this for me.

                                                                              I'm not looking to make myself sicker but realize this disease is continuing to grow in my body and I don't want to wait until it has taken over my whole body before I get into another type of treatment.  As I said the IPI I think really gave me good results but sadly because of my colitis side effects is out of the picture for me. 

                                                                              Did you have bad results from IPI too?

                                                                               

                                                                               

                                                                              POW
                                                                              Participant

                                                                                 

                                                                                You absolutely, positively have a right to know why you are excluded from promising clinical trials. Please call your oncologist and ask him to explain. Maybe he thinks he DID explain, but that doesn't matter. Ask him to explain again. 
                                                                                 
                                                                                That being said, most of the immune-based treatments currently in clnical trials (like PD-1, PD-L1, etc) have the potential to provoke dangerous auto-immune responses. Therefore, people who have autoimmune diseases or people who had an autoimmune reaction to ipi (another immune-based therapy) are usually excluded from these trials. They just don't want to take a chance on it happening to you again. However, you really should ask your oncologist for his reasons for not recommending you for those trials. 
                                                                                 
                                                                                Being BRAF negative is a bummer, too. However, someone posted just the other day that she is on a new MEK+P1K trial that does not require the BRAF mutation. Check it out: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/started-new-trial-mek-and-pi3k-inhibitor
                                                                                 
                                                                                Clinical trials are very complex and there are so many inclusions and exclusions that it's hard to keep track. However, it is a good idea to research clinical trials yourself on clinicaltrials.gov and discuss any that you think might be good for you with your oncolgist. You never know when you will suggest something he hadn't tought of.  
                                                                                POW
                                                                                Participant

                                                                                   

                                                                                  You absolutely, positively have a right to know why you are excluded from promising clinical trials. Please call your oncologist and ask him to explain. Maybe he thinks he DID explain, but that doesn't matter. Ask him to explain again. 
                                                                                   
                                                                                  That being said, most of the immune-based treatments currently in clnical trials (like PD-1, PD-L1, etc) have the potential to provoke dangerous auto-immune responses. Therefore, people who have autoimmune diseases or people who had an autoimmune reaction to ipi (another immune-based therapy) are usually excluded from these trials. They just don't want to take a chance on it happening to you again. However, you really should ask your oncologist for his reasons for not recommending you for those trials. 
                                                                                   
                                                                                  Being BRAF negative is a bummer, too. However, someone posted just the other day that she is on a new MEK+P1K trial that does not require the BRAF mutation. Check it out: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/started-new-trial-mek-and-pi3k-inhibitor
                                                                                   
                                                                                  Clinical trials are very complex and there are so many inclusions and exclusions that it's hard to keep track. However, it is a good idea to research clinical trials yourself on clinicaltrials.gov and discuss any that you think might be good for you with your oncolgist. You never know when you will suggest something he hadn't tought of.  
                                                                                  d1i2x3i4e5
                                                                                  Participant

                                                                                    Thanks I will check out the MEK+P1K since I am an exclusion to the PD1 trial due to IPI side effect.  My doctor is telling me mostly that I do not qualify for the PD1 due to the IPI side effect.  He hasn't mentioned anything else and I seem to be getting more information off of this board than from him at least some things I can check out.

                                                                                     

                                                                                    Karen in FL

                                                                                    d1i2x3i4e5
                                                                                    Participant

                                                                                      Thanks I will check out the MEK+P1K since I am an exclusion to the PD1 trial due to IPI side effect.  My doctor is telling me mostly that I do not qualify for the PD1 due to the IPI side effect.  He hasn't mentioned anything else and I seem to be getting more information off of this board than from him at least some things I can check out.

                                                                                       

                                                                                      Karen in FL

                                                                                      POW
                                                                                      Participant

                                                                                        Oh, I meant to mention that they came out with a new BRAF test that is more sensitive than the original test. Some people who were orignally classified as BRAF negative have retested as BRAF positive. There are some recent posts here and on the Melanoman International Foundation forum about it. 

                                                                                        POW
                                                                                        Participant

                                                                                          Oh, I meant to mention that they came out with a new BRAF test that is more sensitive than the original test. Some people who were orignally classified as BRAF negative have retested as BRAF positive. There are some recent posts here and on the Melanoman International Foundation forum about it. 

                                                                                          POW
                                                                                          Participant

                                                                                            Oh, I meant to mention that they came out with a new BRAF test that is more sensitive than the original test. Some people who were orignally classified as BRAF negative have retested as BRAF positive. There are some recent posts here and on the Melanoman International Foundation forum about it. 

                                                                                            d1i2x3i4e5
                                                                                            Participant

                                                                                              Thanks I will check out the MEK+P1K since I am an exclusion to the PD1 trial due to IPI side effect.  My doctor is telling me mostly that I do not qualify for the PD1 due to the IPI side effect.  He hasn't mentioned anything else and I seem to be getting more information off of this board than from him at least some things I can check out.

                                                                                               

                                                                                              Karen in FL

                                                                                              POW
                                                                                              Participant

                                                                                                 

                                                                                                You absolutely, positively have a right to know why you are excluded from promising clinical trials. Please call your oncologist and ask him to explain. Maybe he thinks he DID explain, but that doesn't matter. Ask him to explain again. 
                                                                                                 
                                                                                                That being said, most of the immune-based treatments currently in clnical trials (like PD-1, PD-L1, etc) have the potential to provoke dangerous auto-immune responses. Therefore, people who have autoimmune diseases or people who had an autoimmune reaction to ipi (another immune-based therapy) are usually excluded from these trials. They just don't want to take a chance on it happening to you again. However, you really should ask your oncologist for his reasons for not recommending you for those trials. 
                                                                                                 
                                                                                                Being BRAF negative is a bummer, too. However, someone posted just the other day that she is on a new MEK+P1K trial that does not require the BRAF mutation. Check it out: http://www.melanoma.org/community/mpip-melanoma-patients-information-page/started-new-trial-mek-and-pi3k-inhibitor
                                                                                                 
                                                                                                Clinical trials are very complex and there are so many inclusions and exclusions that it's hard to keep track. However, it is a good idea to research clinical trials yourself on clinicaltrials.gov and discuss any that you think might be good for you with your oncolgist. You never know when you will suggest something he hadn't tought of.  
                                                                                                TSchulz
                                                                                                Participant

                                                                                                  From what I've read, Moffitt hasn't been doing TIL therapy for about a year or so due to lack of funds – it is very expensive and labor intensive.  Possibly, that is why they haven't encouraged you to look for it elsewhere – I don't know???  

                                                                                                  From what I see in your history, you may want to go see the folks at NIH for an opinion (or MD Anderson).  They will screen your records and see if you are even close to being candidate before bringing you in for a consultation. That way you are not making a trip for nothing.  This happened pretty fast for me and I think I was out there within 7-10 days. The treatment itself is difficult but I bounced back from it quick and was back working about 8-9 days after returning home from it.  For me, I'd talk to them prior to jumping at conventional chemo if time allows for you – especially if you are feeling well. 

                                                                                                  One of the fellows at NIH told me that they think (no reportable data) they are seeing an improved response in people who have seen ipi.  We'll have to wait and see if that gets reported.  

                                                                                                  I had 4 doses of ipi as part of another trial I did and it didn't seem to do anything to me.  I was very nervous about the side effects before starting but they could have given me saline for all I know.  In fact, after my 3rd infusion I went and played soccer later that night.  Maybe a little itching, maybe not – it was winter time….  Turmors didn't seem to respond either.  

                                                                                                  I am happy to share anything else I can.  You can email me off this site if that makes sense – [email protected].  

                                                                                                  Keep fighting, I know how hard it is when these treatment/trials don't show the results we want.  You have seen amazing results with stuff already which must be encouraging.  

                                                                                                  Best, Troy

                                                                                                   

                                                                                                   

                                                                                                   

                                                                                                   

                                                                                                  TSchulz
                                                                                                  Participant

                                                                                                    From what I've read, Moffitt hasn't been doing TIL therapy for about a year or so due to lack of funds – it is very expensive and labor intensive.  Possibly, that is why they haven't encouraged you to look for it elsewhere – I don't know???  

                                                                                                    From what I see in your history, you may want to go see the folks at NIH for an opinion (or MD Anderson).  They will screen your records and see if you are even close to being candidate before bringing you in for a consultation. That way you are not making a trip for nothing.  This happened pretty fast for me and I think I was out there within 7-10 days. The treatment itself is difficult but I bounced back from it quick and was back working about 8-9 days after returning home from it.  For me, I'd talk to them prior to jumping at conventional chemo if time allows for you – especially if you are feeling well. 

                                                                                                    One of the fellows at NIH told me that they think (no reportable data) they are seeing an improved response in people who have seen ipi.  We'll have to wait and see if that gets reported.  

                                                                                                    I had 4 doses of ipi as part of another trial I did and it didn't seem to do anything to me.  I was very nervous about the side effects before starting but they could have given me saline for all I know.  In fact, after my 3rd infusion I went and played soccer later that night.  Maybe a little itching, maybe not – it was winter time….  Turmors didn't seem to respond either.  

                                                                                                    I am happy to share anything else I can.  You can email me off this site if that makes sense – [email protected].  

                                                                                                    Keep fighting, I know how hard it is when these treatment/trials don't show the results we want.  You have seen amazing results with stuff already which must be encouraging.  

                                                                                                    Best, Troy

                                                                                                     

                                                                                                     

                                                                                                     

                                                                                                     

                                                                                                    d1i2x3i4e5
                                                                                                    Participant

                                                                                                      Thanks for the info.  I read on the internet that was dated December 2012 about how Moffitt was doing the ACT TIL research.  I will check it out further.  Probably not going to get too many answers this time of year.

                                                                                                      As I told you I was only able to take three treatments of IPI before I had the bad side effect of colitis but I do feel like it has kept me living a year and a half longer.  Some of the subcutaneous nodules disappeared and some of the bone mets have been resolved.  I wasn't that sick on the IPI but they say the side effect would be worse if I took it again.  I was told that "they can't kill me to cure me" when I asked if I could take the fourth treatment of the IPI.

                                                                                                      I will look into NIH or MD Anderson to see if they have an opinion of me that is different from my doctor.

                                                                                                      Karen in FL

                                                                                                      d1i2x3i4e5
                                                                                                      Participant

                                                                                                        Thanks for the info.  I read on the internet that was dated December 2012 about how Moffitt was doing the ACT TIL research.  I will check it out further.  Probably not going to get too many answers this time of year.

                                                                                                        As I told you I was only able to take three treatments of IPI before I had the bad side effect of colitis but I do feel like it has kept me living a year and a half longer.  Some of the subcutaneous nodules disappeared and some of the bone mets have been resolved.  I wasn't that sick on the IPI but they say the side effect would be worse if I took it again.  I was told that "they can't kill me to cure me" when I asked if I could take the fourth treatment of the IPI.

                                                                                                        I will look into NIH or MD Anderson to see if they have an opinion of me that is different from my doctor.

                                                                                                        Karen in FL

                                                                                                        d1i2x3i4e5
                                                                                                        Participant

                                                                                                          Thanks for the info.  I read on the internet that was dated December 2012 about how Moffitt was doing the ACT TIL research.  I will check it out further.  Probably not going to get too many answers this time of year.

                                                                                                          As I told you I was only able to take three treatments of IPI before I had the bad side effect of colitis but I do feel like it has kept me living a year and a half longer.  Some of the subcutaneous nodules disappeared and some of the bone mets have been resolved.  I wasn't that sick on the IPI but they say the side effect would be worse if I took it again.  I was told that "they can't kill me to cure me" when I asked if I could take the fourth treatment of the IPI.

                                                                                                          I will look into NIH or MD Anderson to see if they have an opinion of me that is different from my doctor.

                                                                                                          Karen in FL

                                                                                                          TSchulz
                                                                                                          Participant

                                                                                                            From what I've read, Moffitt hasn't been doing TIL therapy for about a year or so due to lack of funds – it is very expensive and labor intensive.  Possibly, that is why they haven't encouraged you to look for it elsewhere – I don't know???  

                                                                                                            From what I see in your history, you may want to go see the folks at NIH for an opinion (or MD Anderson).  They will screen your records and see if you are even close to being candidate before bringing you in for a consultation. That way you are not making a trip for nothing.  This happened pretty fast for me and I think I was out there within 7-10 days. The treatment itself is difficult but I bounced back from it quick and was back working about 8-9 days after returning home from it.  For me, I'd talk to them prior to jumping at conventional chemo if time allows for you – especially if you are feeling well. 

                                                                                                            One of the fellows at NIH told me that they think (no reportable data) they are seeing an improved response in people who have seen ipi.  We'll have to wait and see if that gets reported.  

                                                                                                            I had 4 doses of ipi as part of another trial I did and it didn't seem to do anything to me.  I was very nervous about the side effects before starting but they could have given me saline for all I know.  In fact, after my 3rd infusion I went and played soccer later that night.  Maybe a little itching, maybe not – it was winter time….  Turmors didn't seem to respond either.  

                                                                                                            I am happy to share anything else I can.  You can email me off this site if that makes sense – [email protected].  

                                                                                                            Keep fighting, I know how hard it is when these treatment/trials don't show the results we want.  You have seen amazing results with stuff already which must be encouraging.  

                                                                                                            Best, Troy

                                                                                                             

                                                                                                             

                                                                                                             

                                                                                                             

                                                                                                            d1i2x3i4e5
                                                                                                            Participant

                                                                                                              Thanks for your response.  I actually am currently treating at Moffitt Cancer Center.  When I looked up TIL treatment on the internet it had a big article about Moffitt Researchers and how they have a clinical trial on this.  I don't know why my oncologist hasn't suggested this. 

                                                                                                              Since some of my tumors have increased on the latest CT/PET scan I questioned him what my options now were and he just mentioned the conventional chemo.  I'm not keen on that treatment because it doesn't seem to get that many possitive results.

                                                                                                              I do not feel that bad and maybe he is waiting until I do feel bad I don't know his rationale but when I read on this board how everyone's doctor is wonderful and getting them into trials and treatments it makes me wonder if my doctor is doing this for me.

                                                                                                              I'm not looking to make myself sicker but realize this disease is continuing to grow in my body and I don't want to wait until it has taken over my whole body before I get into another type of treatment.  As I said the IPI I think really gave me good results but sadly because of my colitis side effects is out of the picture for me. 

                                                                                                              Did you have bad results from IPI too?

                                                                                                               

                                                                                                               

                                                                                                            TSchulz
                                                                                                            Participant

                                                                                                              Ali, 

                                                                                                              I'm wondering if you have considered a TIL trial either through NIH or MD Anderson.  I went through the treatment at NIH in May and thus far have had a very good response – of course hoping for NED and durability soon.  Given your response to IL-2 and ipilibumab you may be a good canidate.  The treatment is tough but I have had a great experience working with them.  

                                                                                                              Good luck, 

                                                                                                              Troy

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