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failed testing to get on PD-1 trial :(

Forums General Melanoma Community failed testing to get on PD-1 trial :(

  • Post
    Laurie from maine
    Participant

      hi,

      Last week I was going thru the testing necessary to get into PD-1 trial in Boston.  Unfortunately they found a small brain tumor that knocked me out, very hard to hear as I was so excited for the opportunity to be in that trial. 

      So after getting brain zapped I now wait 4 weeks and get another body scan and brain mri to see if I can qualify for another Pd-1 trial if there are any around at that point, and that will take me.

      hi,

      Last week I was going thru the testing necessary to get into PD-1 trial in Boston.  Unfortunately they found a small brain tumor that knocked me out, very hard to hear as I was so excited for the opportunity to be in that trial. 

      So after getting brain zapped I now wait 4 weeks and get another body scan and brain mri to see if I can qualify for another Pd-1 trial if there are any around at that point, and that will take me.

      My doctor wants to just watch and wait.  (i was partial responder to BRAF and Ippi)  Currently I have a large tumor on my collar bone that keeps slowly growing now size of baseball, but other soft tumors not growing and can breath well, and have energy so really not sure what is going on.   Doctor hopes that next scans will show that ippi is late kicking in and we can maybe down the road to a reinduction of ippi.  IL-2 is not a good bet for me with brain involvement.  So he is talking possibility of chemo if things start to grow again (tumors lung, liver, adrenal gland, soft tumors etc)   When on BRAF I had 3 agressive tumors appear in intestines requiring surgery and doctor is afraid if that agressive cancer reappears things will go bad fast, but currently stomach remaining quiet.  Scary to be sitting and just waiting for next months scans and even then not really having an option that seems optmistic for me. 

      I am wondering while I sit and wait if anyone has any thoughts or options that I should pursue? 

       

      * Yale had an open spot on their trial that was combinbing ippi and mdx-1106 the spot that was open  was for prior ippi people who had had finished their last ippi infusion within 4-12 weeks.  I am hopeful someone on here can take advantage of that trial is a great trial, I missed out on that one too because of brain radiation pushing me past my ippi time frame.  They were great people to talk to at Yale.

      take care

      laurie from maine

    Viewing 5 reply threads
    • Replies
        JC
        Participant

          Did I read your profile right that your initial lesion was Stage I, less than 1mm?  That is so scary, because very often I think most people in that category are told they are "low risk" and they won't have to deal with that melanoma again, etc…. 

          JC
          Participant

            Did I read your profile right that your initial lesion was Stage I, less than 1mm?  That is so scary, because very often I think most people in that category are told they are "low risk" and they won't have to deal with that melanoma again, etc…. 

            JC
            Participant

              Did I read your profile right that your initial lesion was Stage I, less than 1mm?  That is so scary, because very often I think most people in that category are told they are "low risk" and they won't have to deal with that melanoma again, etc…. 

                AllyNTAus
                Participant
                  Laurie, I don’t have any real suggestions for you but just wanted to send you best wishes and hope for an effective treatment soon.

                  Anon – yes it is scary, my primary was originally measured at 0.83 then the plastic surgeon doing my WLE got it re-checked and the opinion was it was 1.1mm. He said still very low risk for any spread but said on balance that he recommended SLNB. Despite his confidence that would be clear, I ended up with a positive node, and subsequent axillary dissection found another 2. 9 months later I was stage 4 by virtue of some small lung mets. The moral of the story seems to be that you can’t rely on the “expected” with melanoma and you need to do all the investigating and take all the treatment steps you possibly can.

                  NYKaren
                  Participant
                    Oh Laurie, I so understand your disappointment. I was counting on PD-1 as my next step, but no dice. I’m going tomorrow for chest & abdom CT, appt w/onc & Remicade infusion to try & resolve colitis. Pituitary MRI next week. I wish I had some idea what to do while other issues are being resolved, but I haven’t got a clue. Hopefully I’ll know more after tomorrow. (I’m so nervous!)

                    I hope you’re able to qualify for PD-1 in the future –did your onc. say it’s a possibility?

                    Hugs,
                    karen

                    Laurie from maine
                    Participant

                      Hi Karen,

                      Thank you.  How did your appt with onc go?  Did they give you any guidance where you go from here?  I am sorry you are dealing with colitis also that is very hard.

                      I was told that if I had no new brain involvement (MRI in a month) I could look into PD-1 trials, none currently open in Boston.    Doctor wanted me to realize that now with having had brain involvement I move down the list to get a seat on a PD-1 trial, but not ruled out.  I also hoped that with the recent buzz about PD-1 that we would see more and more trials opening up, but my doctor was not optimistic that new trials would open up soon.  I was very disappinted but like all of us – we are fighters and I have learned from this board to not give up and keep trying!

                      keep us posted

                      laurie from maine

                      Laurie from maine
                      Participant

                        Hi Karen,

                        Thank you.  How did your appt with onc go?  Did they give you any guidance where you go from here?  I am sorry you are dealing with colitis also that is very hard.

                        I was told that if I had no new brain involvement (MRI in a month) I could look into PD-1 trials, none currently open in Boston.    Doctor wanted me to realize that now with having had brain involvement I move down the list to get a seat on a PD-1 trial, but not ruled out.  I also hoped that with the recent buzz about PD-1 that we would see more and more trials opening up, but my doctor was not optimistic that new trials would open up soon.  I was very disappinted but like all of us – we are fighters and I have learned from this board to not give up and keep trying!

                        keep us posted

                        laurie from maine

                        NYKaren
                        Participant
                          Hi Laurie,
                          Thanks so much for asking about my appointment The colitis is slightly better; I just had my 2nd Remicade infusion. Turns out that BMS is excluding anyone w/prior Remicade from their PD-1 trial. Picky picky! So I’ll know more after pituitary and brain MRI next week.
                          Yes, the people @ Yale-New Haven are terrific. I was there for IL-2.
                          Good luck to all of us with getting into a trial!
                          Take care,
                          Karen
                          NYKaren
                          Participant
                            Hi Laurie,
                            Thanks so much for asking about my appointment The colitis is slightly better; I just had my 2nd Remicade infusion. Turns out that BMS is excluding anyone w/prior Remicade from their PD-1 trial. Picky picky! So I’ll know more after pituitary and brain MRI next week.
                            Yes, the people @ Yale-New Haven are terrific. I was there for IL-2.
                            Good luck to all of us with getting into a trial!
                            Take care,
                            Karen
                            NYKaren
                            Participant
                              Hi Laurie,
                              Thanks so much for asking about my appointment The colitis is slightly better; I just had my 2nd Remicade infusion. Turns out that BMS is excluding anyone w/prior Remicade from their PD-1 trial. Picky picky! So I’ll know more after pituitary and brain MRI next week.
                              Yes, the people @ Yale-New Haven are terrific. I was there for IL-2.
                              Good luck to all of us with getting into a trial!
                              Take care,
                              Karen
                              Gene_S
                              Participant

                                Laurie,  RE: "we are fighters and I have learned from this board to not give up and keep trying!"

                                Amen, that was (and still is) my thoughts before I started my trial with ippi. My suggestion is to do a search on

                                "Ralph Moss and melanoma". He sells a very good report ( I bought one a few years ago) that will give you

                                other treatment options in the event that you need them. The report is not cheap by any means… but your life is worth it.

                                Best wishes,

                                Gene

                                Gene_S
                                Participant

                                  Laurie,  RE: "we are fighters and I have learned from this board to not give up and keep trying!"

                                  Amen, that was (and still is) my thoughts before I started my trial with ippi. My suggestion is to do a search on

                                  "Ralph Moss and melanoma". He sells a very good report ( I bought one a few years ago) that will give you

                                  other treatment options in the event that you need them. The report is not cheap by any means… but your life is worth it.

                                  Best wishes,

                                  Gene

                                  Gene_S
                                  Participant

                                    Laurie,  RE: "we are fighters and I have learned from this board to not give up and keep trying!"

                                    Amen, that was (and still is) my thoughts before I started my trial with ippi. My suggestion is to do a search on

                                    "Ralph Moss and melanoma". He sells a very good report ( I bought one a few years ago) that will give you

                                    other treatment options in the event that you need them. The report is not cheap by any means… but your life is worth it.

                                    Best wishes,

                                    Gene

                                    Laurie from maine
                                    Participant

                                      Hi Karen,

                                      Thank you.  How did your appt with onc go?  Did they give you any guidance where you go from here?  I am sorry you are dealing with colitis also that is very hard.

                                      I was told that if I had no new brain involvement (MRI in a month) I could look into PD-1 trials, none currently open in Boston.    Doctor wanted me to realize that now with having had brain involvement I move down the list to get a seat on a PD-1 trial, but not ruled out.  I also hoped that with the recent buzz about PD-1 that we would see more and more trials opening up, but my doctor was not optimistic that new trials would open up soon.  I was very disappinted but like all of us – we are fighters and I have learned from this board to not give up and keep trying!

                                      keep us posted

                                      laurie from maine

                                      NYKaren
                                      Participant
                                        Oh Laurie, I so understand your disappointment. I was counting on PD-1 as my next step, but no dice. I’m going tomorrow for chest & abdom CT, appt w/onc & Remicade infusion to try & resolve colitis. Pituitary MRI next week. I wish I had some idea what to do while other issues are being resolved, but I haven’t got a clue. Hopefully I’ll know more after tomorrow. (I’m so nervous!)

                                        I hope you’re able to qualify for PD-1 in the future –did your onc. say it’s a possibility?

                                        Hugs,
                                        karen

                                        NYKaren
                                        Participant
                                          Oh Laurie, I so understand your disappointment. I was counting on PD-1 as my next step, but no dice. I’m going tomorrow for chest & abdom CT, appt w/onc & Remicade infusion to try & resolve colitis. Pituitary MRI next week. I wish I had some idea what to do while other issues are being resolved, but I haven’t got a clue. Hopefully I’ll know more after tomorrow. (I’m so nervous!)

                                          I hope you’re able to qualify for PD-1 in the future –did your onc. say it’s a possibility?

                                          Hugs,
                                          karen

                                          AllyNTAus
                                          Participant
                                            Laurie, I don’t have any real suggestions for you but just wanted to send you best wishes and hope for an effective treatment soon.

                                            Anon – yes it is scary, my primary was originally measured at 0.83 then the plastic surgeon doing my WLE got it re-checked and the opinion was it was 1.1mm. He said still very low risk for any spread but said on balance that he recommended SLNB. Despite his confidence that would be clear, I ended up with a positive node, and subsequent axillary dissection found another 2. 9 months later I was stage 4 by virtue of some small lung mets. The moral of the story seems to be that you can’t rely on the “expected” with melanoma and you need to do all the investigating and take all the treatment steps you possibly can.

                                            AllyNTAus
                                            Participant
                                              Laurie, I don’t have any real suggestions for you but just wanted to send you best wishes and hope for an effective treatment soon.

                                              Anon – yes it is scary, my primary was originally measured at 0.83 then the plastic surgeon doing my WLE got it re-checked and the opinion was it was 1.1mm. He said still very low risk for any spread but said on balance that he recommended SLNB. Despite his confidence that would be clear, I ended up with a positive node, and subsequent axillary dissection found another 2. 9 months later I was stage 4 by virtue of some small lung mets. The moral of the story seems to be that you can’t rely on the “expected” with melanoma and you need to do all the investigating and take all the treatment steps you possibly can.

                                              Laurie from maine
                                              Participant

                                                Hi,

                                                Yes the original spot was .75 and I was told by my dermatologist that " I was so lucky" and no other tests needed.  Then when I went to stage 3  my dermatologist and I had a long talk and he told me that hearing my bad news changed things for him.   he never again would tell people less than 1mm they were ok, and in fact tells them to go to Boston and talk to specialists   It is a very scary disease

                                                laurie from maine

                                                Laurie from maine
                                                Participant

                                                  Hi,

                                                  Yes the original spot was .75 and I was told by my dermatologist that " I was so lucky" and no other tests needed.  Then when I went to stage 3  my dermatologist and I had a long talk and he told me that hearing my bad news changed things for him.   he never again would tell people less than 1mm they were ok, and in fact tells them to go to Boston and talk to specialists   It is a very scary disease

                                                  laurie from maine

                                                  Laurie from maine
                                                  Participant

                                                    Hi,

                                                    Yes the original spot was .75 and I was told by my dermatologist that " I was so lucky" and no other tests needed.  Then when I went to stage 3  my dermatologist and I had a long talk and he told me that hearing my bad news changed things for him.   he never again would tell people less than 1mm they were ok, and in fact tells them to go to Boston and talk to specialists   It is a very scary disease

                                                    laurie from maine

                                                  LynnLuc
                                                  Participant

                                                    I hope your scans show your brain met is gone and you get into the Anti PD 1 trial. As a matter of fact I met a man last wednesday and he was on day one of his secound 12 weeks of Anti PD 1 at Moffitt. He said he had a massive melanoma on his shoulder and arm….they wanted to cut it off…it was the size of a grapefruit and he couldn't wear a shirt right.. but he went elsewhere…he has Braf wild type and also did ipi….partial responses. Now he is doing Anti PD 1 and in 12 weeks  he is feeling fine, the one on his shoulder is flat and smaller, and many in liver and lungs have vanished… I am now in week 90 of 128 week trial at Moffitt Anti PD1 trial..

                                                      Laurie from maine
                                                      Participant

                                                        Hi Lynn,

                                                        I have been watching all your posts, I am sooo thrilled for you, such wonderful results.  I wonder do you know if Moffitt has openings still for their anti Pd-1, or expect any new spots to open up?  There are soo many stage 4 people who would benefit from them opening more spots. 

                                                        You arent having any side effects either is that right? 

                                                        Thank you for your support ๐Ÿ™‚

                                                        laurie from maine

                                                        Laurie from maine
                                                        Participant

                                                          Hi Lynn,

                                                          I have been watching all your posts, I am sooo thrilled for you, such wonderful results.  I wonder do you know if Moffitt has openings still for their anti Pd-1, or expect any new spots to open up?  There are soo many stage 4 people who would benefit from them opening more spots. 

                                                          You arent having any side effects either is that right? 

                                                          Thank you for your support ๐Ÿ™‚

                                                          laurie from maine

                                                          Laurie from maine
                                                          Participant

                                                            Hi Lynn,

                                                            I have been watching all your posts, I am sooo thrilled for you, such wonderful results.  I wonder do you know if Moffitt has openings still for their anti Pd-1, or expect any new spots to open up?  There are soo many stage 4 people who would benefit from them opening more spots. 

                                                            You arent having any side effects either is that right? 

                                                            Thank you for your support ๐Ÿ™‚

                                                            laurie from maine

                                                          LynnLuc
                                                          Participant

                                                            I hope your scans show your brain met is gone and you get into the Anti PD 1 trial. As a matter of fact I met a man last wednesday and he was on day one of his secound 12 weeks of Anti PD 1 at Moffitt. He said he had a massive melanoma on his shoulder and arm….they wanted to cut it off…it was the size of a grapefruit and he couldn't wear a shirt right.. but he went elsewhere…he has Braf wild type and also did ipi….partial responses. Now he is doing Anti PD 1 and in 12 weeks  he is feeling fine, the one on his shoulder is flat and smaller, and many in liver and lungs have vanished… I am now in week 90 of 128 week trial at Moffitt Anti PD1 trial..

                                                            LynnLuc
                                                            Participant

                                                              I hope your scans show your brain met is gone and you get into the Anti PD 1 trial. As a matter of fact I met a man last wednesday and he was on day one of his secound 12 weeks of Anti PD 1 at Moffitt. He said he had a massive melanoma on his shoulder and arm….they wanted to cut it off…it was the size of a grapefruit and he couldn't wear a shirt right.. but he went elsewhere…he has Braf wild type and also did ipi….partial responses. Now he is doing Anti PD 1 and in 12 weeks  he is feeling fine, the one on his shoulder is flat and smaller, and many in liver and lungs have vanished… I am now in week 90 of 128 week trial at Moffitt Anti PD1 trial..

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