› Forums › General Melanoma Community › failed testing to get on PD-1 trial :(
- This topic has 27 replies, 6 voices, and was last updated 12 years, 7 months ago by
Gene_S.
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- June 20, 2012 at 12:43 pm
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
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- June 20, 2012 at 12:57 pm
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….
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- June 20, 2012 at 2:03 pm
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.
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- June 20, 2012 at 9:54 pm
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 -
- June 21, 2012 at 11:45 pm
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
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- June 21, 2012 at 11:45 pm
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
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- June 22, 2012 at 12:48 am
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 -
- June 22, 2012 at 12:48 am
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 -
- June 22, 2012 at 12:48 am
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 -
- June 24, 2012 at 5:22 pm
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
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- June 24, 2012 at 5:22 pm
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
-
- June 24, 2012 at 5:22 pm
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
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- June 21, 2012 at 11:45 pm
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
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- June 20, 2012 at 9:54 pm
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 -
- June 20, 2012 at 9:54 pm
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 -
- June 20, 2012 at 2:03 pm
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.
-
- June 20, 2012 at 2:03 pm
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.
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- June 21, 2012 at 11:28 pm
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
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- June 21, 2012 at 11:28 pm
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
-
- June 21, 2012 at 11:28 pm
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
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- June 21, 2012 at 12:43 am
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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- June 21, 2012 at 11:51 pm
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 ๐
laurie from maine
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- June 21, 2012 at 11:51 pm
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 ๐
laurie from maine
-
- June 21, 2012 at 11:51 pm
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 ๐
laurie from maine
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- June 21, 2012 at 12:43 am
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..
-
- June 21, 2012 at 12:43 am
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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