› Forums › General Melanoma Community › Anti-PD1 is WORKING!!!!!!!!!!!!!
- This topic has 84 replies, 21 voices, and was last updated 11 years, 8 months ago by Erinlisay38.
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- June 8, 2012 at 2:22 am
After over a year of nothing but bad news and constant tumor progression, I just met with my Doctor at UCSF who was excited to tell me that I have had over a 30% tumor reduction from the ANTI-PD1 trial I am on. All of the results out of ASCO last weekend in Chicago about ANTI-PD1 have been very promising and have shown that responders continue to respond. I am so grateful for the groundbreaking research that is bringing these new immunotherapies to the forefront.
After over a year of nothing but bad news and constant tumor progression, I just met with my Doctor at UCSF who was excited to tell me that I have had over a 30% tumor reduction from the ANTI-PD1 trial I am on. All of the results out of ASCO last weekend in Chicago about ANTI-PD1 have been very promising and have shown that responders continue to respond. I am so grateful for the groundbreaking research that is bringing these new immunotherapies to the forefront. I am so thankful for my friends and family that have supported me. I am eternally thankful to my love, my partner, Lisa who, without her constant love and positive encouragement, I would be lost.
Today is a happy, happy day. I thank God he continues to give me more time to live each day to the fullest. I ask for God's blessings in your lives.With love and gratitude,Robert
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- June 8, 2012 at 2:50 am
That's fantastic Robert. How are the side effects (if any?) it's great to hear the Merck drug is working in your case (and presumably other cases); it's not so clear whether some of the other non-BMS ones are. A friend of mine back east is on the BMS trial and has been stable for almost a year now.
We go to the same clinic which makes your profile history very interesting reading. The UCSF Chancellor tweeted last week that anti-PD1 was "My pick for most promising
#ASCO12 anti-cancer approach given potential broad impact and risk-benefit."What is your NRAS mutation? Mine is G12A. Too bad the Pi3K didn't work for yours but it's awesome you're getting good results so far with the anti-PD1… may they continue!
-Kyle
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- June 8, 2012 at 2:50 am
That's fantastic Robert. How are the side effects (if any?) it's great to hear the Merck drug is working in your case (and presumably other cases); it's not so clear whether some of the other non-BMS ones are. A friend of mine back east is on the BMS trial and has been stable for almost a year now.
We go to the same clinic which makes your profile history very interesting reading. The UCSF Chancellor tweeted last week that anti-PD1 was "My pick for most promising
#ASCO12 anti-cancer approach given potential broad impact and risk-benefit."What is your NRAS mutation? Mine is G12A. Too bad the Pi3K didn't work for yours but it's awesome you're getting good results so far with the anti-PD1… may they continue!
-Kyle
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- June 8, 2012 at 5:32 am
Hi Kyle, side effects have been mainly some fatigue, a rash on my chest and neck, bone, joint, and some muscle pain. but nothing serious or difficult to handle. it's been pretty easy so far, especially when i compare it to the biochemo i did initially. my mutation is nras q61. I'm still floating after the news today and praying for continued shrinkage. take care. Robert
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- June 8, 2012 at 5:32 am
Hi Kyle, side effects have been mainly some fatigue, a rash on my chest and neck, bone, joint, and some muscle pain. but nothing serious or difficult to handle. it's been pretty easy so far, especially when i compare it to the biochemo i did initially. my mutation is nras q61. I'm still floating after the news today and praying for continued shrinkage. take care. Robert
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- June 8, 2012 at 5:32 am
Hi Kyle, side effects have been mainly some fatigue, a rash on my chest and neck, bone, joint, and some muscle pain. but nothing serious or difficult to handle. it's been pretty easy so far, especially when i compare it to the biochemo i did initially. my mutation is nras q61. I'm still floating after the news today and praying for continued shrinkage. take care. Robert
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- June 8, 2012 at 3:32 pm
Hi Kyle,
I have a friend also that is on merck pd1 trial in San Antonio. Unfortunaley, just after a few months, his thyroid numbers went crazy and now he takes meds to regulate his thyroid. The study nurse told him that a few other patients on Merck pd1 trial also are having thyroid problems. I read in Asco 2012 article published about BMS PD1 this was also an adverse side effect.
It is great news that your friend is still stable after 1 year. Is your friend NED?? How long did your friend take BMS drug??? Is he still taking the drug??? Is he on a "maintenance" program???
I appreciate you taking the time to answer my questions so that I can pass this information onto my friend in San Antonia.
Thanks again for the info about your friend.
MaryJo
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- June 8, 2012 at 3:32 pm
Hi Kyle,
I have a friend also that is on merck pd1 trial in San Antonio. Unfortunaley, just after a few months, his thyroid numbers went crazy and now he takes meds to regulate his thyroid. The study nurse told him that a few other patients on Merck pd1 trial also are having thyroid problems. I read in Asco 2012 article published about BMS PD1 this was also an adverse side effect.
It is great news that your friend is still stable after 1 year. Is your friend NED?? How long did your friend take BMS drug??? Is he still taking the drug??? Is he on a "maintenance" program???
I appreciate you taking the time to answer my questions so that I can pass this information onto my friend in San Antonia.
Thanks again for the info about your friend.
MaryJo
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- June 10, 2012 at 5:09 am
I am stage 4 and on BMS's Anti PD 1.. NED for over 2 years..my thyroid is also blown and I am on Synthroid…one piece of good news is that in previous IL-2 studies patients with the thryroid issues were shown to have durable responses…..so its a small price to pay. As we get older our thyroid typical fizzles out anyway…
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- June 10, 2012 at 5:09 am
I am stage 4 and on BMS's Anti PD 1.. NED for over 2 years..my thyroid is also blown and I am on Synthroid…one piece of good news is that in previous IL-2 studies patients with the thryroid issues were shown to have durable responses…..so its a small price to pay. As we get older our thyroid typical fizzles out anyway…
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- June 10, 2012 at 5:14 am
PS I have been on it since Fall 2010. I curently get scans and anti pd 1 infusion every 3 months. My trial is someone different because I also rec'd 72 peptide injections in the first two 12 week cycles ( getting both anti pd 1 and peptides every other week). My onc also told me of a man on the BMS anti pd 1 who did progress and then had a complete spontaneous regression and is NED….
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- June 10, 2012 at 5:14 am
PS I have been on it since Fall 2010. I curently get scans and anti pd 1 infusion every 3 months. My trial is someone different because I also rec'd 72 peptide injections in the first two 12 week cycles ( getting both anti pd 1 and peptides every other week). My onc also told me of a man on the BMS anti pd 1 who did progress and then had a complete spontaneous regression and is NED….
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- June 10, 2012 at 5:14 am
PS I have been on it since Fall 2010. I curently get scans and anti pd 1 infusion every 3 months. My trial is someone different because I also rec'd 72 peptide injections in the first two 12 week cycles ( getting both anti pd 1 and peptides every other week). My onc also told me of a man on the BMS anti pd 1 who did progress and then had a complete spontaneous regression and is NED….
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- June 10, 2012 at 5:09 am
I am stage 4 and on BMS's Anti PD 1.. NED for over 2 years..my thyroid is also blown and I am on Synthroid…one piece of good news is that in previous IL-2 studies patients with the thryroid issues were shown to have durable responses…..so its a small price to pay. As we get older our thyroid typical fizzles out anyway…
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- June 8, 2012 at 3:32 pm
Hi Kyle,
I have a friend also that is on merck pd1 trial in San Antonio. Unfortunaley, just after a few months, his thyroid numbers went crazy and now he takes meds to regulate his thyroid. The study nurse told him that a few other patients on Merck pd1 trial also are having thyroid problems. I read in Asco 2012 article published about BMS PD1 this was also an adverse side effect.
It is great news that your friend is still stable after 1 year. Is your friend NED?? How long did your friend take BMS drug??? Is he still taking the drug??? Is he on a "maintenance" program???
I appreciate you taking the time to answer my questions so that I can pass this information onto my friend in San Antonia.
Thanks again for the info about your friend.
MaryJo
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- June 8, 2012 at 2:50 am
That's fantastic Robert. How are the side effects (if any?) it's great to hear the Merck drug is working in your case (and presumably other cases); it's not so clear whether some of the other non-BMS ones are. A friend of mine back east is on the BMS trial and has been stable for almost a year now.
We go to the same clinic which makes your profile history very interesting reading. The UCSF Chancellor tweeted last week that anti-PD1 was "My pick for most promising
#ASCO12 anti-cancer approach given potential broad impact and risk-benefit."What is your NRAS mutation? Mine is G12A. Too bad the Pi3K didn't work for yours but it's awesome you're getting good results so far with the anti-PD1… may they continue!
-Kyle
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- June 8, 2012 at 11:09 am
That is awesome news Robert!! I was hoping you would post soon with something upbeat – David tried to get into the merk trial in Pittsburgh, but we discovered his brain mets. I'm hoping that maybe once they get those under control, he'll have a shot at getting into one of these.
It sounds as though we both had some prayers answered this week 🙂 Keep up the good work!!
All our best,
Maria n Dave
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- June 8, 2012 at 11:09 am
That is awesome news Robert!! I was hoping you would post soon with something upbeat – David tried to get into the merk trial in Pittsburgh, but we discovered his brain mets. I'm hoping that maybe once they get those under control, he'll have a shot at getting into one of these.
It sounds as though we both had some prayers answered this week 🙂 Keep up the good work!!
All our best,
Maria n Dave
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- June 8, 2012 at 11:09 am
That is awesome news Robert!! I was hoping you would post soon with something upbeat – David tried to get into the merk trial in Pittsburgh, but we discovered his brain mets. I'm hoping that maybe once they get those under control, he'll have a shot at getting into one of these.
It sounds as though we both had some prayers answered this week 🙂 Keep up the good work!!
All our best,
Maria n Dave
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- June 8, 2012 at 11:12 am
Such exciting news. Sending prayers for continued success!
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- June 8, 2012 at 12:10 pm
HOORAY!! Such wonderful news, thank you for sharing!!
I am hopeful with the great results people are having and the ASCO conference that will push the drug companies to open up more trials and give stage 4 people more options.
I also was in line to get on a PD-1 trial in Boston but was knocked out by a brain met. I am hopeful that once that is zapped I can find one that is open and will take me.
Keep us posted – and go out and CELEBRATE!!
laurie from maine 🙂
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- June 8, 2012 at 12:10 pm
HOORAY!! Such wonderful news, thank you for sharing!!
I am hopeful with the great results people are having and the ASCO conference that will push the drug companies to open up more trials and give stage 4 people more options.
I also was in line to get on a PD-1 trial in Boston but was knocked out by a brain met. I am hopeful that once that is zapped I can find one that is open and will take me.
Keep us posted – and go out and CELEBRATE!!
laurie from maine 🙂
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- June 8, 2012 at 12:10 pm
HOORAY!! Such wonderful news, thank you for sharing!!
I am hopeful with the great results people are having and the ASCO conference that will push the drug companies to open up more trials and give stage 4 people more options.
I also was in line to get on a PD-1 trial in Boston but was knocked out by a brain met. I am hopeful that once that is zapped I can find one that is open and will take me.
Keep us posted – and go out and CELEBRATE!!
laurie from maine 🙂
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- June 8, 2012 at 12:18 pm
Great news and so promising for the rest of us hoping to get into that trial. God Bless……
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- June 8, 2012 at 12:18 pm
Great news and so promising for the rest of us hoping to get into that trial. God Bless……
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- June 8, 2012 at 12:18 pm
Great news and so promising for the rest of us hoping to get into that trial. God Bless……
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- June 8, 2012 at 3:59 pm
Congratulations!!!!! Thanks so much for this wonderful news!!!
Hope
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- June 8, 2012 at 3:59 pm
Congratulations!!!!! Thanks so much for this wonderful news!!!
Hope
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- June 8, 2012 at 3:59 pm
Congratulations!!!!! Thanks so much for this wonderful news!!!
Hope
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- June 8, 2012 at 9:17 pm
Robert, Congrats!!!!!!
Keep an eye on the next few scans. Make sure that all (ALL) tumors are shrinking or have disappeared. If not, you may want do some IL-2 to finish the job. See my posts on combinatorial therapy at melanoma missionary.
Keep up the good job.
Jimmy B.
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- June 8, 2012 at 9:17 pm
Robert, Congrats!!!!!!
Keep an eye on the next few scans. Make sure that all (ALL) tumors are shrinking or have disappeared. If not, you may want do some IL-2 to finish the job. See my posts on combinatorial therapy at melanoma missionary.
Keep up the good job.
Jimmy B.
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- June 8, 2012 at 9:17 pm
Robert, Congrats!!!!!!
Keep an eye on the next few scans. Make sure that all (ALL) tumors are shrinking or have disappeared. If not, you may want do some IL-2 to finish the job. See my posts on combinatorial therapy at melanoma missionary.
Keep up the good job.
Jimmy B.
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- June 11, 2012 at 3:00 am
Sounds great! We are getting closer. I do have a couple of questions.
1.Has anyone been on a PD-1 trial that doe not require one to be HLA-02?
2. Has anyone heard any results for someone that is c-kit positive?
Thank you.
JerryfromFauq
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- June 11, 2012 at 3:00 am
Sounds great! We are getting closer. I do have a couple of questions.
1.Has anyone been on a PD-1 trial that doe not require one to be HLA-02?
2. Has anyone heard any results for someone that is c-kit positive?
Thank you.
JerryfromFauq
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- June 11, 2012 at 3:00 am
Sounds great! We are getting closer. I do have a couple of questions.
1.Has anyone been on a PD-1 trial that doe not require one to be HLA-02?
2. Has anyone heard any results for someone that is c-kit positive?
Thank you.
JerryfromFauq
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- June 11, 2012 at 4:56 am
Jerry, the Merck trial I'm on does not require the Hla typing. I believe the only Anti-pd1 trials that require hla typing are the ones that include a vaccine component. I haven't heard any results broken down by mutation, but data from Asco has shown that, so far, only tumors expressing the pd ligand have responded. I did not know this entering the trial, and my biopsy wasn't tested for it, so it seems I lucked out. check out the abstracts for anti-pd1 frommAsco, lots of good data.
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- June 11, 2012 at 4:56 am
Jerry, the Merck trial I'm on does not require the Hla typing. I believe the only Anti-pd1 trials that require hla typing are the ones that include a vaccine component. I haven't heard any results broken down by mutation, but data from Asco has shown that, so far, only tumors expressing the pd ligand have responded. I did not know this entering the trial, and my biopsy wasn't tested for it, so it seems I lucked out. check out the abstracts for anti-pd1 frommAsco, lots of good data.
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- June 11, 2012 at 4:56 am
Jerry, the Merck trial I'm on does not require the Hla typing. I believe the only Anti-pd1 trials that require hla typing are the ones that include a vaccine component. I haven't heard any results broken down by mutation, but data from Asco has shown that, so far, only tumors expressing the pd ligand have responded. I did not know this entering the trial, and my biopsy wasn't tested for it, so it seems I lucked out. check out the abstracts for anti-pd1 frommAsco, lots of good data.
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- September 23, 2012 at 8:53 pm
Great news Robert!
I am on the Anti-PD1 with Merck at UCLA. Here's hoping for similar results!
~K
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- April 9, 2013 at 7:14 pm
Hi I’m on bms pd1 trial in Boston just had my first 8 week scan and its bad news all tumors have progressed and new tumors have popped up ;( I get 2 more treatments then another scan in 6 weeks if tumors continue to grow I’m off the trial Not sure what’s next for me I already failed yervoy -
- April 9, 2013 at 7:14 pm
Hi I’m on bms pd1 trial in Boston just had my first 8 week scan and its bad news all tumors have progressed and new tumors have popped up ;( I get 2 more treatments then another scan in 6 weeks if tumors continue to grow I’m off the trial Not sure what’s next for me I already failed yervoy -
- April 9, 2013 at 7:14 pm
Hi I’m on bms pd1 trial in Boston just had my first 8 week scan and its bad news all tumors have progressed and new tumors have popped up ;( I get 2 more treatments then another scan in 6 weeks if tumors continue to grow I’m off the trial Not sure what’s next for me I already failed yervoy -
- April 9, 2013 at 7:15 pm
Hi I’m on bms pd1 trial in Boston just had my first 8 week scan and its bad news all tumors have progressed and new tumors have popped up ;( I get 2 more treatments then another scan in 6 weeks if tumors continue to grow I’m off the trial Not sure what’s next for me I already failed yervoy -
- April 15, 2013 at 1:45 am
Ok thanks I will do that as soon as I figure out how to lol I’d like to hear from others -
- April 15, 2013 at 1:45 am
Ok thanks I will do that as soon as I figure out how to lol I’d like to hear from others -
- April 15, 2013 at 1:45 am
Ok thanks I will do that as soon as I figure out how to lol I’d like to hear from others -
- April 9, 2013 at 7:15 pm
Hi I’m on bms pd1 trial in Boston just had my first 8 week scan and its bad news all tumors have progressed and new tumors have popped up ;( I get 2 more treatments then another scan in 6 weeks if tumors continue to grow I’m off the trial Not sure what’s next for me I already failed yervoy -
- April 9, 2013 at 7:15 pm
Hi I’m on bms pd1 trial in Boston just had my first 8 week scan and its bad news all tumors have progressed and new tumors have popped up ;( I get 2 more treatments then another scan in 6 weeks if tumors continue to grow I’m off the trial Not sure what’s next for me I already failed yervoy
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