› Forums › General Melanoma Community › Ugh! After 30 rounds of Keytruda, a new tumor has developed.
- This topic has 24 replies, 5 voices, and was last updated 8 years, 5 months ago by
_Paul_.
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- November 29, 2016 at 12:22 am
August 2014 diagnosed from completely healthy to stage 4.
Mets in lungs, liver, spleen, stomach, shoulder, adrenal glands, axilary glands.
Took Keytruda in January 2015 every 3 weeks.
Worked immediately and over course of 25 treatments and 5 CTs most everything disappered.
PET/CT just revealed that I have a new 3.6cm x 1cm tumor in small bowel. Wasn't there in July.
1) Was never a complete responder as CTs still showed small stuff even though most disappeared.
2) REALLY disappointed that it looks like one got passed the goalie and it spread to a new area I hadn't had mets before (small bowel)
3) Consult this week but assume plan will be to resect the small bowel and stitch it back up, removing mass.
4) I have TIL cells in storage at MD Anderson from 2 years ago. They'd like me to come back to harvest these new cells in bowel. Wonder if I can stay local (live in a major city with good cancer center) and have the T-cells shipped to them? I guess I'll find out at the consult.
5) Do you know of situations like mine? Keytruda works for 25+ treatments, responded incredibly well but not to the point of NED, then new sizable hypermetabolic tumor pops up?
Obviously fortunate to be a responder. New developments are frustrating like we all experience with new news. Thanks for any feedback and take care!
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- November 29, 2016 at 1:56 am
If you do a search on YouTube for dr. Jim Allison immune checkpoint blockade from Berkeley speech, you will get a video from several months ago where dr Allison talks about the current state of immunotherapy and there is a section where he talks about pd-1 drugs and progression after months of response. IT seems to be a real concern yet those that respond to Ipi long term do not relapse!!!! THe video is a little hard to follow at times do to the fact he is talking to researchers I believe. Best wishes!!!!!Ed
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- November 29, 2016 at 1:56 am
If you do a search on YouTube for dr. Jim Allison immune checkpoint blockade from Berkeley speech, you will get a video from several months ago where dr Allison talks about the current state of immunotherapy and there is a section where he talks about pd-1 drugs and progression after months of response. IT seems to be a real concern yet those that respond to Ipi long term do not relapse!!!! THe video is a little hard to follow at times do to the fact he is talking to researchers I believe. Best wishes!!!!!Ed
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- November 29, 2016 at 1:48 pm
Sorry about not giving you the link, I was on an ipad yesterday and I am sorry to say that my copy paste skills are very good. So here is the link to Dr.Allison and around the 21min mark he talks about long term responders to ipi and Pd-1. https://www.youtube.com/watch?v=r1Fp6C1xx6Q
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- November 29, 2016 at 1:48 pm
Sorry about not giving you the link, I was on an ipad yesterday and I am sorry to say that my copy paste skills are very good. So here is the link to Dr.Allison and around the 21min mark he talks about long term responders to ipi and Pd-1. https://www.youtube.com/watch?v=r1Fp6C1xx6Q
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- November 29, 2016 at 1:48 pm
Sorry about not giving you the link, I was on an ipad yesterday and I am sorry to say that my copy paste skills are very good. So here is the link to Dr.Allison and around the 21min mark he talks about long term responders to ipi and Pd-1. https://www.youtube.com/watch?v=r1Fp6C1xx6Q
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- November 29, 2016 at 1:56 am
If you do a search on YouTube for dr. Jim Allison immune checkpoint blockade from Berkeley speech, you will get a video from several months ago where dr Allison talks about the current state of immunotherapy and there is a section where he talks about pd-1 drugs and progression after months of response. IT seems to be a real concern yet those that respond to Ipi long term do not relapse!!!! THe video is a little hard to follow at times do to the fact he is talking to researchers I believe. Best wishes!!!!!Ed
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- November 29, 2016 at 2:20 am
From prior experience, MDA will only harvest on site.
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- November 29, 2016 at 3:13 pm
Don't forget about surgery options, I would get an opinion on that. I feel for you having to travel with a bowel problem. Here is a really good webinar on surgical options from expert at MDA: http://melanomainternational.org/webinar/2015/05/surgical-management-of-melanoma-a-2015-primer
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- November 29, 2016 at 3:13 pm
Don't forget about surgery options, I would get an opinion on that. I feel for you having to travel with a bowel problem. Here is a really good webinar on surgical options from expert at MDA: http://melanomainternational.org/webinar/2015/05/surgical-management-of-melanoma-a-2015-primer
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- November 29, 2016 at 3:13 pm
Don't forget about surgery options, I would get an opinion on that. I feel for you having to travel with a bowel problem. Here is a really good webinar on surgical options from expert at MDA: http://melanomainternational.org/webinar/2015/05/surgical-management-of-melanoma-a-2015-primer
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- November 29, 2016 at 9:49 pm
Hi Anonymous,
I am sorry to hear of your situation, and I can relate since it is similar to my own. I was on pembro for over a year. My mets had been stable almost the entire time, and my oncologist believed they were all just scar tissue. We discontinued the pembro but a scan 5 months later revealed progression.
We tried a phase 1 trial combining OX-40 with atezolizumab (anti-PD-L1). A scan 6 weeks later revealed significant disease proliferation (small intestine, heart lymph nodes, chest wall, liver, lung and sub-q's).
Ironically, my onc said the trial was for people that had progressed on anti-PD-1. But in my case it seems like it just pissed my cancer off.
So now I am flying back to Seattle, having just been to MDA for a second opinion. They are saying the same thing: TIL.
I hope this helps and I wish you the best.
– Paul
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- November 29, 2016 at 9:49 pm
Hi Anonymous,
I am sorry to hear of your situation, and I can relate since it is similar to my own. I was on pembro for over a year. My mets had been stable almost the entire time, and my oncologist believed they were all just scar tissue. We discontinued the pembro but a scan 5 months later revealed progression.
We tried a phase 1 trial combining OX-40 with atezolizumab (anti-PD-L1). A scan 6 weeks later revealed significant disease proliferation (small intestine, heart lymph nodes, chest wall, liver, lung and sub-q's).
Ironically, my onc said the trial was for people that had progressed on anti-PD-1. But in my case it seems like it just pissed my cancer off.
So now I am flying back to Seattle, having just been to MDA for a second opinion. They are saying the same thing: TIL.
I hope this helps and I wish you the best.
– Paul
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- November 29, 2016 at 9:49 pm
Hi Anonymous,
I am sorry to hear of your situation, and I can relate since it is similar to my own. I was on pembro for over a year. My mets had been stable almost the entire time, and my oncologist believed they were all just scar tissue. We discontinued the pembro but a scan 5 months later revealed progression.
We tried a phase 1 trial combining OX-40 with atezolizumab (anti-PD-L1). A scan 6 weeks later revealed significant disease proliferation (small intestine, heart lymph nodes, chest wall, liver, lung and sub-q's).
Ironically, my onc said the trial was for people that had progressed on anti-PD-1. But in my case it seems like it just pissed my cancer off.
So now I am flying back to Seattle, having just been to MDA for a second opinion. They are saying the same thing: TIL.
I hope this helps and I wish you the best.
– Paul
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- December 8, 2016 at 10:40 am
My husband was diagnosed also from healthy to stage 4 in march 2012. He did brain radiation and yervoy, which kept him stable for 5 months then had surgery for tumor in small bowel. Then we got on the anti-pd1 trial in february 2013 and he got i believe 60 or more doses when two new tumors showed up on his left and right thighs. We chose to go into another trial combining anti-pd1 with dynavex’s sd-101. He just had scans so we will know soon results, but since we can feel the new tumors they have gotten smaller since starting. Side effects are flu like. Fevers chills fatigue not feeling well, which is a bummer considering on anti-pd1 alone he had no side effects except his adrenal gland stopped working. But it has seemed to induce another immune response so far.Hes only the 5th person at u.c.l.a. on this trial. -
- December 8, 2016 at 10:40 am
My husband was diagnosed also from healthy to stage 4 in march 2012. He did brain radiation and yervoy, which kept him stable for 5 months then had surgery for tumor in small bowel. Then we got on the anti-pd1 trial in february 2013 and he got i believe 60 or more doses when two new tumors showed up on his left and right thighs. We chose to go into another trial combining anti-pd1 with dynavex’s sd-101. He just had scans so we will know soon results, but since we can feel the new tumors they have gotten smaller since starting. Side effects are flu like. Fevers chills fatigue not feeling well, which is a bummer considering on anti-pd1 alone he had no side effects except his adrenal gland stopped working. But it has seemed to induce another immune response so far.Hes only the 5th person at u.c.l.a. on this trial. -
- December 8, 2016 at 10:40 am
My husband was diagnosed also from healthy to stage 4 in march 2012. He did brain radiation and yervoy, which kept him stable for 5 months then had surgery for tumor in small bowel. Then we got on the anti-pd1 trial in february 2013 and he got i believe 60 or more doses when two new tumors showed up on his left and right thighs. We chose to go into another trial combining anti-pd1 with dynavex’s sd-101. He just had scans so we will know soon results, but since we can feel the new tumors they have gotten smaller since starting. Side effects are flu like. Fevers chills fatigue not feeling well, which is a bummer considering on anti-pd1 alone he had no side effects except his adrenal gland stopped working. But it has seemed to induce another immune response so far.Hes only the 5th person at u.c.l.a. on this trial.
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