Forum Replies Created
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- March 1, 2017 at 12:29 pm
Hi there. My husband has been getting keytruda or mk-3475 as we knew it before it was approved for 4 years now, every 3 weeks as of february 1st 2017. Not sure how many injections, but you could do the math if you want. After about 3 1/2 years a couple new tumors popped up and he entered a new clinical trial combining keytruda with sd-101 injected into a single tumor and has acheived stable disease since. Best wishes.
Amanda. -
- January 23, 2017 at 10:57 am
Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.Note that he was only getting the anti pd1, but had previously received yervoy.
About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.
Best wishes and i hope the best.
Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.
-Amanda-
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- January 23, 2017 at 10:57 am
Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.Note that he was only getting the anti pd1, but had previously received yervoy.
About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.
Best wishes and i hope the best.
Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.
-Amanda-
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- January 23, 2017 at 10:57 am
Hi. My husband was part of the stage 3 study of anti pd1 and had initial shrinkage of all tumors, some more than others, some gone. Then after probably 6 months to a year im not sure they all became stable with no shrinkage or new growths. He contined being stable for another 2 1/2 years or so. So yes stable is good and means the immune sysyem is keeping the cancer in check.Note that he was only getting the anti pd1, but had previously received yervoy.
About 4 months ago he had 2 new tumors pop up on thighs and one on chest. He was then added to a trial combining anti pd1 with dynavex sd-101 which is an agent injected directly into one tumor to innitiate an immune response. So far his immune system has revved back up and has again shrunk some tumors with some stable. No new growths so far.
Best wishes and i hope the best.
Also, march 9th of this year will mark 5 years since he was diagnosed (stage 4 right off the bat). Dont ever lose hope. There are long term survivors out there.
-Amanda-
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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. -
- September 6, 2016 at 8:00 am
My boyfriend who’s been on pd1 for 3 1/2 years also has to take cortisol replacement as his adrenal glands stopped working. He also has issues with getting fatigued when he’s stressed. It’s all trial and error when finding the right dose. And I will say there’s just certain things he knows not to do now to not stress the body and go into adrenal fatigue. It’s all about accepting your new normal and learning to live the best you can with what you have i guess. Best wishes for you to get that under control. Also noted that he cannot work as it’s just too stressful and tiring. -
- September 6, 2016 at 8:00 am
My boyfriend who’s been on pd1 for 3 1/2 years also has to take cortisol replacement as his adrenal glands stopped working. He also has issues with getting fatigued when he’s stressed. It’s all trial and error when finding the right dose. And I will say there’s just certain things he knows not to do now to not stress the body and go into adrenal fatigue. It’s all about accepting your new normal and learning to live the best you can with what you have i guess. Best wishes for you to get that under control. Also noted that he cannot work as it’s just too stressful and tiring. -
- September 20, 2016 at 9:20 am
Thanks for the info celest!! And Anna he has Mets in lungs liver adrenal gland and chest wall and now two new tumors in each thigh. He initially had tumor shrinkage and then stabilized for a few years while continuing to get the treatment. He was part of the clinical trial so he basically got to keep getting it as long as he was responding.He had a pnumonia quite a few times and the last time he was in hospital for 13 days from pnumonia turned sepsis. When he was discharged we realized he had the new tumors on the thigh. Hopefully this combo will boost the immune system back up to fight this beast. I will keep you all updated on his results.
Amanda
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- September 20, 2016 at 9:20 am
Thanks for the info celest!! And Anna he has Mets in lungs liver adrenal gland and chest wall and now two new tumors in each thigh. He initially had tumor shrinkage and then stabilized for a few years while continuing to get the treatment. He was part of the clinical trial so he basically got to keep getting it as long as he was responding.He had a pnumonia quite a few times and the last time he was in hospital for 13 days from pnumonia turned sepsis. When he was discharged we realized he had the new tumors on the thigh. Hopefully this combo will boost the immune system back up to fight this beast. I will keep you all updated on his results.
Amanda
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- September 20, 2016 at 9:20 am
Thanks for the info celest!! And Anna he has Mets in lungs liver adrenal gland and chest wall and now two new tumors in each thigh. He initially had tumor shrinkage and then stabilized for a few years while continuing to get the treatment. He was part of the clinical trial so he basically got to keep getting it as long as he was responding.He had a pnumonia quite a few times and the last time he was in hospital for 13 days from pnumonia turned sepsis. When he was discharged we realized he had the new tumors on the thigh. Hopefully this combo will boost the immune system back up to fight this beast. I will keep you all updated on his results.
Amanda
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