› Forums › General Melanoma Community › Stopping Keytruda does it still keep working?
- This topic has 9 replies, 3 voices, and was last updated 8 years, 7 months ago by
Daisyduke.
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- May 4, 2015 at 7:07 am
Hi All,
I recently posted about a strange side effect from Keytruda that I started having about 6-7 months into treatment. Cramping and soreness all over my neck and torso with severe movement restriction. My newest scans showed a further shrinking of the tumour in my lung to 3 cm x 1 cm and my bloods were all good although the inflammation markers were a little high.
I have been put on steroids for a week- 25 mg prednisone and it improved a lot. Now we are weaning me off 5 mg per week to see how I go. We will not continue with the Pembro until we have it under control and i suppose there is a chance that they may not put me back on unless the cancer starts to grow again… scans again in 3 months. My doctors said there are cases where the drug keeps working even after it has been stopped and they are hoping that in my case.
Has anyone else had to stop Keytruda and go onto sterooids because of side effects, and did your cancer start to grow again after an initial good response? How long till it started to grow again?
Thanks
Anne-Louise
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- May 6, 2015 at 1:43 am
Hi Anne-Louise,
I haven't had to stop keytruda because of side effects, but I am on keytruda. My doc has said that the changes that keytruda makes to your immune system are permanent. No going back. But Mel is a tricky devil, and can change to defeat keytruda, causing Mel to return. So the question is really what do we need to do so that Mel can't trick keytruda. Unfortunately, no one can tell you whether or not keytruda got it all, so no one can say if you'll recur.
i seem to remember something like if you're going to recur after keytruda, you'll do it sooner (within 2 years) rather than later. But I could be wrong.
peace,
Julie
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- May 6, 2015 at 1:43 am
Hi Anne-Louise,
I haven't had to stop keytruda because of side effects, but I am on keytruda. My doc has said that the changes that keytruda makes to your immune system are permanent. No going back. But Mel is a tricky devil, and can change to defeat keytruda, causing Mel to return. So the question is really what do we need to do so that Mel can't trick keytruda. Unfortunately, no one can tell you whether or not keytruda got it all, so no one can say if you'll recur.
i seem to remember something like if you're going to recur after keytruda, you'll do it sooner (within 2 years) rather than later. But I could be wrong.
peace,
Julie
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- May 6, 2015 at 1:43 am
Hi Anne-Louise,
I haven't had to stop keytruda because of side effects, but I am on keytruda. My doc has said that the changes that keytruda makes to your immune system are permanent. No going back. But Mel is a tricky devil, and can change to defeat keytruda, causing Mel to return. So the question is really what do we need to do so that Mel can't trick keytruda. Unfortunately, no one can tell you whether or not keytruda got it all, so no one can say if you'll recur.
i seem to remember something like if you're going to recur after keytruda, you'll do it sooner (within 2 years) rather than later. But I could be wrong.
peace,
Julie
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- May 6, 2015 at 8:20 pm
I haven't been keeping up as well as I probably should, but I am also on Pembro (for nearly a year). I have not had any side effects that I can attirbute to the infusions and am slated to stay on the drug at least until the end of this year unless things stop shrinking and start growing. We'll re-evaluate in the fall.
I'm not sure anyone really knows for sure how long it might keep working after you stop. It's too new a therapy. It's probably variable person to person and dependant on response. I do know that if things start growing after people stop they may respond again if they are put back on the drug. The thought is (or was, at least) that once your immune system has figured out how to recognize the tumors that it continues to do so. The problem with Melanoma is that it has a tendency to mutate and look different to the immune system (possibly why you can try again if it comes back after you stop).
Probably not a very helpful post, sorry.
I hope it keeps working for you and you never have to deal with this horrible monster again!
-Eva
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- October 27, 2015 at 1:06 pm
Eva
This is encouraging news for me, I went for several opinions and was told to watch my Melanoma and wait for 2 months for more CAT Scans before I possibly start my Keytruda which is making me very nervous.
I would rather start my treatment sooner rather than later being that I am Stage IV with Metastic Melanoma. I was told that I would have to be on therapy for the rest of my life
Your story sound so encouraging, I know everyone handle the drug differently, but being that you had no side effects and that you are only on the drug for a year gives me hope.
I am hoping with healthy eating and a change of lifestyle along with drug therap,y that my scans with continue to show no signs of cancer.
I also did not know that once if you are able to stop therapy, that you can start up again, is that correct?
I am really praying,soul searching and hoping to make the right decision very soon for me and my family.
This support group rally helps a lot.
Thanks.,
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- October 27, 2015 at 1:06 pm
Eva
This is encouraging news for me, I went for several opinions and was told to watch my Melanoma and wait for 2 months for more CAT Scans before I possibly start my Keytruda which is making me very nervous.
I would rather start my treatment sooner rather than later being that I am Stage IV with Metastic Melanoma. I was told that I would have to be on therapy for the rest of my life
Your story sound so encouraging, I know everyone handle the drug differently, but being that you had no side effects and that you are only on the drug for a year gives me hope.
I am hoping with healthy eating and a change of lifestyle along with drug therap,y that my scans with continue to show no signs of cancer.
I also did not know that once if you are able to stop therapy, that you can start up again, is that correct?
I am really praying,soul searching and hoping to make the right decision very soon for me and my family.
This support group rally helps a lot.
Thanks.,
-
- October 27, 2015 at 1:06 pm
Eva
This is encouraging news for me, I went for several opinions and was told to watch my Melanoma and wait for 2 months for more CAT Scans before I possibly start my Keytruda which is making me very nervous.
I would rather start my treatment sooner rather than later being that I am Stage IV with Metastic Melanoma. I was told that I would have to be on therapy for the rest of my life
Your story sound so encouraging, I know everyone handle the drug differently, but being that you had no side effects and that you are only on the drug for a year gives me hope.
I am hoping with healthy eating and a change of lifestyle along with drug therap,y that my scans with continue to show no signs of cancer.
I also did not know that once if you are able to stop therapy, that you can start up again, is that correct?
I am really praying,soul searching and hoping to make the right decision very soon for me and my family.
This support group rally helps a lot.
Thanks.,
-
- May 6, 2015 at 8:20 pm
I haven't been keeping up as well as I probably should, but I am also on Pembro (for nearly a year). I have not had any side effects that I can attirbute to the infusions and am slated to stay on the drug at least until the end of this year unless things stop shrinking and start growing. We'll re-evaluate in the fall.
I'm not sure anyone really knows for sure how long it might keep working after you stop. It's too new a therapy. It's probably variable person to person and dependant on response. I do know that if things start growing after people stop they may respond again if they are put back on the drug. The thought is (or was, at least) that once your immune system has figured out how to recognize the tumors that it continues to do so. The problem with Melanoma is that it has a tendency to mutate and look different to the immune system (possibly why you can try again if it comes back after you stop).
Probably not a very helpful post, sorry.
I hope it keeps working for you and you never have to deal with this horrible monster again!
-Eva
-
- May 6, 2015 at 8:20 pm
I haven't been keeping up as well as I probably should, but I am also on Pembro (for nearly a year). I have not had any side effects that I can attirbute to the infusions and am slated to stay on the drug at least until the end of this year unless things stop shrinking and start growing. We'll re-evaluate in the fall.
I'm not sure anyone really knows for sure how long it might keep working after you stop. It's too new a therapy. It's probably variable person to person and dependant on response. I do know that if things start growing after people stop they may respond again if they are put back on the drug. The thought is (or was, at least) that once your immune system has figured out how to recognize the tumors that it continues to do so. The problem with Melanoma is that it has a tendency to mutate and look different to the immune system (possibly why you can try again if it comes back after you stop).
Probably not a very helpful post, sorry.
I hope it keeps working for you and you never have to deal with this horrible monster again!
-Eva
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