24 year old Daughter with liver tumor now going to Keytruda

That's great the the tumour has shrunk and no new mets. Many ppl have a loss of thyroid function after keytruda. With me it took about 6 infusions till I lost it completely and now I take thyroxin every day. No big deal. My tumour shrunk by half in the first three months in keytruda and halved again the second three months. Now I have a side effect that no one else seems to have had. Pain in my torso which might be inflammation of the synovial membranes and had to go off keytruda but most ppl on this forum seem to have tolerated keytruda really well. Good luck. I hope it shrinks down quickly to a resectable size !

anne-Louise 

That's great the the tumour has shrunk and no new mets. Many ppl have a loss of thyroid function after keytruda. With me it took about 6 infusions till I lost it completely and now I take thyroxin every day. No big deal. My tumour shrunk by half in the first three months in keytruda and halved again the second three months. Now I have a side effect that no one else seems to have had. Pain in my torso which might be inflammation of the synovial membranes and had to go off keytruda but most ppl on this forum seem to have tolerated keytruda really well. Good luck. I hope it shrinks down quickly to a resectable size !

anne-Louise 

That's great the the tumour has shrunk and no new mets. Many ppl have a loss of thyroid function after keytruda. With me it took about 6 infusions till I lost it completely and now I take thyroxin every day. No big deal. My tumour shrunk by half in the first three months in keytruda and halved again the second three months. Now I have a side effect that no one else seems to have had. Pain in my torso which might be inflammation of the synovial membranes and had to go off keytruda but most ppl on this forum seem to have tolerated keytruda really well. Good luck. I hope it shrinks down quickly to a resectable size !

anne-Louise 

Hi Jacque,

'Stable' and 'shrinkage' are both nice words to hear. It is so great that your daughter has been hearing them. 

FWIW as far as side effects with anti-PD1, I have been in a combo trial of Opdivo and a so-called "anti-KIR" drug for over a year. I've had 34 infusions of Opdivo so far (and 17 of the other drug). Knock on wood, the side effects have all been tolerable and "low-grade" in the scheme of things, and have lessened over time.

In my own treatment plan I have been aiming for long-term systemic treatment, rather than shrinking a tumor in preparation for resection. BUT in my case the main tumor being treated is smaller and in a much less important place. I want my oncologist to be a good oddsmaker on picking from different treatments, given the particular situation. Wondering if her doctors discussed the possible advantages and disadvantages of shotting for a long-term anti-PD1/combo trial? 

Good wishes to her, and may the treatments keep on getting her to where you want them to go. 

– Kyle

Hi Jacque,

'Stable' and 'shrinkage' are both nice words to hear. It is so great that your daughter has been hearing them. 

FWIW as far as side effects with anti-PD1, I have been in a combo trial of Opdivo and a so-called "anti-KIR" drug for over a year. I've had 34 infusions of Opdivo so far (and 17 of the other drug). Knock on wood, the side effects have all been tolerable and "low-grade" in the scheme of things, and have lessened over time.

In my own treatment plan I have been aiming for long-term systemic treatment, rather than shrinking a tumor in preparation for resection. BUT in my case the main tumor being treated is smaller and in a much less important place. I want my oncologist to be a good oddsmaker on picking from different treatments, given the particular situation. Wondering if her doctors discussed the possible advantages and disadvantages of shotting for a long-term anti-PD1/combo trial? 

Good wishes to her, and may the treatments keep on getting her to where you want them to go. 

– Kyle

Hi Jacque,

'Stable' and 'shrinkage' are both nice words to hear. It is so great that your daughter has been hearing them. 

FWIW as far as side effects with anti-PD1, I have been in a combo trial of Opdivo and a so-called "anti-KIR" drug for over a year. I've had 34 infusions of Opdivo so far (and 17 of the other drug). Knock on wood, the side effects have all been tolerable and "low-grade" in the scheme of things, and have lessened over time.

In my own treatment plan I have been aiming for long-term systemic treatment, rather than shrinking a tumor in preparation for resection. BUT in my case the main tumor being treated is smaller and in a much less important place. I want my oncologist to be a good oddsmaker on picking from different treatments, given the particular situation. Wondering if her doctors discussed the possible advantages and disadvantages of shotting for a long-term anti-PD1/combo trial? 

Good wishes to her, and may the treatments keep on getting her to where you want them to go. 

– Kyle

17 doses of keytruda with almost no side affects. Used to get mild fevers up to 101 but not anymore.

Artie

17 doses of keytruda with almost no side affects. Used to get mild fevers up to 101 but not anymore.

Artie

17 doses of keytruda with almost no side affects. Used to get mild fevers up to 101 but not anymore.

Artie

Thought I'd chime in as I sit here eating my lunch. I've been on Keytruda for nearly a year. I have had no recognizable side effects, and in contrast to what the first reply said, my thyroid numbers have actually been increasing slowly, not decreasing. I feel good and my tumors continue to shrink (though not as dramatically as they did at first). I was a pretty fast responder, but there is individual variation to response time, so keep that in mind. 

The infusion times are nice and short (about 45 min), which I appreciate. Initially however I did get a little sleepy after the doses, but this could just as likely have been because we were driving 6 hours (one way) to get it at the time, and travel makes me tired. Also, in my case, many of the tumors grew rapidly (over a 24-48 hr period) and stayed enlarged for 3-4 days just before they began to shrink. I know this because I had a lot of tumors under my skin that I could feel easily. When they enlarged they would get red and could be painful. I have no idea if the same thing happened to the tumors in my chest and abdomen, but I suspect it might have, at least for some, since I did have some abdominal pain for a few days after the third (I think) dose. I mention this not to frighten you, but to make you aware that it may happen. I don't know what your daughter's scan schedule is, but if they scan her shorly after or even mid way through her 6 doses, try not to panic if the tumor looks like it grew. If that happens, give it a week or 2 and scan again to compare. Last fall the same thing happened (apparently) to one of the tumors in my brain- it "grew" significantly, but I had no idea it was doing anything (no symptoms at all). I had a craniotomy to take it out, but the pathology report showed that there were no live cells in the mass, so likely if they had left it in there it would have shrunk down like the rest of my tumors. Still glad I got it out though. 

I hope your daughter has as rapid and as good a response as I have had. 

Best of luck to you

Thought I'd chime in as I sit here eating my lunch. I've been on Keytruda for nearly a year. I have had no recognizable side effects, and in contrast to what the first reply said, my thyroid numbers have actually been increasing slowly, not decreasing. I feel good and my tumors continue to shrink (though not as dramatically as they did at first). I was a pretty fast responder, but there is individual variation to response time, so keep that in mind. 

The infusion times are nice and short (about 45 min), which I appreciate. Initially however I did get a little sleepy after the doses, but this could just as likely have been because we were driving 6 hours (one way) to get it at the time, and travel makes me tired. Also, in my case, many of the tumors grew rapidly (over a 24-48 hr period) and stayed enlarged for 3-4 days just before they began to shrink. I know this because I had a lot of tumors under my skin that I could feel easily. When they enlarged they would get red and could be painful. I have no idea if the same thing happened to the tumors in my chest and abdomen, but I suspect it might have, at least for some, since I did have some abdominal pain for a few days after the third (I think) dose. I mention this not to frighten you, but to make you aware that it may happen. I don't know what your daughter's scan schedule is, but if they scan her shorly after or even mid way through her 6 doses, try not to panic if the tumor looks like it grew. If that happens, give it a week or 2 and scan again to compare. Last fall the same thing happened (apparently) to one of the tumors in my brain- it "grew" significantly, but I had no idea it was doing anything (no symptoms at all). I had a craniotomy to take it out, but the pathology report showed that there were no live cells in the mass, so likely if they had left it in there it would have shrunk down like the rest of my tumors. Still glad I got it out though. 

I hope your daughter has as rapid and as good a response as I have had. 

Best of luck to you

Thought I'd chime in as I sit here eating my lunch. I've been on Keytruda for nearly a year. I have had no recognizable side effects, and in contrast to what the first reply said, my thyroid numbers have actually been increasing slowly, not decreasing. I feel good and my tumors continue to shrink (though not as dramatically as they did at first). I was a pretty fast responder, but there is individual variation to response time, so keep that in mind. 

The infusion times are nice and short (about 45 min), which I appreciate. Initially however I did get a little sleepy after the doses, but this could just as likely have been because we were driving 6 hours (one way) to get it at the time, and travel makes me tired. Also, in my case, many of the tumors grew rapidly (over a 24-48 hr period) and stayed enlarged for 3-4 days just before they began to shrink. I know this because I had a lot of tumors under my skin that I could feel easily. When they enlarged they would get red and could be painful. I have no idea if the same thing happened to the tumors in my chest and abdomen, but I suspect it might have, at least for some, since I did have some abdominal pain for a few days after the third (I think) dose. I mention this not to frighten you, but to make you aware that it may happen. I don't know what your daughter's scan schedule is, but if they scan her shorly after or even mid way through her 6 doses, try not to panic if the tumor looks like it grew. If that happens, give it a week or 2 and scan again to compare. Last fall the same thing happened (apparently) to one of the tumors in my brain- it "grew" significantly, but I had no idea it was doing anything (no symptoms at all). I had a craniotomy to take it out, but the pathology report showed that there were no live cells in the mass, so likely if they had left it in there it would have shrunk down like the rest of my tumors. Still glad I got it out though. 

I hope your daughter has as rapid and as good a response as I have had. 

Best of luck to you