› Forums › General Melanoma Community › New mets under Keytruda (anti-PD1)? (first dose)
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f2froit.
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- February 25, 2016 at 7:21 pm
Hi, my wife is currently using this drug to deal with her Sarcoma. I know this is a Melanoma forum, but in her case, she cas a clear cell sarcoma, which tends to be rather close… sadly, even in functionality, its currently running rampant on her lymph system (many nodes invaded throughout her body).
Last september she had a PET which showed the primary tumor (ankle) and mets on the lymphs of her thigh; both areas were operated with clear margins, but shortly after we started having a few mets at first and later… many 🙁
The good thing is that as of last PET the only compromise were apparently several nodes and maybe some muscle, but no main organ or the like.We discussed options and although an anti-PD1 wasnt on the table, we managed to get it and give it as the first systemic treatment.
After three weeks (tomorrow second dose), I do think that some tumors on her back are going smaller (the bigger ones), but at the same time, we are finding multiple bulges where we do think that there wasnt anything there. I know that this might be consistent with Keytruda making the tumors to be like inflamed, but some of them are really, really small… so, going to the first question, did anyone DID had new mets under the medication and it worked nonetheless?
Another question, some of this "inflamed" tumors are like more sensitive, making my wife to be a little in pain because every position makes her to be inconfortable, is this common too?
And lastly, she isnt having almost no side effects, except last point and sometimes some tiredness, I was hoping for some as an indication of something happening (rash in tumor site, etc), which are your stories on this regards?
Well, some big thanks in advance!!
Ariel
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- February 25, 2016 at 8:15 pm
Hello – I'm sorry you're dealing with this. I'm glad you're there to support you wife.
You asked a few questions.
1) New mets – I don't think I experienced that. I had a relatively low burden, but a lot of activity in my bones, so they had a hard time pinning it all down. It's possible. Outside of that, I can't offer a lot of insight.
2) I did ipilumumab first and that drastically cut down my pain. Unfortunately, again, I can't offer much here.
3) This I can answer. There is also another user on here (Bubbles) who's blog explains this in some detail (at least for melanoma patients). Side effects =/= response. When I first started Keytruda, I had practically no side effects. At different times I've had limited rashes, joint pain and tiredness. I actually get a lot less tired after treatment than I did initially. But my doctors list me, and I would agree, as tolerating "very well." To that end, I'm presently NED (or NEAD, depending on who you ask). So side effects are important to manage if you have them, but not important to be concerned if you don't.
Best of luck!
-Justin
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- February 25, 2016 at 8:15 pm
Hello – I'm sorry you're dealing with this. I'm glad you're there to support you wife.
You asked a few questions.
1) New mets – I don't think I experienced that. I had a relatively low burden, but a lot of activity in my bones, so they had a hard time pinning it all down. It's possible. Outside of that, I can't offer a lot of insight.
2) I did ipilumumab first and that drastically cut down my pain. Unfortunately, again, I can't offer much here.
3) This I can answer. There is also another user on here (Bubbles) who's blog explains this in some detail (at least for melanoma patients). Side effects =/= response. When I first started Keytruda, I had practically no side effects. At different times I've had limited rashes, joint pain and tiredness. I actually get a lot less tired after treatment than I did initially. But my doctors list me, and I would agree, as tolerating "very well." To that end, I'm presently NED (or NEAD, depending on who you ask). So side effects are important to manage if you have them, but not important to be concerned if you don't.
Best of luck!
-Justin
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- February 25, 2016 at 8:15 pm
Hello – I'm sorry you're dealing with this. I'm glad you're there to support you wife.
You asked a few questions.
1) New mets – I don't think I experienced that. I had a relatively low burden, but a lot of activity in my bones, so they had a hard time pinning it all down. It's possible. Outside of that, I can't offer a lot of insight.
2) I did ipilumumab first and that drastically cut down my pain. Unfortunately, again, I can't offer much here.
3) This I can answer. There is also another user on here (Bubbles) who's blog explains this in some detail (at least for melanoma patients). Side effects =/= response. When I first started Keytruda, I had practically no side effects. At different times I've had limited rashes, joint pain and tiredness. I actually get a lot less tired after treatment than I did initially. But my doctors list me, and I would agree, as tolerating "very well." To that end, I'm presently NED (or NEAD, depending on who you ask). So side effects are important to manage if you have them, but not important to be concerned if you don't.
Best of luck!
-Justin
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- February 27, 2016 at 12:29 pm
Hi Ariel, I'm stage 4 and had my first infusion of pembrolizumab on January 20th. I did experience some pseudo progression ( a common side effect). An existing subcutaneous met grew and became tender, also what I thought was going to be a new met appeared a couple of inches away. It presented as a small round hard area surrounded by reddish skin. However, it subsided and disappeared within a couple of days. I also experienced 5 days of side effects, headaches, fatigues, pins and needles in hands and prostitis. My onc says I had been overdoing things. I'd been doing daily spin classes and brisk walking for an hour a day. Once I cut back on the spin classes I've had no side effects despite having my second pembrolizumab . The subcutaneous met on my chest now feels smaller so I'm hoping the immunotherapy is working . Best of luck to your wife.
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- February 27, 2016 at 12:29 pm
Hi Ariel, I'm stage 4 and had my first infusion of pembrolizumab on January 20th. I did experience some pseudo progression ( a common side effect). An existing subcutaneous met grew and became tender, also what I thought was going to be a new met appeared a couple of inches away. It presented as a small round hard area surrounded by reddish skin. However, it subsided and disappeared within a couple of days. I also experienced 5 days of side effects, headaches, fatigues, pins and needles in hands and prostitis. My onc says I had been overdoing things. I'd been doing daily spin classes and brisk walking for an hour a day. Once I cut back on the spin classes I've had no side effects despite having my second pembrolizumab . The subcutaneous met on my chest now feels smaller so I'm hoping the immunotherapy is working . Best of luck to your wife.
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- February 27, 2016 at 12:29 pm
Hi Ariel, I'm stage 4 and had my first infusion of pembrolizumab on January 20th. I did experience some pseudo progression ( a common side effect). An existing subcutaneous met grew and became tender, also what I thought was going to be a new met appeared a couple of inches away. It presented as a small round hard area surrounded by reddish skin. However, it subsided and disappeared within a couple of days. I also experienced 5 days of side effects, headaches, fatigues, pins and needles in hands and prostitis. My onc says I had been overdoing things. I'd been doing daily spin classes and brisk walking for an hour a day. Once I cut back on the spin classes I've had no side effects despite having my second pembrolizumab . The subcutaneous met on my chest now feels smaller so I'm hoping the immunotherapy is working . Best of luck to your wife.
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- February 27, 2016 at 2:52 pm
Hi Ariel,
Sorry you and your wife are having to deal with all this. I did Nivolumab/Opdivo, an anti-PD1 product very like Pembrolizumab/Keytruda, for 2 1/2 years, starting in 2010, after Stage IV (brain and lung mets) melanoma. I remain NED today. Here is an older post on anti-PD1 generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Here is a newer one with melanoma experts discussing side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
With immunotherapy, researchers for melanoma all agree….you have to give it time. I recently posted a graph showing response times. The median time is 10-12 weeks before attaining a response….though some gain responses long after that. Addtionally, it is also recognized that some tumors enlarge initially due to the inflammatory response that immunotherapy initiates.
Hope this helps. Wishing you both my best. Celeste
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- February 27, 2016 at 2:52 pm
Hi Ariel,
Sorry you and your wife are having to deal with all this. I did Nivolumab/Opdivo, an anti-PD1 product very like Pembrolizumab/Keytruda, for 2 1/2 years, starting in 2010, after Stage IV (brain and lung mets) melanoma. I remain NED today. Here is an older post on anti-PD1 generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Here is a newer one with melanoma experts discussing side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
With immunotherapy, researchers for melanoma all agree….you have to give it time. I recently posted a graph showing response times. The median time is 10-12 weeks before attaining a response….though some gain responses long after that. Addtionally, it is also recognized that some tumors enlarge initially due to the inflammatory response that immunotherapy initiates.
Hope this helps. Wishing you both my best. Celeste
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- February 27, 2016 at 2:52 pm
Hi Ariel,
Sorry you and your wife are having to deal with all this. I did Nivolumab/Opdivo, an anti-PD1 product very like Pembrolizumab/Keytruda, for 2 1/2 years, starting in 2010, after Stage IV (brain and lung mets) melanoma. I remain NED today. Here is an older post on anti-PD1 generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Here is a newer one with melanoma experts discussing side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
With immunotherapy, researchers for melanoma all agree….you have to give it time. I recently posted a graph showing response times. The median time is 10-12 weeks before attaining a response….though some gain responses long after that. Addtionally, it is also recognized that some tumors enlarge initially due to the inflammatory response that immunotherapy initiates.
Hope this helps. Wishing you both my best. Celeste
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- March 3, 2016 at 2:47 pm
Ok, second dose last Friday, with some surprises, mostly bad ones…
The day prior to administering Keytruda, she had some blood exams performed and on friday the oncologist told us that she had high calcium (11.4). She was having some related symptoms, hence she was:
1) new blood extracted in order to generate a baseline.
2) serum administered in order to hydrate her.
3) Keytruda dose (100mg).
4) hospitalized in order to regulate her calcium properly.On Saturday she was released from the clinic with 10.5 calcium, but we returned on Monday because of low potasium (side effect of the drug used to lower calcium).
Although last PET (nov 20) only showed subdermal compromise, this calcium might be related to a bone mets, though it can be other strange stuff related to tumors or just that she is being really static (ankle still mending)… it appears to be something related to tumors though 🙁
She is now a little tired, most probably due to this whole event (plus three days in clinic) and lots of needles and having a constant little fever since Saturday of almost 38C.
A second thing, that Im noting as interesting at least is that on Friday her LDH level was slightly above normal 370 (prior to Keytruda, first point mentioned above), since then she had several tests performed and it skyrocketed to 1200. I dont know if potasium, calcium or the drug administered to level this can be related, but I dont think so… hence although high LDH might not be good, maybe on this instance it is? Have to keep the wishfull thinking 🙂
Bests to everyone!
Ariel -
- March 3, 2016 at 2:47 pm
Ok, second dose last Friday, with some surprises, mostly bad ones…
The day prior to administering Keytruda, she had some blood exams performed and on friday the oncologist told us that she had high calcium (11.4). She was having some related symptoms, hence she was:
1) new blood extracted in order to generate a baseline.
2) serum administered in order to hydrate her.
3) Keytruda dose (100mg).
4) hospitalized in order to regulate her calcium properly.On Saturday she was released from the clinic with 10.5 calcium, but we returned on Monday because of low potasium (side effect of the drug used to lower calcium).
Although last PET (nov 20) only showed subdermal compromise, this calcium might be related to a bone mets, though it can be other strange stuff related to tumors or just that she is being really static (ankle still mending)… it appears to be something related to tumors though 🙁
She is now a little tired, most probably due to this whole event (plus three days in clinic) and lots of needles and having a constant little fever since Saturday of almost 38C.
A second thing, that Im noting as interesting at least is that on Friday her LDH level was slightly above normal 370 (prior to Keytruda, first point mentioned above), since then she had several tests performed and it skyrocketed to 1200. I dont know if potasium, calcium or the drug administered to level this can be related, but I dont think so… hence although high LDH might not be good, maybe on this instance it is? Have to keep the wishfull thinking 🙂
Bests to everyone!
Ariel -
- March 3, 2016 at 2:47 pm
Ok, second dose last Friday, with some surprises, mostly bad ones…
The day prior to administering Keytruda, she had some blood exams performed and on friday the oncologist told us that she had high calcium (11.4). She was having some related symptoms, hence she was:
1) new blood extracted in order to generate a baseline.
2) serum administered in order to hydrate her.
3) Keytruda dose (100mg).
4) hospitalized in order to regulate her calcium properly.On Saturday she was released from the clinic with 10.5 calcium, but we returned on Monday because of low potasium (side effect of the drug used to lower calcium).
Although last PET (nov 20) only showed subdermal compromise, this calcium might be related to a bone mets, though it can be other strange stuff related to tumors or just that she is being really static (ankle still mending)… it appears to be something related to tumors though 🙁
She is now a little tired, most probably due to this whole event (plus three days in clinic) and lots of needles and having a constant little fever since Saturday of almost 38C.
A second thing, that Im noting as interesting at least is that on Friday her LDH level was slightly above normal 370 (prior to Keytruda, first point mentioned above), since then she had several tests performed and it skyrocketed to 1200. I dont know if potasium, calcium or the drug administered to level this can be related, but I dont think so… hence although high LDH might not be good, maybe on this instance it is? Have to keep the wishfull thinking 🙂
Bests to everyone!
Ariel -
- March 8, 2016 at 3:51 pm
Well, definitely after this second dose, some symptoms (side effects) appeared, swollen muscles (legs and forearms) and joint pains… they are getting a little complicated to deal with, its not that they are terribly painfull, but a constant pain (which doesnt go with our medication) is definitely bad enough.
Im thinking on starting on some topical stuff for sore muscles and joints, like the creams you use after some bad movement or doing some sport… the oncologist didnt give them, but truthfully, he is too much by the book and the alternative would be to give some corticosteroid, which would end up hindering the anti-PD1.Finally, again to my first question: did anyone, for which this end up working, had new mets under keytruda? I read Celestes blog and definitely Im seeing that anything can happen, but well I like to stay ahead of the curve; Im thinking on some adjuvant treatment.
Bests!!!
Ariel
-
- March 8, 2016 at 3:51 pm
Well, definitely after this second dose, some symptoms (side effects) appeared, swollen muscles (legs and forearms) and joint pains… they are getting a little complicated to deal with, its not that they are terribly painfull, but a constant pain (which doesnt go with our medication) is definitely bad enough.
Im thinking on starting on some topical stuff for sore muscles and joints, like the creams you use after some bad movement or doing some sport… the oncologist didnt give them, but truthfully, he is too much by the book and the alternative would be to give some corticosteroid, which would end up hindering the anti-PD1.Finally, again to my first question: did anyone, for which this end up working, had new mets under keytruda? I read Celestes blog and definitely Im seeing that anything can happen, but well I like to stay ahead of the curve; Im thinking on some adjuvant treatment.
Bests!!!
Ariel
-
- March 8, 2016 at 3:51 pm
Well, definitely after this second dose, some symptoms (side effects) appeared, swollen muscles (legs and forearms) and joint pains… they are getting a little complicated to deal with, its not that they are terribly painfull, but a constant pain (which doesnt go with our medication) is definitely bad enough.
Im thinking on starting on some topical stuff for sore muscles and joints, like the creams you use after some bad movement or doing some sport… the oncologist didnt give them, but truthfully, he is too much by the book and the alternative would be to give some corticosteroid, which would end up hindering the anti-PD1.Finally, again to my first question: did anyone, for which this end up working, had new mets under keytruda? I read Celestes blog and definitely Im seeing that anything can happen, but well I like to stay ahead of the curve; Im thinking on some adjuvant treatment.
Bests!!!
Ariel
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