Keytruda – Side Effects Kicking In!

Wow. I'm on both. Been on Xgeva since February and Keytruda since May 21. Key every 3 weeks and Xgeva every 4 weeks. One thing I've done is seperate my Xgeva dose by a week even if that means I have to go 5 weeks for it. This last time though I did get it the very next day. So key on Tuesday and xgeva on Wednesday. The nurse practitioner (I rarely see the doc) said I could get it the same day. When I questioned my concern about getting both at once she said yes she would much prefer I get them the next day if that was okay with me. Sooo read into that what you will.

As far as fever they tell me mine are caused by Keytruda. That it is my immune system responding which is good. My fevers are usually less than 101 although once a few weeks ago it did get up to 102.9 before the tylenol finally knocked it back down. I usually get these pretty much every day but usually they go away on their own without the tylenol. Also with the fever I sometimes get the chills where I can't stop shaking until I get under a blanket with a heating pad for a little while.

For the severe bone/joint pains that can be a side affect of xgeva. Bone pains they say in their list is very common.. Now whether that is because of the medicine or just the nature of us needing the medicine I dunno. For me usually for a couple days after Xgeva various bones do hurt a lot but they go away after a few days. I especially noticed this with the first 5 or so doses but not as much anymore. When I mean a lot it is usually about the size of a quarter somewhere with grade level 8 or more pain. When I asked the doc way back he said it was the xgeva strengthening my bones.

Dunno if that helps. Best of luck to you both.

Artie

Wow. I'm on both. Been on Xgeva since February and Keytruda since May 21. Key every 3 weeks and Xgeva every 4 weeks. One thing I've done is seperate my Xgeva dose by a week even if that means I have to go 5 weeks for it. This last time though I did get it the very next day. So key on Tuesday and xgeva on Wednesday. The nurse practitioner (I rarely see the doc) said I could get it the same day. When I questioned my concern about getting both at once she said yes she would much prefer I get them the next day if that was okay with me. Sooo read into that what you will.

As far as fever they tell me mine are caused by Keytruda. That it is my immune system responding which is good. My fevers are usually less than 101 although once a few weeks ago it did get up to 102.9 before the tylenol finally knocked it back down. I usually get these pretty much every day but usually they go away on their own without the tylenol. Also with the fever I sometimes get the chills where I can't stop shaking until I get under a blanket with a heating pad for a little while.

For the severe bone/joint pains that can be a side affect of xgeva. Bone pains they say in their list is very common.. Now whether that is because of the medicine or just the nature of us needing the medicine I dunno. For me usually for a couple days after Xgeva various bones do hurt a lot but they go away after a few days. I especially noticed this with the first 5 or so doses but not as much anymore. When I mean a lot it is usually about the size of a quarter somewhere with grade level 8 or more pain. When I asked the doc way back he said it was the xgeva strengthening my bones.

Dunno if that helps. Best of luck to you both.

Artie

Wow. I'm on both. Been on Xgeva since February and Keytruda since May 21. Key every 3 weeks and Xgeva every 4 weeks. One thing I've done is seperate my Xgeva dose by a week even if that means I have to go 5 weeks for it. This last time though I did get it the very next day. So key on Tuesday and xgeva on Wednesday. The nurse practitioner (I rarely see the doc) said I could get it the same day. When I questioned my concern about getting both at once she said yes she would much prefer I get them the next day if that was okay with me. Sooo read into that what you will.

As far as fever they tell me mine are caused by Keytruda. That it is my immune system responding which is good. My fevers are usually less than 101 although once a few weeks ago it did get up to 102.9 before the tylenol finally knocked it back down. I usually get these pretty much every day but usually they go away on their own without the tylenol. Also with the fever I sometimes get the chills where I can't stop shaking until I get under a blanket with a heating pad for a little while.

For the severe bone/joint pains that can be a side affect of xgeva. Bone pains they say in their list is very common.. Now whether that is because of the medicine or just the nature of us needing the medicine I dunno. For me usually for a couple days after Xgeva various bones do hurt a lot but they go away after a few days. I especially noticed this with the first 5 or so doses but not as much anymore. When I mean a lot it is usually about the size of a quarter somewhere with grade level 8 or more pain. When I asked the doc way back he said it was the xgeva strengthening my bones.

Dunno if that helps. Best of luck to you both.

Artie

Hey Rick,

Sorry your wife is dealing with such side effects.  Up til now, fevers have not shown up in the data as recognized side effects for the anti-PD1 products. As was the case with ipi, when more folks gained access to it and took it…we learned a lot more about effects and side effects. I suspect that as more people take the anti-PD1 drugs we will learn more about what they do as well.  I took nivo for 2 1/2 years and experienced fatigue, itching, mouth ulcers, arthralgias, some wheezing, and vitiligo.  Never any specific fever for me. But….Artie seems to be dealing with an experience much like your wife.

Here is a list of what the data has shown thus far as side effects to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

And just this month, this article regarding arthritis in anti-PD1 patients…..sometimes continuing years after taking the drug…was published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

The only other thing I can tell you from my experience is that the side effects I had did wax and wane oddly…without real rhyme nor reason.  So, I hope that your wife's symptoms will abate as mysteriously as they arose.  Wishing you both my best.  Celeste

Hey Rick,

Sorry your wife is dealing with such side effects.  Up til now, fevers have not shown up in the data as recognized side effects for the anti-PD1 products. As was the case with ipi, when more folks gained access to it and took it…we learned a lot more about effects and side effects. I suspect that as more people take the anti-PD1 drugs we will learn more about what they do as well.  I took nivo for 2 1/2 years and experienced fatigue, itching, mouth ulcers, arthralgias, some wheezing, and vitiligo.  Never any specific fever for me. But….Artie seems to be dealing with an experience much like your wife.

Here is a list of what the data has shown thus far as side effects to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

And just this month, this article regarding arthritis in anti-PD1 patients…..sometimes continuing years after taking the drug…was published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

The only other thing I can tell you from my experience is that the side effects I had did wax and wane oddly…without real rhyme nor reason.  So, I hope that your wife's symptoms will abate as mysteriously as they arose.  Wishing you both my best.  Celeste

Hey Rick,

Sorry your wife is dealing with such side effects.  Up til now, fevers have not shown up in the data as recognized side effects for the anti-PD1 products. As was the case with ipi, when more folks gained access to it and took it…we learned a lot more about effects and side effects. I suspect that as more people take the anti-PD1 drugs we will learn more about what they do as well.  I took nivo for 2 1/2 years and experienced fatigue, itching, mouth ulcers, arthralgias, some wheezing, and vitiligo.  Never any specific fever for me. But….Artie seems to be dealing with an experience much like your wife.

Here is a list of what the data has shown thus far as side effects to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

And just this month, this article regarding arthritis in anti-PD1 patients…..sometimes continuing years after taking the drug…was published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

The only other thing I can tell you from my experience is that the side effects I had did wax and wane oddly…without real rhyme nor reason.  So, I hope that your wife's symptoms will abate as mysteriously as they arose.  Wishing you both my best.  Celeste

Hi – I have been on Keytruda for 6 months. After each infusion I have a period of about 7 days of joint pain, sometimes severe. As quickly as it starts, it goes away. One day I can hardly walk and the next I'm perfectly fine. It is really frustrating. The last two infusions I tried acupuncture before the infusion and it seemed to help. It is worth a try. Good luck. 

Hi – I have been on Keytruda for 6 months. After each infusion I have a period of about 7 days of joint pain, sometimes severe. As quickly as it starts, it goes away. One day I can hardly walk and the next I'm perfectly fine. It is really frustrating. The last two infusions I tried acupuncture before the infusion and it seemed to help. It is worth a try. Good luck. 

Hi – I have been on Keytruda for 6 months. After each infusion I have a period of about 7 days of joint pain, sometimes severe. As quickly as it starts, it goes away. One day I can hardly walk and the next I'm perfectly fine. It is really frustrating. The last two infusions I tried acupuncture before the infusion and it seemed to help. It is worth a try. Good luck. 

Hi there,

I started Keytruda on Oct 31, 2012.  I've been on it for two years and am now scheduled to be on it for good, with no end date.  I have never taken or really heard of Xgeva.

In the first year, my side effects from Keytruda were some nausea and an itchy rash on my chest.  In the winter months it was worse than in the humid summer months…where all side effects seemed to vanish.  I also had a feeling of my organs being squeezed during the really cold days of winter. 

In the second year, my side effects again included some nausea.  The rash that had been on my chest was gone, and instead the rash moved to the back of my head and on some of my face.  The face rash went away in the summer, but the head rash just went away in the past month.  Joint pain started last Spring, mostly just on the really cold days.  No joint pain in the summer.  And I have vitiligo that started to develop last Spring.  Its just on my shoulders and back, and one spot on my forehead.  All perfectly round dime, nickel, and quarter sizes.  7-10 vitiligo spots in total.

Aside from the side effects, I have been quite healthy for the past two years.  Actually haven't really gotten a cold or the flu or bronchitis at all, where I used to get sick pretty much monthly.  Either that is due to the drug boosting my immune system, or it's my super healthy change in diet…or most likely I am healthier due to both the drug and my diet.  Either way, I feel quite lucky to be feeling fantastic.

Much health and happiness to you all, Laurie

Hi there,

I started Keytruda on Oct 31, 2012.  I've been on it for two years and am now scheduled to be on it for good, with no end date.  I have never taken or really heard of Xgeva.

In the first year, my side effects from Keytruda were some nausea and an itchy rash on my chest.  In the winter months it was worse than in the humid summer months…where all side effects seemed to vanish.  I also had a feeling of my organs being squeezed during the really cold days of winter. 

In the second year, my side effects again included some nausea.  The rash that had been on my chest was gone, and instead the rash moved to the back of my head and on some of my face.  The face rash went away in the summer, but the head rash just went away in the past month.  Joint pain started last Spring, mostly just on the really cold days.  No joint pain in the summer.  And I have vitiligo that started to develop last Spring.  Its just on my shoulders and back, and one spot on my forehead.  All perfectly round dime, nickel, and quarter sizes.  7-10 vitiligo spots in total.

Aside from the side effects, I have been quite healthy for the past two years.  Actually haven't really gotten a cold or the flu or bronchitis at all, where I used to get sick pretty much monthly.  Either that is due to the drug boosting my immune system, or it's my super healthy change in diet…or most likely I am healthier due to both the drug and my diet.  Either way, I feel quite lucky to be feeling fantastic.

Much health and happiness to you all, Laurie

Hi there,

I started Keytruda on Oct 31, 2012.  I've been on it for two years and am now scheduled to be on it for good, with no end date.  I have never taken or really heard of Xgeva.

In the first year, my side effects from Keytruda were some nausea and an itchy rash on my chest.  In the winter months it was worse than in the humid summer months…where all side effects seemed to vanish.  I also had a feeling of my organs being squeezed during the really cold days of winter. 

In the second year, my side effects again included some nausea.  The rash that had been on my chest was gone, and instead the rash moved to the back of my head and on some of my face.  The face rash went away in the summer, but the head rash just went away in the past month.  Joint pain started last Spring, mostly just on the really cold days.  No joint pain in the summer.  And I have vitiligo that started to develop last Spring.  Its just on my shoulders and back, and one spot on my forehead.  All perfectly round dime, nickel, and quarter sizes.  7-10 vitiligo spots in total.

Aside from the side effects, I have been quite healthy for the past two years.  Actually haven't really gotten a cold or the flu or bronchitis at all, where I used to get sick pretty much monthly.  Either that is due to the drug boosting my immune system, or it's my super healthy change in diet…or most likely I am healthier due to both the drug and my diet.  Either way, I feel quite lucky to be feeling fantastic.

Much health and happiness to you all, Laurie

All of these posts sound so familiar.  I received Keytruda for a year and though I only had a partial response, it slowed my tumor enough to keep me alive…still.  I'm told that I'm the poster boy for side effects.  I had them all.  Now, I'm battling the side effects of the drug more than my cancer.  Keytruda shut down my pituitary, thyroid, adrenals, gonads, and everything else you can imagine.  I have not been able to regulate any of these issues lately after feeling pretty good for about six months.  I constantly feel like I've got the flu….with a hangover thrown in.  Though most of my worst symptoms seem to have been caused by the adrenal insufficiency, it's a mystery to me now.  I spend most of my life in bed and I'm normally a super healthy, strong, hard working individual.  I have been reduced to a sick patient who can barely work. I am taking Cortisone for the adrenal problems, Armour Thyroid for that problem, and I get Testosterone injections every two weeks to help with that.  I assume that there are another hundred things that I don't have, that I need to feel somewhat normal but I don't have the doctors who will spend the brain power to try and figure it out.  I'd really like to know if there is any information about the side effects caused by Keytruda and whether they are permanent or not.  I have a client who works for Merck and I've asked her to see if she can find out anything there in the Keytruda department with regard to that and even they don't seem to have any answers.  I was ok for about a year and just took the fatigue in stride, hitting the sack when I needed rest.  I was feeling good a majority of the time and usually had four or five days a week where I felt just fine.  I was even in the gym working out for an hour a day.  All that is impossible now.  It's flipped around now, where I'm spending five days a week in bed and two days up.  The quality of those two days isn't even very good.  I can work for an hour or two and that's about it.