people on/have been on keytruda

My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!

The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.

Wish you all the best, Jenny

My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!

The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.

Wish you all the best, Jenny

My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!

The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.

Wish you all the best, Jenny

I started keytruda on May 21. First ten days I was very groggy and had low fevers and chills. Then day 11 everything cleared up. Since then have low grade fevers and brief chills occasionally.

Had pains long before keytruda cause lots of bone tumors. In November had to start taking pain stuff cause the huge 10 x 9 in shoulder started growing again.

ive had mixed results with keytruda. August scan showed 19 tumors shrinking, 4 stayed same and 7 growing. The big growing one in shoulder has a decent chunk of it go necrotic. Could tell keytruda was working on it cause could move it a little better without hurting as much. November was a way less detailed report just said some tumors have had mild growth and said the new size of shoulder tumor. Head mri in December showed 2 tumors that had not been radiated were virtually gone. The one that was radiated was about same size. Next Tuesday im supposed to get dose 14. So for me I wouldn't still be here without keytruda but by itself it is not enough.

For the pain you are describing that sounds like what they said could happen when I was on zelboraf but I got over two dozen other side affects but not that one.

Artie

I started keytruda on May 21. First ten days I was very groggy and had low fevers and chills. Then day 11 everything cleared up. Since then have low grade fevers and brief chills occasionally.

Had pains long before keytruda cause lots of bone tumors. In November had to start taking pain stuff cause the huge 10 x 9 in shoulder started growing again.

ive had mixed results with keytruda. August scan showed 19 tumors shrinking, 4 stayed same and 7 growing. The big growing one in shoulder has a decent chunk of it go necrotic. Could tell keytruda was working on it cause could move it a little better without hurting as much. November was a way less detailed report just said some tumors have had mild growth and said the new size of shoulder tumor. Head mri in December showed 2 tumors that had not been radiated were virtually gone. The one that was radiated was about same size. Next Tuesday im supposed to get dose 14. So for me I wouldn't still be here without keytruda but by itself it is not enough.

For the pain you are describing that sounds like what they said could happen when I was on zelboraf but I got over two dozen other side affects but not that one.

Artie

I started keytruda on May 21. First ten days I was very groggy and had low fevers and chills. Then day 11 everything cleared up. Since then have low grade fevers and brief chills occasionally.

Had pains long before keytruda cause lots of bone tumors. In November had to start taking pain stuff cause the huge 10 x 9 in shoulder started growing again.

ive had mixed results with keytruda. August scan showed 19 tumors shrinking, 4 stayed same and 7 growing. The big growing one in shoulder has a decent chunk of it go necrotic. Could tell keytruda was working on it cause could move it a little better without hurting as much. November was a way less detailed report just said some tumors have had mild growth and said the new size of shoulder tumor. Head mri in December showed 2 tumors that had not been radiated were virtually gone. The one that was radiated was about same size. Next Tuesday im supposed to get dose 14. So for me I wouldn't still be here without keytruda but by itself it is not enough.

For the pain you are describing that sounds like what they said could happen when I was on zelboraf but I got over two dozen other side affects but not that one.

Artie

Hi Crystale,

You can click on my sweetaugust name and view my profile and it will tell you all about my 2+ years on Keytruda.  I started in Oct 2012 and am still on the trial.  Had a good response right away, but also had a slow-to-respond node that was aggressive.   It finally responded 6 months into the trial.  Then all shrank down to nothing and I'm still doing great.

All my best to you, Laurie

Hi Crystale,

You can click on my sweetaugust name and view my profile and it will tell you all about my 2+ years on Keytruda.  I started in Oct 2012 and am still on the trial.  Had a good response right away, but also had a slow-to-respond node that was aggressive.   It finally responded 6 months into the trial.  Then all shrank down to nothing and I'm still doing great.

All my best to you, Laurie

Hi Crystale,

You can click on my sweetaugust name and view my profile and it will tell you all about my 2+ years on Keytruda.  I started in Oct 2012 and am still on the trial.  Had a good response right away, but also had a slow-to-respond node that was aggressive.   It finally responded 6 months into the trial.  Then all shrank down to nothing and I'm still doing great.

All my best to you, Laurie

I started Keytruda on 15 Sept 2014 and have just had cycle 8. I went on holiday after the first infusion as my doctor said it would be unusual for the bad side effects to kick in in the first couple of weeks. Also I had had  two of cycles of Ipi and had tolerated that ok. At the time I had a 6cm mass in my lung and three or four melanoma spots in my chest. My doctors were mostly worried about the digestive system and told me to call immediately if I had diarrhea. 

So I remember going to my oncologist appointment on Oct 2 and he said straight away. 'you look like you have a spring in your step' and it was true. It started working after 3 weeks! I started to feel like cooking again and my cough was improving although I was still coughing up stuff. Two weeks ago I had a scan which shows the tumour in my lung reduced by 30-40% to 3 cm and my chest nodes are almost back to normal. I only cough in the mornings now.

As far as side effects, the biggest is that my thyroid is shot now, so I will take thyroid tablets for the rest of my life. They are still monitoring the adrenal and pituitary glands. I also get tired for no reason. It has slowed me down a bit. I have a rash which I have treated with small amount of a steroid cream, very sparingly as it can affect your immune system which we are trying to boost. It seems when I clear the rash up somewhere it pops up somewhere else. In general my side effects have not really changed from the beginning except for gradual deterioration of the thyroid. Even the rash with Keytruda is not as bad as the rash with Ipi.

Hope your pain eases up. I know they have done lots of trials here for ppl with brain mets where they give (I think) an infusion of 1 mg per kilo ipi and 3 mg per kilo nivo every three weeks. My keytruda takes 30 mins but I have a friend (next door neighbour can you believe it!) who is on the trial and his takes 3 hours.

I started Keytruda on 15 Sept 2014 and have just had cycle 8. I went on holiday after the first infusion as my doctor said it would be unusual for the bad side effects to kick in in the first couple of weeks. Also I had had  two of cycles of Ipi and had tolerated that ok. At the time I had a 6cm mass in my lung and three or four melanoma spots in my chest. My doctors were mostly worried about the digestive system and told me to call immediately if I had diarrhea. 

So I remember going to my oncologist appointment on Oct 2 and he said straight away. 'you look like you have a spring in your step' and it was true. It started working after 3 weeks! I started to feel like cooking again and my cough was improving although I was still coughing up stuff. Two weeks ago I had a scan which shows the tumour in my lung reduced by 30-40% to 3 cm and my chest nodes are almost back to normal. I only cough in the mornings now.

As far as side effects, the biggest is that my thyroid is shot now, so I will take thyroid tablets for the rest of my life. They are still monitoring the adrenal and pituitary glands. I also get tired for no reason. It has slowed me down a bit. I have a rash which I have treated with small amount of a steroid cream, very sparingly as it can affect your immune system which we are trying to boost. It seems when I clear the rash up somewhere it pops up somewhere else. In general my side effects have not really changed from the beginning except for gradual deterioration of the thyroid. Even the rash with Keytruda is not as bad as the rash with Ipi.

Hope your pain eases up. I know they have done lots of trials here for ppl with brain mets where they give (I think) an infusion of 1 mg per kilo ipi and 3 mg per kilo nivo every three weeks. My keytruda takes 30 mins but I have a friend (next door neighbour can you believe it!) who is on the trial and his takes 3 hours.

I started Keytruda on 15 Sept 2014 and have just had cycle 8. I went on holiday after the first infusion as my doctor said it would be unusual for the bad side effects to kick in in the first couple of weeks. Also I had had  two of cycles of Ipi and had tolerated that ok. At the time I had a 6cm mass in my lung and three or four melanoma spots in my chest. My doctors were mostly worried about the digestive system and told me to call immediately if I had diarrhea. 

So I remember going to my oncologist appointment on Oct 2 and he said straight away. 'you look like you have a spring in your step' and it was true. It started working after 3 weeks! I started to feel like cooking again and my cough was improving although I was still coughing up stuff. Two weeks ago I had a scan which shows the tumour in my lung reduced by 30-40% to 3 cm and my chest nodes are almost back to normal. I only cough in the mornings now.

As far as side effects, the biggest is that my thyroid is shot now, so I will take thyroid tablets for the rest of my life. They are still monitoring the adrenal and pituitary glands. I also get tired for no reason. It has slowed me down a bit. I have a rash which I have treated with small amount of a steroid cream, very sparingly as it can affect your immune system which we are trying to boost. It seems when I clear the rash up somewhere it pops up somewhere else. In general my side effects have not really changed from the beginning except for gradual deterioration of the thyroid. Even the rash with Keytruda is not as bad as the rash with Ipi.

Hope your pain eases up. I know they have done lots of trials here for ppl with brain mets where they give (I think) an infusion of 1 mg per kilo ipi and 3 mg per kilo nivo every three weeks. My keytruda takes 30 mins but I have a friend (next door neighbour can you believe it!) who is on the trial and his takes 3 hours.

I've had 3 Ketruda treatments. I get a 4th one in a few weeks. Then the Onocologist will give me another PET scan to see if the spot in my lung is shrinking. I have tumors going up my shinbone on my leg from the original incision site that seem to be swelling up bigger. I heard that was normal but I don't know. I've been experiencing a little bit of a cough. But thats mostly at night when I go to bed. Trying to keep a positive attitude, as this is my 4th year with metastatic melanoma, and the Dr. told me people like me usually don't live past 5 years with this disease. We'll see.