› Forums › General Melanoma Community › stopping pembrolizumab (keytruda) treatment???
- This topic has 27 replies, 7 voices, and was last updated 7 years, 7 months ago by
federi83.
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- February 9, 2016 at 2:30 am
Hi all, I’m new to this sithe and so far am finding it useful!My husband, Mick, is considering stopping his pembro treatments due to severe pain and side effects…
Here is his history :
Original diagnosis of melanoma on his scalp, removed 4 times and received radiation (left a very nasty scar)
3 monthly checks with nothing showing for just over 1 year.
April 2014, melanoma discovered on his lungs and liver. Ipilimumab is started quickly. After 3rd treatment Mick’s pituitary gland has swollen causing severe headaches and blurry vision. The pituitary gland no longer works so is put on cortisone tablets. 2 weeks later Mick gets colitis and losses 13 kilos. Is then put on massive doses of cortisone which cause major swelling.
Ipilimumab has finished and they put him on pembrolizumab. Soon after he has severe sinusitis for near 6 months. He gets avascular necrosis from long term steroid use and needs a core decompression to his hip.But now he is in such severe pain through his bones, joints and muscles that he is struggling to walk, shower, sit, stand or do anything!
He currently takes hi doses of jurnista, lyrica, oxynorm and oxycontin but still the pain is unbearable.Does anyone have any information on what would happen if he was too stop the pembro?
Sorry it’s such a long post, but thank you for any responses.
- Replies
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- February 9, 2016 at 9:24 am
I'm really sorry to hear about Mick's side effects. Based on what you said it appears that his cancer has responded to both ipi and pembro (Keytruda) ? My understanding is that both ipi and pembro continue to work long after treatment is stopped ( at least 3 months and probably longer). If the side effects are having such a huge deterioration to his quality of life then perhaps a temporary stop to his treatment could make sense. Very best wishes. Mel J
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- February 9, 2016 at 9:24 am
I'm really sorry to hear about Mick's side effects. Based on what you said it appears that his cancer has responded to both ipi and pembro (Keytruda) ? My understanding is that both ipi and pembro continue to work long after treatment is stopped ( at least 3 months and probably longer). If the side effects are having such a huge deterioration to his quality of life then perhaps a temporary stop to his treatment could make sense. Very best wishes. Mel J
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- February 9, 2016 at 9:24 am
I'm really sorry to hear about Mick's side effects. Based on what you said it appears that his cancer has responded to both ipi and pembro (Keytruda) ? My understanding is that both ipi and pembro continue to work long after treatment is stopped ( at least 3 months and probably longer). If the side effects are having such a huge deterioration to his quality of life then perhaps a temporary stop to his treatment could make sense. Very best wishes. Mel J
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- February 9, 2016 at 1:18 pm
The first question relates to his response.
If you have a complete response, no one actually knows when to stop Pembro. Some theorize pembro is a two (2) year course regardless. Others suggest 1 year after a complete response and indefinitely otherwise. Some have suggestive asap (those are disappearing). However (and fortunately, right), because people are living, they don't know the answer yet…because those people are still alive.
As to what would happen if you stopped.
There again, no one knows. Doctors do think that pembro makes a change to the immune system. It's permanancy and/or length of effect is unknown. The reason for any continuing course is, if it's working, to let it keep working.
Sorry to give you such non-answers. It's a difficult situation and I hope that if you're having results, you can make the right choice. It isn't easy. I should note that a variety of pembro responders have have severe side-effects and very promising results.
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- February 9, 2016 at 1:18 pm
The first question relates to his response.
If you have a complete response, no one actually knows when to stop Pembro. Some theorize pembro is a two (2) year course regardless. Others suggest 1 year after a complete response and indefinitely otherwise. Some have suggestive asap (those are disappearing). However (and fortunately, right), because people are living, they don't know the answer yet…because those people are still alive.
As to what would happen if you stopped.
There again, no one knows. Doctors do think that pembro makes a change to the immune system. It's permanancy and/or length of effect is unknown. The reason for any continuing course is, if it's working, to let it keep working.
Sorry to give you such non-answers. It's a difficult situation and I hope that if you're having results, you can make the right choice. It isn't easy. I should note that a variety of pembro responders have have severe side-effects and very promising results.
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- February 9, 2016 at 1:18 pm
The first question relates to his response.
If you have a complete response, no one actually knows when to stop Pembro. Some theorize pembro is a two (2) year course regardless. Others suggest 1 year after a complete response and indefinitely otherwise. Some have suggestive asap (those are disappearing). However (and fortunately, right), because people are living, they don't know the answer yet…because those people are still alive.
As to what would happen if you stopped.
There again, no one knows. Doctors do think that pembro makes a change to the immune system. It's permanancy and/or length of effect is unknown. The reason for any continuing course is, if it's working, to let it keep working.
Sorry to give you such non-answers. It's a difficult situation and I hope that if you're having results, you can make the right choice. It isn't easy. I should note that a variety of pembro responders have have severe side-effects and very promising results.
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- February 9, 2016 at 3:44 pm
Here's a great link to a discussion about Keytruda posted today: http://melanomainternational.org/2016/02/february-8-2016-keytruda-opdivo-queries/#comment-24905
with answers from a Mayo doctor.
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- February 9, 2016 at 3:44 pm
Here's a great link to a discussion about Keytruda posted today: http://melanomainternational.org/2016/02/february-8-2016-keytruda-opdivo-queries/#comment-24905
with answers from a Mayo doctor.
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- February 12, 2016 at 2:01 pm
This was really helpful! Thank you. I have so many questions about keytruda. Jake has been in it 7 months. Partial response, some progression. His tumor load is very heavy. Scans March 7. If he does not have major improvement I want to add to his treatment. I don't feel his body can continue functioning with so many tumors in major organs. Man, I hate the decisions!! Thanks for all the info!!
kerri–momofjake
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- February 12, 2016 at 2:01 pm
This was really helpful! Thank you. I have so many questions about keytruda. Jake has been in it 7 months. Partial response, some progression. His tumor load is very heavy. Scans March 7. If he does not have major improvement I want to add to his treatment. I don't feel his body can continue functioning with so many tumors in major organs. Man, I hate the decisions!! Thanks for all the info!!
kerri–momofjake
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- February 12, 2016 at 2:01 pm
This was really helpful! Thank you. I have so many questions about keytruda. Jake has been in it 7 months. Partial response, some progression. His tumor load is very heavy. Scans March 7. If he does not have major improvement I want to add to his treatment. I don't feel his body can continue functioning with so many tumors in major organs. Man, I hate the decisions!! Thanks for all the info!!
kerri–momofjake
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- February 9, 2016 at 3:44 pm
Here's a great link to a discussion about Keytruda posted today: http://melanomainternational.org/2016/02/february-8-2016-keytruda-opdivo-queries/#comment-24905
with answers from a Mayo doctor.
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- February 9, 2016 at 10:08 pm
I had these same side effects after 6 months of keytruda. I took high dose steroids and it improved. I went back on keytruda for a further 4 months but even with the steroids it was unbearable pain in my muscles. I was paralysed in the mornings. Could not even cough or clear my throat without pain. So I quit jetryda as my tumour had reduced significantly and my doctors said if it recurs I can always go back on or see what therapy is available at that time. Meanwhile it has been a difficult decision whether to take a shot if remicade or try to deal with the symptoms. I decided to try to treat symptoms first and resort to remicade if that didn't work. That's because there are some risks with remicade and in fact while screening me for remicade they found I may be TB carrier so have to take antibiotics for 9 months to prevent full TB if I take remicade. After three months I can take remicade if I need it. Meanwhile my rheumatologist has put me on a combination of ketoprofen and plaquenil and my muscle pain has improved amazingly. I have very gradually (1 mg per 2 weeks) reduced my steroids down to 6 mg per day. And now will check with the endocrinologist how to proceed. The drug combo means that although I still have arthritic spondolyitis type pain I am able to live a completely normal life. Not able to go to gym or yoga but can get up dress myself drive my car and most other things. And I can still do remicade cascade resort if we want to. It takes 26 for the plaquenil to achieve optimal effect and I am on about week18 Hope that helps
anne-Louise
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- February 10, 2016 at 7:54 am
Thank you for your response, how long did it take for the pain to subside after stopping the keytruda?
We live in Brisbane, Australia, the drug is even newer here than in America, we struggle to get any answers out of any doctors and feel like Mick is a bit of a test dummy for them! Also I haven’t heard of any of the pain medication you have been taking!
I’ll keep researching and bugging the docs and nurses as what is best to do with Mick. -
- February 10, 2016 at 7:54 am
Thank you for your response, how long did it take for the pain to subside after stopping the keytruda?
We live in Brisbane, Australia, the drug is even newer here than in America, we struggle to get any answers out of any doctors and feel like Mick is a bit of a test dummy for them! Also I haven’t heard of any of the pain medication you have been taking!
I’ll keep researching and bugging the docs and nurses as what is best to do with Mick. -
- February 10, 2016 at 7:54 am
Thank you for your response, how long did it take for the pain to subside after stopping the keytruda?
We live in Brisbane, Australia, the drug is even newer here than in America, we struggle to get any answers out of any doctors and feel like Mick is a bit of a test dummy for them! Also I haven’t heard of any of the pain medication you have been taking!
I’ll keep researching and bugging the docs and nurses as what is best to do with Mick.
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- February 9, 2016 at 10:08 pm
I had these same side effects after 6 months of keytruda. I took high dose steroids and it improved. I went back on keytruda for a further 4 months but even with the steroids it was unbearable pain in my muscles. I was paralysed in the mornings. Could not even cough or clear my throat without pain. So I quit jetryda as my tumour had reduced significantly and my doctors said if it recurs I can always go back on or see what therapy is available at that time. Meanwhile it has been a difficult decision whether to take a shot if remicade or try to deal with the symptoms. I decided to try to treat symptoms first and resort to remicade if that didn't work. That's because there are some risks with remicade and in fact while screening me for remicade they found I may be TB carrier so have to take antibiotics for 9 months to prevent full TB if I take remicade. After three months I can take remicade if I need it. Meanwhile my rheumatologist has put me on a combination of ketoprofen and plaquenil and my muscle pain has improved amazingly. I have very gradually (1 mg per 2 weeks) reduced my steroids down to 6 mg per day. And now will check with the endocrinologist how to proceed. The drug combo means that although I still have arthritic spondolyitis type pain I am able to live a completely normal life. Not able to go to gym or yoga but can get up dress myself drive my car and most other things. And I can still do remicade cascade resort if we want to. It takes 26 for the plaquenil to achieve optimal effect and I am on about week18 Hope that helps
anne-Louise
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- February 9, 2016 at 10:08 pm
I had these same side effects after 6 months of keytruda. I took high dose steroids and it improved. I went back on keytruda for a further 4 months but even with the steroids it was unbearable pain in my muscles. I was paralysed in the mornings. Could not even cough or clear my throat without pain. So I quit jetryda as my tumour had reduced significantly and my doctors said if it recurs I can always go back on or see what therapy is available at that time. Meanwhile it has been a difficult decision whether to take a shot if remicade or try to deal with the symptoms. I decided to try to treat symptoms first and resort to remicade if that didn't work. That's because there are some risks with remicade and in fact while screening me for remicade they found I may be TB carrier so have to take antibiotics for 9 months to prevent full TB if I take remicade. After three months I can take remicade if I need it. Meanwhile my rheumatologist has put me on a combination of ketoprofen and plaquenil and my muscle pain has improved amazingly. I have very gradually (1 mg per 2 weeks) reduced my steroids down to 6 mg per day. And now will check with the endocrinologist how to proceed. The drug combo means that although I still have arthritic spondolyitis type pain I am able to live a completely normal life. Not able to go to gym or yoga but can get up dress myself drive my car and most other things. And I can still do remicade cascade resort if we want to. It takes 26 for the plaquenil to achieve optimal effect and I am on about week18 Hope that helps
anne-Louise
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- February 9, 2016 at 10:11 pm
I had these same side effects after 6 months of keytruda. I took high dose steroids and it improved. I went back on keytruda for a further 4 months but even with the steroids it was unbearable pain in my muscles. I was paralysed in the mornings. Could not even cough or clear my throat without pain. So I quit jetryda as my tumour had reduced significantly and my doctors said if it recurs I can always go back on or see what therapy is available at that time. Meanwhile it has been a difficult decision whether to take a shot if remicade or try to deal with the symptoms. I decided to try to treat symptoms first and resort to remicade if that didn't work. That's because there are some risks with remicade and in fact while screening me for remicade they found I may be TB carrier so have to take antibiotics for 9 months to prevent full TB if I take remicade. After three months I can take remicade if I need it. Meanwhile my rheumatologist has put me on a combination of ketoprofen and plaquenil and my muscle pain has improved amazingly. I have very gradually (1 mg per 2 weeks) reduced my steroids down to 6 mg per day. And now will check with the endocrinologist how to proceed. The drug combo means that although I still have arthritic spondolyitis type pain I am able to live a completely normal life. Not able to go to gym or yoga but can get up dress myself drive my car and most other things. And I can still do remicade cascade resort if we want to. It takes 26 for the plaquenil to achieve optimal effect and I am on about week18 Hope that helps
anne-Louise
-
- February 9, 2016 at 10:11 pm
I had these same side effects after 6 months of keytruda. I took high dose steroids and it improved. I went back on keytruda for a further 4 months but even with the steroids it was unbearable pain in my muscles. I was paralysed in the mornings. Could not even cough or clear my throat without pain. So I quit jetryda as my tumour had reduced significantly and my doctors said if it recurs I can always go back on or see what therapy is available at that time. Meanwhile it has been a difficult decision whether to take a shot if remicade or try to deal with the symptoms. I decided to try to treat symptoms first and resort to remicade if that didn't work. That's because there are some risks with remicade and in fact while screening me for remicade they found I may be TB carrier so have to take antibiotics for 9 months to prevent full TB if I take remicade. After three months I can take remicade if I need it. Meanwhile my rheumatologist has put me on a combination of ketoprofen and plaquenil and my muscle pain has improved amazingly. I have very gradually (1 mg per 2 weeks) reduced my steroids down to 6 mg per day. And now will check with the endocrinologist how to proceed. The drug combo means that although I still have arthritic spondolyitis type pain I am able to live a completely normal life. Not able to go to gym or yoga but can get up dress myself drive my car and most other things. And I can still do remicade cascade resort if we want to. It takes 26 for the plaquenil to achieve optimal effect and I am on about week18 Hope that helps
anne-Louise
-
- February 9, 2016 at 10:11 pm
I had these same side effects after 6 months of keytruda. I took high dose steroids and it improved. I went back on keytruda for a further 4 months but even with the steroids it was unbearable pain in my muscles. I was paralysed in the mornings. Could not even cough or clear my throat without pain. So I quit jetryda as my tumour had reduced significantly and my doctors said if it recurs I can always go back on or see what therapy is available at that time. Meanwhile it has been a difficult decision whether to take a shot if remicade or try to deal with the symptoms. I decided to try to treat symptoms first and resort to remicade if that didn't work. That's because there are some risks with remicade and in fact while screening me for remicade they found I may be TB carrier so have to take antibiotics for 9 months to prevent full TB if I take remicade. After three months I can take remicade if I need it. Meanwhile my rheumatologist has put me on a combination of ketoprofen and plaquenil and my muscle pain has improved amazingly. I have very gradually (1 mg per 2 weeks) reduced my steroids down to 6 mg per day. And now will check with the endocrinologist how to proceed. The drug combo means that although I still have arthritic spondolyitis type pain I am able to live a completely normal life. Not able to go to gym or yoga but can get up dress myself drive my car and most other things. And I can still do remicade cascade resort if we want to. It takes 26 for the plaquenil to achieve optimal effect and I am on about week18 Hope that helps
anne-Louise
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- September 29, 2016 at 2:34 pm
My brother (35 years ago) discovered two years ago a ridge melanoma, then a major surgical operation.After two years in which there seemed to be tumor event occurred:
in February 2016 2 to 2 lung metastases (faced with ipilimumab 4 drip and local radiotherapy)
in June 2016 13 brain metastases (whole brain radiation therapy and so far dealt with 2 drip Keytruda (anti pd1)The CT scan of a few days ago encephalon reveals a small enlargement of some of the old metastases, regression of metastases 1 and the appearance of new metastases 1
Instead lung are seeing a reduction / stabilization
The abdominal ultrasound gives everything OK x liver / spleen / rebe / pancreas
He had had to suspend Keytruda x i too high ALT and AST, but yesterday resumed the dose having normalized values.
Do you think he did well to keep up with Keytruda? You can still hope to begin operations?
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- September 29, 2016 at 2:34 pm
My brother (35 years ago) discovered two years ago a ridge melanoma, then a major surgical operation.After two years in which there seemed to be tumor event occurred:
in February 2016 2 to 2 lung metastases (faced with ipilimumab 4 drip and local radiotherapy)
in June 2016 13 brain metastases (whole brain radiation therapy and so far dealt with 2 drip Keytruda (anti pd1)The CT scan of a few days ago encephalon reveals a small enlargement of some of the old metastases, regression of metastases 1 and the appearance of new metastases 1
Instead lung are seeing a reduction / stabilization
The abdominal ultrasound gives everything OK x liver / spleen / rebe / pancreas
He had had to suspend Keytruda x i too high ALT and AST, but yesterday resumed the dose having normalized values.
Do you think he did well to keep up with Keytruda? You can still hope to begin operations?
-
- September 29, 2016 at 2:34 pm
My brother (35 years ago) discovered two years ago a ridge melanoma, then a major surgical operation.After two years in which there seemed to be tumor event occurred:
in February 2016 2 to 2 lung metastases (faced with ipilimumab 4 drip and local radiotherapy)
in June 2016 13 brain metastases (whole brain radiation therapy and so far dealt with 2 drip Keytruda (anti pd1)The CT scan of a few days ago encephalon reveals a small enlargement of some of the old metastases, regression of metastases 1 and the appearance of new metastases 1
Instead lung are seeing a reduction / stabilization
The abdominal ultrasound gives everything OK x liver / spleen / rebe / pancreas
He had had to suspend Keytruda x i too high ALT and AST, but yesterday resumed the dose having normalized values.
Do you think he did well to keep up with Keytruda? You can still hope to begin operations?
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