Immunotherapy: Keytruda (pembrolizumab)

Posted by ina3 @ina3, Oct 30, 2018

Hi,

My name is Ina and i am writing on behalf of my dad who was diagnosed with lung cancer- adenocarcinoma 3 months ago.

I live in Washington DC and my dad lives in country Georgia.

Since I joined this forum, I learnt so many things, reading some of the stories gave me hope and I hope that I will be able share the story about my dad with positive results soon.

Since I cannot bring my dad here in the USA, I am trying to get a second opinion on the treatment that he was given. I would appreciate very much if you give me some information and advice.

After the genetics test we were told that
ROS-1, ALK were negatives but PDL1 expression is positive and MSI-is High. These results means that they can not use targeted therapy but they can use immunotherapy with chemotherapy;
Doctors advised Pembrolizumab(keytruda) 200mg+ karboplatin+ pemetrexet /ever 3 weeeks
And with pemetrexet, we mus take folic acid vitamin and B12

The treatment will be repeated every 3 weeeks and untıl 6 th cycle.

I am interested in side effect too. For how long the side effects last usually? I worry that with both Chemo and Immunotherapy every 3 weeks he wont get a break practically and the side effect being severe.

Thank you again.

@colleenyoung

Merry, Thanks for posting this information about the new dosage and protocol of Keytruda (pembrolizumab) for all cancer types for which this drug is used, including lung cancer. I moved your post to this discussion where members are talking about this drug.

I too would like to hear from anyone who is getting the new dose of 400 milligrams (mg) every six weeks instead of the current dose of 200 mg every three weeks.

Jump to this post

My husband has been on Keytruda – is at John Wayne Cancer in Santa Monica, CA – Stage 4 Melanoma.
He has not been given the higher dose.

REPLY

Hello – I haven't been on the site for a while because caretaking for my husband has been very busy and challenging. I would like some feedback on Keytruda side effects if there's anyone here who can share.

My husband was diagnosed almost four years ago with a "Cancer of Unknown Primary" that they have now opted to call Lung Cancer. The cancer is behaving much like lung and the main tumor first appeared in his lung and lymph node central in his chest. Multiple biopsies were inconclusive as to type so we've had to proceed with 'possible lung'. The cancer remained stable for three years and then spread to his hip and spine and grew around his bronchi, cutting off his ability to breath easily (he also has COPD). We used marijuana up to this June and it was holding things at bay or they simply weren't growing. In June we did five rounds of radiation to the center of his chest (it worked with few side effects). We followed with chemo and immunotherapy (Keytruda). The chemo was pretty brutal for him with multiple expected and some unexpected side effects (nausea, diarrhea, fatigue, etc). The uncommon side effects were blood in the urine and fainting. When we switched to maintenance therapy with Alimpta and Keytruda my husband actually got sicker, with more side effects. We have stopped treatment until March when we'll repeat a PET scan. We've had to stop because our last PET showed the cancer has now spread to his adrenal glands, a new tumor has appeared in his lung and an additional lymph node is now showing cancer. So, all in all, it worked for about 3 months and then stopped working and he's been quite ill for the past 11 weeks.
Here is my question – My husband has developed a heart problem which is being tested with a 30 day heart monitor. Oddly, I was the one who questioned his heart function (not supportive care, not oncology, etc). He had a pulse of 180 for two days and now has either Afib or Tachycardia or??? He had no serious heart problems previously. My research shows that Immunotherapy (specifically Keytruda) can put some people at risk for serious heart disease. I'm wondering how to broach the subject with oncology, as they are acting like it's no big deal.
After all we've been through with the doctors being unable to diagnose or treat the cancer and now putting him on a cancer treatment that isn't working and really had no upside and now we are fighting a heart problem………..what to do? Has anyone else experienced heart issues on immunotherapy and does anyone know a good resource to see if the heart condition might improve once the immuno has left his system or if this is now another permenant problem

After weeks of my reaching out to doctors about his not feeling well, it was me who called and got cardiology involved and it only took 12 hours for the cardiologist to realize my husband had a serious heart issue. I'm lost all faith in doctors but since I'm not one (only play one on TV), I need them and I'm not sure how to proceed.
Sorry this is so long. I appreciate anyone who gets to the end of it (ha ha) and has any advice or information that might help me navigate this latest debacle.

Hugs to all

REPLY
@cindylb

Hello – I haven't been on the site for a while because caretaking for my husband has been very busy and challenging. I would like some feedback on Keytruda side effects if there's anyone here who can share.

My husband was diagnosed almost four years ago with a "Cancer of Unknown Primary" that they have now opted to call Lung Cancer. The cancer is behaving much like lung and the main tumor first appeared in his lung and lymph node central in his chest. Multiple biopsies were inconclusive as to type so we've had to proceed with 'possible lung'. The cancer remained stable for three years and then spread to his hip and spine and grew around his bronchi, cutting off his ability to breath easily (he also has COPD). We used marijuana up to this June and it was holding things at bay or they simply weren't growing. In June we did five rounds of radiation to the center of his chest (it worked with few side effects). We followed with chemo and immunotherapy (Keytruda). The chemo was pretty brutal for him with multiple expected and some unexpected side effects (nausea, diarrhea, fatigue, etc). The uncommon side effects were blood in the urine and fainting. When we switched to maintenance therapy with Alimpta and Keytruda my husband actually got sicker, with more side effects. We have stopped treatment until March when we'll repeat a PET scan. We've had to stop because our last PET showed the cancer has now spread to his adrenal glands, a new tumor has appeared in his lung and an additional lymph node is now showing cancer. So, all in all, it worked for about 3 months and then stopped working and he's been quite ill for the past 11 weeks.
Here is my question – My husband has developed a heart problem which is being tested with a 30 day heart monitor. Oddly, I was the one who questioned his heart function (not supportive care, not oncology, etc). He had a pulse of 180 for two days and now has either Afib or Tachycardia or??? He had no serious heart problems previously. My research shows that Immunotherapy (specifically Keytruda) can put some people at risk for serious heart disease. I'm wondering how to broach the subject with oncology, as they are acting like it's no big deal.
After all we've been through with the doctors being unable to diagnose or treat the cancer and now putting him on a cancer treatment that isn't working and really had no upside and now we are fighting a heart problem………..what to do? Has anyone else experienced heart issues on immunotherapy and does anyone know a good resource to see if the heart condition might improve once the immuno has left his system or if this is now another permenant problem

After weeks of my reaching out to doctors about his not feeling well, it was me who called and got cardiology involved and it only took 12 hours for the cardiologist to realize my husband had a serious heart issue. I'm lost all faith in doctors but since I'm not one (only play one on TV), I need them and I'm not sure how to proceed.
Sorry this is so long. I appreciate anyone who gets to the end of it (ha ha) and has any advice or information that might help me navigate this latest debacle.

Hugs to all

Jump to this post

I’ve had 9 months of three types of chemo and keytruda. Was sick 10 days after infusions than build back up for 10 and started all over. I requested to stop and was put just on keytruda and no more sickness being on that since last October. I do have a day or two of blow outs. Their is side affects but will not go back on chemo. As that’s not a way to live. My side affects are inflammation in joints which I’m know taking prednisone 10 mg. Which is keeping it controlled. Good luck and hope this helps.

REPLY
@richcolleen

I’ve had 9 months of three types of chemo and keytruda. Was sick 10 days after infusions than build back up for 10 and started all over. I requested to stop and was put just on keytruda and no more sickness being on that since last October. I do have a day or two of blow outs. Their is side affects but will not go back on chemo. As that’s not a way to live. My side affects are inflammation in joints which I’m know taking prednisone 10 mg. Which is keeping it controlled. Good luck and hope this helps.

Jump to this post

@richcolleen Thanks for your reply. My husband had a rough time with the chemo as well. Unfortunately, it looks like the Keytruda/Alimpta maintenance isn't working AND he got one of the more rare and serious side effects of heart problems (Afib). I think most people tolerate the immunotherapy pretty well and it works for them. I don't think my husband will be in that group. Sigh. It's a balancing game – more time, but quality time vs. side effects. Hugs and good luck to you too.

REPLY
@cindylb

Hello – I haven't been on the site for a while because caretaking for my husband has been very busy and challenging. I would like some feedback on Keytruda side effects if there's anyone here who can share.

My husband was diagnosed almost four years ago with a "Cancer of Unknown Primary" that they have now opted to call Lung Cancer. The cancer is behaving much like lung and the main tumor first appeared in his lung and lymph node central in his chest. Multiple biopsies were inconclusive as to type so we've had to proceed with 'possible lung'. The cancer remained stable for three years and then spread to his hip and spine and grew around his bronchi, cutting off his ability to breath easily (he also has COPD). We used marijuana up to this June and it was holding things at bay or they simply weren't growing. In June we did five rounds of radiation to the center of his chest (it worked with few side effects). We followed with chemo and immunotherapy (Keytruda). The chemo was pretty brutal for him with multiple expected and some unexpected side effects (nausea, diarrhea, fatigue, etc). The uncommon side effects were blood in the urine and fainting. When we switched to maintenance therapy with Alimpta and Keytruda my husband actually got sicker, with more side effects. We have stopped treatment until March when we'll repeat a PET scan. We've had to stop because our last PET showed the cancer has now spread to his adrenal glands, a new tumor has appeared in his lung and an additional lymph node is now showing cancer. So, all in all, it worked for about 3 months and then stopped working and he's been quite ill for the past 11 weeks.
Here is my question – My husband has developed a heart problem which is being tested with a 30 day heart monitor. Oddly, I was the one who questioned his heart function (not supportive care, not oncology, etc). He had a pulse of 180 for two days and now has either Afib or Tachycardia or??? He had no serious heart problems previously. My research shows that Immunotherapy (specifically Keytruda) can put some people at risk for serious heart disease. I'm wondering how to broach the subject with oncology, as they are acting like it's no big deal.
After all we've been through with the doctors being unable to diagnose or treat the cancer and now putting him on a cancer treatment that isn't working and really had no upside and now we are fighting a heart problem………..what to do? Has anyone else experienced heart issues on immunotherapy and does anyone know a good resource to see if the heart condition might improve once the immuno has left his system or if this is now another permenant problem

After weeks of my reaching out to doctors about his not feeling well, it was me who called and got cardiology involved and it only took 12 hours for the cardiologist to realize my husband had a serious heart issue. I'm lost all faith in doctors but since I'm not one (only play one on TV), I need them and I'm not sure how to proceed.
Sorry this is so long. I appreciate anyone who gets to the end of it (ha ha) and has any advice or information that might help me navigate this latest debacle.

Hugs to all

Jump to this post

@cindylb– Cindy, hi. I haven't been feeling well so I took a bit of time to myself. I'm going to get retested tomorrow for covid. So, your husband's doctors have finally have decided on his primary cancer. I know that it's been a long road for you both. You both must be exhausted from it all.
The way that immunotherapy works are to stimulate your immune system in fighting cancer. However, sometimes your own immune system overreacts and fights too hard and causes more problems and side effects. Immunotherapy is a Godsend for many people but for others, it can be pretty rough.
Here are side effects from Keytruda:
https://www.drugs.com/sfx/keytruda-side-effects.html#:~:text=Side%20effects%20requiring%20immediate%20medical%20attention.%201%20Bladder,8%20clay-colored%20stools.%209%20constipation.%2010%20cough.%20
It's a pretty long list and can be very intimidating. And doctors can be too. I would suggest having his Cardiologist contact his Immunologist. They should all be working together for your husband's well being. Do not let them work alone. Your husband needs a team. And perhaps a palliative one now.

Do you think that you can go ahead and begin this process?

Liked by cindylb

REPLY
@cindylb

Hello – I haven't been on the site for a while because caretaking for my husband has been very busy and challenging. I would like some feedback on Keytruda side effects if there's anyone here who can share.

My husband was diagnosed almost four years ago with a "Cancer of Unknown Primary" that they have now opted to call Lung Cancer. The cancer is behaving much like lung and the main tumor first appeared in his lung and lymph node central in his chest. Multiple biopsies were inconclusive as to type so we've had to proceed with 'possible lung'. The cancer remained stable for three years and then spread to his hip and spine and grew around his bronchi, cutting off his ability to breath easily (he also has COPD). We used marijuana up to this June and it was holding things at bay or they simply weren't growing. In June we did five rounds of radiation to the center of his chest (it worked with few side effects). We followed with chemo and immunotherapy (Keytruda). The chemo was pretty brutal for him with multiple expected and some unexpected side effects (nausea, diarrhea, fatigue, etc). The uncommon side effects were blood in the urine and fainting. When we switched to maintenance therapy with Alimpta and Keytruda my husband actually got sicker, with more side effects. We have stopped treatment until March when we'll repeat a PET scan. We've had to stop because our last PET showed the cancer has now spread to his adrenal glands, a new tumor has appeared in his lung and an additional lymph node is now showing cancer. So, all in all, it worked for about 3 months and then stopped working and he's been quite ill for the past 11 weeks.
Here is my question – My husband has developed a heart problem which is being tested with a 30 day heart monitor. Oddly, I was the one who questioned his heart function (not supportive care, not oncology, etc). He had a pulse of 180 for two days and now has either Afib or Tachycardia or??? He had no serious heart problems previously. My research shows that Immunotherapy (specifically Keytruda) can put some people at risk for serious heart disease. I'm wondering how to broach the subject with oncology, as they are acting like it's no big deal.
After all we've been through with the doctors being unable to diagnose or treat the cancer and now putting him on a cancer treatment that isn't working and really had no upside and now we are fighting a heart problem………..what to do? Has anyone else experienced heart issues on immunotherapy and does anyone know a good resource to see if the heart condition might improve once the immuno has left his system or if this is now another permenant problem

After weeks of my reaching out to doctors about his not feeling well, it was me who called and got cardiology involved and it only took 12 hours for the cardiologist to realize my husband had a serious heart issue. I'm lost all faith in doctors but since I'm not one (only play one on TV), I need them and I'm not sure how to proceed.
Sorry this is so long. I appreciate anyone who gets to the end of it (ha ha) and has any advice or information that might help me navigate this latest debacle.

Hugs to all

Jump to this post

@cindylb, cancer treatment-induced heart disease does happen. There is a discussion on Mayo Clinic Connect dedicated to it here:
– Cancer Treatment Induced Heart Disease https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/

In fact, many major cancer centers have clinics specifically dealing with cardio-oncology. Mayo cardiologists published this paper on the topic back in 2014
– Evaluation and Management of Patients With Heart Disease and Cancer: Cardio-Oncology https://www.mayoclinicproceedings.org/article/S0025-6196(14)00475-3/pdf

The cancer education team also posted a related blog and video here on Mayo Clinic Connect. See
– Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/

Might there be a Cardio-Oncology clinic at the hospital where your husband is treated?

REPLY

THANK YOU!! We've confirmed that my husband has serious heart problems (as of today) due to immunotherapy. Sigh………..

REPLY
@merpreb

@cindylb– Cindy, hi. I haven't been feeling well so I took a bit of time to myself. I'm going to get retested tomorrow for covid. So, your husband's doctors have finally have decided on his primary cancer. I know that it's been a long road for you both. You both must be exhausted from it all.
The way that immunotherapy works are to stimulate your immune system in fighting cancer. However, sometimes your own immune system overreacts and fights too hard and causes more problems and side effects. Immunotherapy is a Godsend for many people but for others, it can be pretty rough.
Here are side effects from Keytruda:
https://www.drugs.com/sfx/keytruda-side-effects.html#:~:text=Side%20effects%20requiring%20immediate%20medical%20attention.%201%20Bladder,8%20clay-colored%20stools.%209%20constipation.%2010%20cough.%20
It's a pretty long list and can be very intimidating. And doctors can be too. I would suggest having his Cardiologist contact his Immunologist. They should all be working together for your husband's well being. Do not let them work alone. Your husband needs a team. And perhaps a palliative one now.

Do you think that you can go ahead and begin this process?

Jump to this post

Hi Merry @merpreb Nice to hear from you. I sure hope you DON'T have Covid (like all of this wasn't hard enough, right?) Hugs to you. Hope you got some rest too. I've been so busy I haven't really updated on here. My husband has been in palliative/supportive care for about a year now and it helps a great deal. Somewhere between full chemo and maintenance chemo there was a disconnect. We have an extremely hard working, sharp oncologist who got all of it in place. We also have a wonderful palliative care doctor and weekly nurse visits. I think the breakdown was somewhere with the nurse not getting my screeching over to the doc in supportive care. We're on track now as I went back to our oncologist who got the cardiologist on board and they have confirmed he has Afib now from the treatment. The real bugger on all this………..the Keytruda wasn't actually working turns out, so the chemo and radiation worked but not the Keytruda/Immunotherapy. Very disappointing but also this 'break' to rebuild his health after chemo has turned into all cardiology all the time and now we have that on our plate as well. You know how the brochures on drugs and treatments work…..'rare' side effects, rare only if you don't get them I guess. Thank you for your support. Moral of this story is….not matter what support you have you still have to advocate all the time (I should have screeched sooner and louder), sigh. p.s. Keytruda works so well for so many, this really isn't all that rare but shouldn't discourage others from trying this treatment. It gives many, many patients more quality time.
Hugs

REPLY
@colleenyoung

@cindylb, cancer treatment-induced heart disease does happen. There is a discussion on Mayo Clinic Connect dedicated to it here:
– Cancer Treatment Induced Heart Disease https://connect.mayoclinic.org/discussion/radiation-induced-heart-disease/

In fact, many major cancer centers have clinics specifically dealing with cardio-oncology. Mayo cardiologists published this paper on the topic back in 2014
– Evaluation and Management of Patients With Heart Disease and Cancer: Cardio-Oncology https://www.mayoclinicproceedings.org/article/S0025-6196(14)00475-3/pdf

The cancer education team also posted a related blog and video here on Mayo Clinic Connect. See
– Cancer Treatment and the Heart https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/cancer-treatment-and-the-heart-1/

Might there be a Cardio-Oncology clinic at the hospital where your husband is treated?

Jump to this post

Thank you Colleen @colleenyoung for these great resources. This helps a great deal. I wasn't sure if I was on the right track here, guess so.

Hugs

REPLY
@cindylb

THANK YOU!! We've confirmed that my husband has serious heart problems (as of today) due to immunotherapy. Sigh………..

Jump to this post

@cindylb, checking in. How is your husband doing?

Liked by cindylb

REPLY
@colleenyoung

@cindylb, checking in. How is your husband doing?

Jump to this post

Colleen – so good to hear from you and thank you for checking in with me. First, I hope you're doing well. The past year has been so hard for everyone. Do send me an update.
My husband is on a 'cancer holiday' – kind of a misnomer isn't it? Ha ha. We have stopped treatment until his next PET scan in early March and then we'll reevaluate. The full chemo, radiation and immunotherapy treatment worked well enough to push back the spread of the cancer to his bones and center lymph node and chest, which was making it hard for him to breath. The maintenance treatment of light chemo and immunotherapy (Keytruda) did not work and the cancer spread again. The Keytruda was a bit of a gamble because they still don't really understand his cancer or the type of cancer. I suppose chemo works on most any kind of cancer – the type they used treats many cancers, so…………. The immunotherapy did however give him Atrial Fibrillation of the heart. It took 9 weeks to determine that he had the heart condition but the meds are keeping it under control. I guess that's the unfortunate trade off. My husband is a tolerant and tough guy and he bears it all well. I on the other hand have turned into a shrew, ha ha. We're going into year five of his cancer with no more answers than we had and no more hope and I'm tired of doctors (and I'm pretty sure they're tired of me). My health has been better this past year since I had the sepsis, so I'm grateful to be well enough to care for him, his Mom and my Mom. I'm pretty sure I'll be getting my honorary "Google Doctor on TV" award soon! Still trying to get the Covid Vaccine. It's a slow, frustrating roll out here in Colorado (perhaps other places too). Hopefully in the next couple of months. That will take a load off my mind. I worry every time I leave the house to run errands or go to doctor visits I'll get the stupid virus and kill everyone I know, sigh. I know there are lots of people out there who feel the same. Good news though…my daughter is engaged to a wonderful guy and provided the virus behaves, she'll get married in August……..Hugs and thanks again for keeping in touch with me. The Mayo site is still so helpful for me, as it it for so many.

REPLY
@cindylb

Colleen – so good to hear from you and thank you for checking in with me. First, I hope you're doing well. The past year has been so hard for everyone. Do send me an update.
My husband is on a 'cancer holiday' – kind of a misnomer isn't it? Ha ha. We have stopped treatment until his next PET scan in early March and then we'll reevaluate. The full chemo, radiation and immunotherapy treatment worked well enough to push back the spread of the cancer to his bones and center lymph node and chest, which was making it hard for him to breath. The maintenance treatment of light chemo and immunotherapy (Keytruda) did not work and the cancer spread again. The Keytruda was a bit of a gamble because they still don't really understand his cancer or the type of cancer. I suppose chemo works on most any kind of cancer – the type they used treats many cancers, so…………. The immunotherapy did however give him Atrial Fibrillation of the heart. It took 9 weeks to determine that he had the heart condition but the meds are keeping it under control. I guess that's the unfortunate trade off. My husband is a tolerant and tough guy and he bears it all well. I on the other hand have turned into a shrew, ha ha. We're going into year five of his cancer with no more answers than we had and no more hope and I'm tired of doctors (and I'm pretty sure they're tired of me). My health has been better this past year since I had the sepsis, so I'm grateful to be well enough to care for him, his Mom and my Mom. I'm pretty sure I'll be getting my honorary "Google Doctor on TV" award soon! Still trying to get the Covid Vaccine. It's a slow, frustrating roll out here in Colorado (perhaps other places too). Hopefully in the next couple of months. That will take a load off my mind. I worry every time I leave the house to run errands or go to doctor visits I'll get the stupid virus and kill everyone I know, sigh. I know there are lots of people out there who feel the same. Good news though…my daughter is engaged to a wonderful guy and provided the virus behaves, she'll get married in August……..Hugs and thanks again for keeping in touch with me. The Mayo site is still so helpful for me, as it it for so many.

Jump to this post

@cindylb– It is so good to hear of a respite for your husband, and that you are doing well.

Liked by cindylb

REPLY
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