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.

Interested in more discussions like this? Go to the Lung Cancer group.

@lisalucier

Hi, @edb – glad you connected with @richcolleen. I wanted to let you know I've moved your post here to an existing thread, "Immunotherapy and chemo; Keytruda side effects," so that you can connect with others here also talking about this topic.

Please meet @ina3 @schmeeckle64 @hopeful33250 @2onlow8 @doughy42 and others.

You indicated you'd know more in late Jan/early Feb. Do you have another appointment with the oncologist at that time? Genetic testing results?

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Hi Lisa,

Thank you! We received gene test results back in February 2019 after my wife had already started on Keytruda (the Dr didn’t want to stall treatment while awaiting gene test results). Her test showed a 60% expression for PDL1 and a 67% expression for ROS1.

She did very well on Keytruda for the first 13 cycles or so; partial remission with virtually no side effects. The last three cycles she began to experience a very gradual slowing down in her digestive system, despite continuing good results from her scans. After the last cycle she experienced moderate pain in her gut for the first time, sometimes almost immediately after eating. We ordered a scan and in the meantime tried a 24-hour clear liquid/jello fast to try to press reset. This definitely helped and she’s pain-free today and back on a regular diet. Feels fine in fact. Bloodwork as of last Friday is excellent.

All of this is a head-scratcher for her oncologist bc the most recent scan (while she was having the abdominal pain) shows newly swollen lymph nodes in her abdominal area. All of her previous affected areas show mild shrinkage to steady state. She also got an A+ on her last PET scan in October, and she feels much better now than she even did a week ago.

So for now we’re suspending treatment, watching the lymph nodes in the abdomen, and will go back for a visit (and probably another scan) in the mid-January timeframe. We do know we have the unused ROS1 genetic therapy in our back pocket if we need it.

Which is a long way back to my original question: what experiences, if any, have people had with swollen lymph nodes linked to their Keytruda treatment? I know it’s a possible side effect; I was just looking for real-life examples. @richcolleen seems to have had similar symptoms to my wife at about the same stage of the same treatment regimen (!), which was definitely helpful to learn. But I’d love to hear from people with real-life experiences of swollen lymph nodes linked to their Keytruda treatment.

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@edb

Hi Lisa,

Thank you! We received gene test results back in February 2019 after my wife had already started on Keytruda (the Dr didn’t want to stall treatment while awaiting gene test results). Her test showed a 60% expression for PDL1 and a 67% expression for ROS1.

She did very well on Keytruda for the first 13 cycles or so; partial remission with virtually no side effects. The last three cycles she began to experience a very gradual slowing down in her digestive system, despite continuing good results from her scans. After the last cycle she experienced moderate pain in her gut for the first time, sometimes almost immediately after eating. We ordered a scan and in the meantime tried a 24-hour clear liquid/jello fast to try to press reset. This definitely helped and she’s pain-free today and back on a regular diet. Feels fine in fact. Bloodwork as of last Friday is excellent.

All of this is a head-scratcher for her oncologist bc the most recent scan (while she was having the abdominal pain) shows newly swollen lymph nodes in her abdominal area. All of her previous affected areas show mild shrinkage to steady state. She also got an A+ on her last PET scan in October, and she feels much better now than she even did a week ago.

So for now we’re suspending treatment, watching the lymph nodes in the abdomen, and will go back for a visit (and probably another scan) in the mid-January timeframe. We do know we have the unused ROS1 genetic therapy in our back pocket if we need it.

Which is a long way back to my original question: what experiences, if any, have people had with swollen lymph nodes linked to their Keytruda treatment? I know it’s a possible side effect; I was just looking for real-life examples. @richcolleen seems to have had similar symptoms to my wife at about the same stage of the same treatment regimen (!), which was definitely helpful to learn. But I’d love to hear from people with real-life experiences of swollen lymph nodes linked to their Keytruda treatment.

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Hi, @edb – thanks for clarifying her status. @merpreb may also know about this situation with swollen lymph nodes linked to pembrolizumabm (Keytruda) treatment for lung cancer, so I'd like to invite her into this conversation.

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@lisalucier

Hi, @edb – thanks for clarifying her status. @merpreb may also know about this situation with swollen lymph nodes linked to pembrolizumabm (Keytruda) treatment for lung cancer, so I'd like to invite her into this conversation.

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@lisalucier– Good morning @edb– How are you holding up? Swollen lymph nodes are common with certain cancers and esp. lung cancer. They could indicate trouble or are just reacting to what is going on around them, or an infection I have a couple of swollen nodes. They indicate that they need a look at by a doctor! I have only had chemo and during that time everything seemed to be off, my blood count, my energy, my appetite.
This article might help you understand more:
https://www.curetoday.com/publications/cure/2016/melanoma-2016-2/in-watching-for-the-side-effects-of-immunotherapy-you-are-your-own-first-line-of-defense
Here's more: https://www.keytruda.com/side-effects/
https://www.curetoday.com/publications/cure/2016/melanoma-2016-2/in-watching-for-the-side-effects-of-immunotherapy-you-are-your-own-first-line-of-defense
How are you holding up? There is a lot of good news with her test results!

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@merpreb

@lisalucier– Good morning @edb– How are you holding up? Swollen lymph nodes are common with certain cancers and esp. lung cancer. They could indicate trouble or are just reacting to what is going on around them, or an infection I have a couple of swollen nodes. They indicate that they need a look at by a doctor! I have only had chemo and during that time everything seemed to be off, my blood count, my energy, my appetite.
This article might help you understand more:
https://www.curetoday.com/publications/cure/2016/melanoma-2016-2/in-watching-for-the-side-effects-of-immunotherapy-you-are-your-own-first-line-of-defense
Here's more: https://www.keytruda.com/side-effects/
https://www.curetoday.com/publications/cure/2016/melanoma-2016-2/in-watching-for-the-side-effects-of-immunotherapy-you-are-your-own-first-line-of-defense
How are you holding up? There is a lot of good news with her test results!

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Hi Merry,

You’re so kind for responding; thank you. I hope you are doing well.

We’re doing good here. At this point we don’t think it’s unreasonable to suspect this has been triggered by a gradually building reaction in her abdomen over time to her Keytruda-alimta therapy, but of course a scan later in January will tell us a lot more. She’s done so well since starting treatment in January 2019 that it’s sort of selfish not to expect at the very least a hiccup or two, if that is all it is. But her appetite is good and she feels normal otherwise, so blessings counted.

Thanks for the additional information. I did read on another forum about a melanoma survivor who experienced multiple swollen lymph nodes from her Opdivo treatments. Several would swell, calm down, and others would pop up elsewhere, etc. So we’ll just cross our fingers and hope it’s treatment-related.

Thanks again.

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I’m having my scan done at Mayo on 27Th of Jan. Will be curious what mine will come up with also. Quit chemo treatment and on immunotherapy only for 4 treatments than scan to see what tumor, nodules and cells are doing. Used to get really sick from the 3 different chemo’s infusions and immunotherapy decided to go for quality rather than quantity.
Where are you having scans done?
Colleen

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Good morning @edb. I have been on Keytruda for just about a year now. The only side effect, which just started about a month ago, is a rash. Pretty much all over my body. Even on my scalp. My pdl-1 levels were very high so we decided just to do the Keytruda and no chemo. Just had a scan a couple weeks ago and there is a very small amount of activity on my right lung, small amount on the lymphe node on my neck. We are going to start radiation on my hip the first part of January since that is where must of the activity is showing up. The best advise I can give you is to stay positive and find strength and comfort in God. He truly works miracles. The very very best to you and your wife. Sending prayers.

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I am not, as of today, a candidate for immune therapy should I need it. I have what is called Multifocal Adenocarcinoma of the lung and for some reason, my type of cancer doesn't respond. I certainly hope that this changes. But I know that many of you take Keytruda. The FDA has approved a higher dose taken less frequently.:https://www.curetoday.com/articles/fda-approves-higher-dose-of-keytruda-across-all-indicated-cancer-types.
Have any of you who are on this medicine been given the new protocol? How are you responding?

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@merpreb

I am not, as of today, a candidate for immune therapy should I need it. I have what is called Multifocal Adenocarcinoma of the lung and for some reason, my type of cancer doesn't respond. I certainly hope that this changes. But I know that many of you take Keytruda. The FDA has approved a higher dose taken less frequently.:https://www.curetoday.com/articles/fda-approves-higher-dose-of-keytruda-across-all-indicated-cancer-types.
Have any of you who are on this medicine been given the new protocol? How are you responding?

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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.

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I’ve been on Keytruda since December every 21 days. Have not been given higher doze.

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@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.

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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.

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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

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@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

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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.

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