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.

I am on Keytruda since January 2019. My last scan showed the cancer on my liver and lymph nodes is gone and the cancer in my lung is shrinking. I pray and pray that I don't have to ever do chemo. It's hard to stay positive but it truly helps.

Liked by jenmed0157, edb

REPLY
@edb

Hello everyone,

Wishing you and your loved ones peace, and healing.

My wife was diagnosed with stage 4 lung cancer in January 2019. Not wanting to wait potentially weeks on her genetic testing results, her oncologist opted to start her right away on Keytruda & two chemotherapies (alimta & ?). She did very well through 13 treatments, experiencing steady regression to what could technically be termed partial remission with little or no side effects. She’s started her own successful part-time career coaching business and we’re very grateful!

The last 3 treatments saw her deal with increasing sluggishness in her digestive process post-treatment, to the point of recently dealing with moderate abdominal pain within minutes of eating & increasing constipation. It got bad enough where we finally experimented with a 24-hour clear liquid/jello fast, which seem to help to reset her digestive system without drugs. She’s pain-free currently and back on a regular diet.

Around this same time she had a CT scan based on her digestive issues which showed steady state in her previously affected cancerous areas, but an increase in size in several lymph nodes in her abdominal region – a new development. Her oncologist has decided to stop immunotherapy/chemotherapy for now, monitor the new lymph node activity via scan, get a biopsy of the lymph nodes if needed, and potentially switch to genetic treatment if necessary (she tested 67% positive for ROS1 expression).

Which is a looonng way to my question: what are your experiences with swollen lymph nodes related to immunotherapy? Obviously we’re hoping this is her body simply saying “enough treatment for now” and not an unwanted new twist in the plot. But I haven’t been able to find much info on patient experiences with swollen lymph nodes related directly to immunotherapy in general, or Keytruda in particular.

Thankful for whatever you share,

Ed

Jump to this post

I’m one month behind your wife and was on same chemo and immune treatment. The last three treatments (21 days per treatment) I’ve had the same digestive problems. I’m also on OxyContin 24-7 so I’ve been watching to make sure things keep moving. Must say I have cramps bad one day and within 5-7 hours I have blow outs than ok. Go back 27Th of January for blood work and Scan to see what’s happening.right lung tumor 4 stage cancer, nodules in kidney, stomach and cells in left lung. Was interesting to her my problems are not unusal. Thank you!🙏🏻

Liked by Lisa Lucier

REPLY
@richcolleen

I’m one month behind your wife and was on same chemo and immune treatment. The last three treatments (21 days per treatment) I’ve had the same digestive problems. I’m also on OxyContin 24-7 so I’ve been watching to make sure things keep moving. Must say I have cramps bad one day and within 5-7 hours I have blow outs than ok. Go back 27Th of January for blood work and Scan to see what’s happening.right lung tumor 4 stage cancer, nodules in kidney, stomach and cells in left lung. Was interesting to her my problems are not unusal. Thank you!🙏🏻

Jump to this post

Hi @richcolleen,

Thanks so much for responding! 🙏 It’s helpful to learn other people are experiencing similar symptoms and reactions during treatment. Although we’re each an experiment of one, we’re also not alone.

As I mentioned, a 24-hour clear broth/sugarless jello fast seemed to help her system press reset when the pain was getting bad. That was on our own initiative, not our doctor’s, so I’d say anyone who thinks they might like to experiment with such a diet to relieve a “stuck/overheated” digestive system do so with caution.

Since her newly swollen lymph nodes are in her abdominal area and her digestive issues seem to have resolved themselves for now, we’re wondering if it’s possible that the swollen nodes + her stomach issues weren’t a reaction to the immunotherapy that built up over time. A PET scan report as recent as October made no mention of increased lymph node activity and even showed lessening of activity.

Her Dr said there’s a lot about immunotherapy reactions we just don’t know with any real certainty yet. We’ll hopefully know more in late Jan/early Feb, but in the meantime I’ll keep looking for anecdotal info on real-life experiences with swollen lymph nodes related directly to reactions to immunotherapy. I do know it’s listed as a possible side effect with Keytruda.

Wishing you the best in 2020!

REPLY

Hello everyone,

Wishing you and your loved ones peace, and healing.

My wife was diagnosed with stage 4 lung cancer in January 2019. Not wanting to wait potentially weeks on her genetic testing results, her oncologist opted to start her right away on Keytruda & two chemotherapies (alimta & ?). She did very well through 13 treatments, experiencing steady regression to what could technically be termed partial remission with little or no side effects. She’s started her own successful part-time career coaching business and we’re very grateful!

The last 3 treatments saw her deal with increasing sluggishness in her digestive process post-treatment, to the point of recently dealing with moderate abdominal pain within minutes of eating & increasing constipation. It got bad enough where we finally experimented with a 24-hour clear liquid/jello fast, which seem to help to reset her digestive system without drugs. She’s pain-free currently and back on a regular diet.

Around this same time she had a CT scan based on her digestive issues which showed steady state in her previously affected cancerous areas, but an increase in size in several lymph nodes in her abdominal region – a new development. Her oncologist has decided to stop immunotherapy/chemotherapy for now, monitor the new lymph node activity via scan, get a biopsy of the lymph nodes if needed, and potentially switch to genetic treatment if necessary (she tested 67% positive for ROS1 expression).

Which is a looonng way to my question: what are your experiences with swollen lymph nodes related to immunotherapy? Obviously we’re hoping this is her body simply saying “enough treatment for now” and not an unwanted new twist in the plot. But I haven’t been able to find much info on patient experiences with swollen lymph nodes related directly to immunotherapy in general, or Keytruda in particular.

Thankful for whatever you share,

Ed

Liked by Lisa Lucier

REPLY
@edb

Hello everyone,

Wishing you and your loved ones peace, and healing.

My wife was diagnosed with stage 4 lung cancer in January 2019. Not wanting to wait potentially weeks on her genetic testing results, her oncologist opted to start her right away on Keytruda & two chemotherapies (alimta & ?). She did very well through 13 treatments, experiencing steady regression to what could technically be termed partial remission with little or no side effects. She’s started her own successful part-time career coaching business and we’re very grateful!

The last 3 treatments saw her deal with increasing sluggishness in her digestive process post-treatment, to the point of recently dealing with moderate abdominal pain within minutes of eating & increasing constipation. It got bad enough where we finally experimented with a 24-hour clear liquid/jello fast, which seem to help to reset her digestive system without drugs. She’s pain-free currently and back on a regular diet.

Around this same time she had a CT scan based on her digestive issues which showed steady state in her previously affected cancerous areas, but an increase in size in several lymph nodes in her abdominal region – a new development. Her oncologist has decided to stop immunotherapy/chemotherapy for now, monitor the new lymph node activity via scan, get a biopsy of the lymph nodes if needed, and potentially switch to genetic treatment if necessary (she tested 67% positive for ROS1 expression).

Which is a looonng way to my question: what are your experiences with swollen lymph nodes related to immunotherapy? Obviously we’re hoping this is her body simply saying “enough treatment for now” and not an unwanted new twist in the plot. But I haven’t been able to find much info on patient experiences with swollen lymph nodes related directly to immunotherapy in general, or Keytruda in particular.

Thankful for whatever you share,

Ed

Jump to this post

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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If you’re asking me I do have appointment on the 27Th and 28th for scan and blood work after 4 treatments of the keytruda only at the Mayo in Rochester, MN.

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@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

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!

Liked by Lisa Lucier

REPLY
@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.

Liked by edb

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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?

REPLY
@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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