1. < Lung Cancer

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 Support Group.

edb | @edb | Dec 24, 2019
In reply to @richcolleen "I’m one month behind your wife and was on same chemo and immune treatment. The last..." + (show)
@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!🙏🏻

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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
richcolleen | @richcolleen | Dec 24, 2019
In reply to @edb "Hello everyone, Wishing you and your loved ones peace, and healing. My wife was diagnosed with..." + (show)
@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!🙏🏻

REPLY
1 reply
schmeeckle64 | @schmeeckle64 | Oct 20, 2019

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.

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2 replies
richcolleen | @richcolleen | Oct 20, 2019

I’m on same and will find out if it’s still helping or go to next stage the 4th and 5th of November.

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2onlow8 | @2onlow8 | Oct 20, 2019
In reply to @2onlow8 "Hoping for another great scan for you. Keep us updated!" + (show)
@2onlow8

Hoping for another great scan for you. Keep us updated!

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Alimta and Keytruda are not keeping cancer from growing. I get a new scan 11/1 and will probably get Crizotinib from now on. Am told I have few options left. Does anyone have any experience with this targeted therapy?

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2onlow8 | @2onlow8 | Oct 8, 2019
In reply to @richcolleen "No I have not but on November 4th have my next cat scan I will. Last..." + (show)
@richcolleen

No I have not but on November 4th have my next cat scan I will. Last time tumor and nodules stayed the same.

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Hoping for another great scan for you. Keep us updated!

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1 reply
richcolleen | @richcolleen | Oct 8, 2019

No I have not but on November 4th have my next cat scan I will. Last time tumor and nodules stayed the same.

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1 reply
2onlow8 | @2onlow8 | Oct 8, 2019
In reply to @richcolleen "Good Morning! I have been getting chemo, immunotherapy and Keytruda. Had 8 treatments so far every..." + (show)
@richcolleen

Good Morning! I have been getting chemo, immunotherapy and Keytruda. Had 8 treatments so far every 21 days. I did skip one full treatment was tired of being sick 8- 10 days and try to recover next 10. Only food I ate was when I took my pills like crackers. Wait 5 minutes and if they stayed down than would take pills. Just got very weak. Go back for next cocktail on the 14th. Next scan on November 4th to see if tumor stayed the same or growing. I have same cancer your dad does but was told by 4 different cancer Drs it is not curable but treatable to keep me comfortable.

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@richcolleen I am in same situation as you, just had my 3rd infusion of Keytruda added to my 10th Alimta (Chemo) treatment. Trying to keep cancer from growing, and it has slowed progression, and I should find out if it’s all stopping growth in a few days. I too am now out of commission 7 days out of each 21-day cycle. Have you discussed with your oncologist what the next step would be when current treatments stop working?

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1 reply
richcolleen | @richcolleen | Oct 8, 2019

Good Morning! I have been getting chemo, immunotherapy and Keytruda. Had 8 treatments so far every 21 days. I did skip one full treatment was tired of being sick 8- 10 days and try to recover next 10. Only food I ate was when I took my pills like crackers. Wait 5 minutes and if they stayed down than would take pills. Just got very weak. Go back for next cocktail on the 14th. Next scan on November 4th to see if tumor stayed the same or growing. I have same cancer your dad does but was told by 4 different cancer Drs it is not curable but treatable to keep me comfortable.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 16, 2019
In reply to @richcolleen "I’ve been on same treatment same lung cancer but mine had spread. These treatments are giving..." + (show)
@richcolleen

I’ve been on same treatment same lung cancer but mine had spread. These treatments are giving me the best quality of life possible as I will not beat this. I’ve accepted it and living the best I can. I’m also on OxyContin which I take every 12 hours. The Mayo Clinic does scan every 3 months. My tumor was massive and 3 nodules. Tumor has shrunk in half and nodules have stayed the same. These treatments wear me out so right know I’m on 2 weeks rest (which means no treatments) feeling good and got energy back. The 23rd I will start my treatments again.

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Hi @richcolleen, I thought you might appreciate knowing about this discussion in the Cancer group:
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Enjoy your treatment vacation. Are you finding that with some of the returning energy, you’re able to do things that bring you joy? Want to share?

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