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After Keytruda, what's next?

Posted by liz8716 @liz8716, Aug 28, 2019

@merpreb ...Hi, my name is Elizabeth. 31 yrs old.I was diagnosed with stage IV nsclc in April. I saw your story on here and it has given me hope. I'm currently on keytruda. Unfortunately my oncologist at this time says there is no cure and that keytruda can only be administered for 2 years. That she is only helping me live longer at this point because there is no cure. I did have taxol and carboplatin (4 rounds). My tumors have shrunk. But when I ask the dr "what next after 2 years of keytruda she says we'll wait and see. It's sort frustrating. I have to ask. What was your treatment?? Because the 5 year mark almost sounds impossible from what my dr states. Or if anyone else here knows of any new treatments.

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

cobraguy223 | @cobraguy223 | Aug 21, 2021
In reply to @colleenyoung "Hi Cobraguy, I, too, would be angry at getting bad info, being sent in 20 different..." + (show)
@colleenyoung

Hi Cobraguy, I, too, would be angry at getting bad info, being sent in 20 different directions, and having to endure the consequences of medical error. And now, on top of it all, you're experiencing side effects from Keytruda treatments.

There's much about your situation that members in this online forum can't change. But we are here and we are listening. Maybe we can help by offering suggestions to ease the side effects you are experiencing. What side effect are you finding the hardest to manage?

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I just got first KEYTRUDA yesterday, no side affects noticed yet! I'm actually still irritated from 10 shots of Radiation on my spine! Inflamed intestines etc

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 23, 2021
In reply to @carlies "My husband has had lots of chemo and along with it worsening chemo brain. Currently he’s..." + (show)
@carlies

My husband has had lots of chemo and along with it worsening chemo brain. Currently he’s off chemo. Any recommendations to help with the chemo brain? Thank you.

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Carlie, you may also be interested in the tips members share in this related discussion in the Cancer: Managing Symptoms group:
- Cancer Related Brain Fog: How do you cope with it? https://connect.mayoclinic.org/discussion/cancer-related-brain-fog/

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manorbier | @manorbier | Sep 1, 2021

Elizabeth, Sounds like you are in the same boat as me, but I'm 65. Diagnosed with st. 4 NSCLC and MAC in October 2020. I was on Keytruda, Alimta and Carboplatin from December until May with the same no hope story as you. My tumors(or MAC) growing so I was switched to Ramucirumab and Docetaxel, which I was taken off last week, due to tumors still growing, and I am now on the Big 3 for MAC infection. Apparently they cannot tell the difference. We all have to keep hoping we survive long enough for a new cure before we pass. Early tests with ivermectin(horse wormer) look very promising. I also read something about a new thing called a med bed, but little info out there on this. You have youth on your side so don't give up!

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richcolleen | @richcolleen | Sep 4, 2021

I too have stage 4 lung cancer. Did the chemo treatments for 8 treatments and after 9th said that’s it. (Was sick for 10 days recouped next 10 and went back for more) no more. Was put on Keytruda and my 2 years are up end of next month. Was just at Mayo for check up every 3 months and asked about what next. Was told that starting in November no more infusion and see what happens. I still have tumor in left lung. Nodules and cells in kidneys, stomach and left lung which have not increased in last two scans. Guess I outlived their expectations and had the best summer since diagnosed. No fractured vertebrae’s this year. Should not say that out load. Last year and half had 5 due to osteoporosis and chemo makes bones brittle. Turning wrong or lifting 5 lbs does it to me. Good luck to you.🙏🏻

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Merry, Alumni Mentor | @merpreb | Sep 4, 2021

Hello Elizabeth and welcome to Mayo Clinic Connect. I wish that Keytruda was given for longer periods of time. There have been, and are still, many trials with Keytruda. Over 80% of patients show a 5-year cancer-free period after Keytruda has been stopped.
https://www.pmlive.com/pharma_news/keytruda_doubles_five-year_survival_rate_in_nsclc_1351160
https://northtexascancercenteratwise.com/useful-articles/metastatic-lung-cancer-stop-immunotherapy/

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loula | @loula | Sep 15, 2021

Hello to everyone, went to the oncologist today had my 3 month ct scan done day before , results came back keytruda is not working for me my lung rumor has grown in size 2.5 so no more keytruda I had more blood work taken I think for biomarker testing will take some time to come back in the meantime they are to start Cryamza and Taxotere. I asked him about my liver and he said no change there which I will be asking about that again I would like to see some pictures of that. I was so upset with the news I just let it go. you get so nervous hearing treatment is not working that nothing else sinks in. needless to say I am staying strong and will get through this with the grace of god. has anyone taken Taxotere and Cyramza ? I had taken Carbo and Taxol and it seemed to shrink my tumors was over that treatment in April with staying on the Keytruda. here we go again stay with me folks!

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 15, 2021
In reply to @loula "Hello to everyone, went to the oncologist today had my 3 month ct scan done day..." + (show)
@loula

Hello to everyone, went to the oncologist today had my 3 month ct scan done day before , results came back keytruda is not working for me my lung rumor has grown in size 2.5 so no more keytruda I had more blood work taken I think for biomarker testing will take some time to come back in the meantime they are to start Cryamza and Taxotere. I asked him about my liver and he said no change there which I will be asking about that again I would like to see some pictures of that. I was so upset with the news I just let it go. you get so nervous hearing treatment is not working that nothing else sinks in. needless to say I am staying strong and will get through this with the grace of god. has anyone taken Taxotere and Cyramza ? I had taken Carbo and Taxol and it seemed to shrink my tumors was over that treatment in April with staying on the Keytruda. here we go again stay with me folks!

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Loula, that is tough news to take in. I believe @manorbier has had treatment with Taxotere (docetaxel) and Cyramza (ramucirumab).
Sending you a gentle virtual embrace.

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richcolleen | @richcolleen | Sep 16, 2021
In reply to @loula "Hello to everyone, went to the oncologist today had my 3 month ct scan done day..." + (show)
@loula

Hello to everyone, went to the oncologist today had my 3 month ct scan done day before , results came back keytruda is not working for me my lung rumor has grown in size 2.5 so no more keytruda I had more blood work taken I think for biomarker testing will take some time to come back in the meantime they are to start Cryamza and Taxotere. I asked him about my liver and he said no change there which I will be asking about that again I would like to see some pictures of that. I was so upset with the news I just let it go. you get so nervous hearing treatment is not working that nothing else sinks in. needless to say I am staying strong and will get through this with the grace of god. has anyone taken Taxotere and Cyramza ? I had taken Carbo and Taxol and it seemed to shrink my tumors was over that treatment in April with staying on the Keytruda. here we go again stay with me folks!

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Trust that they will try something that works. Ask for Prayers you got mine!

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manorbier | @manorbier | Sep 16, 2021
In reply to @loula "Hello to everyone, went to the oncologist today had my 3 month ct scan done day..." + (show)
@loula

Hello to everyone, went to the oncologist today had my 3 month ct scan done day before , results came back keytruda is not working for me my lung rumor has grown in size 2.5 so no more keytruda I had more blood work taken I think for biomarker testing will take some time to come back in the meantime they are to start Cryamza and Taxotere. I asked him about my liver and he said no change there which I will be asking about that again I would like to see some pictures of that. I was so upset with the news I just let it go. you get so nervous hearing treatment is not working that nothing else sinks in. needless to say I am staying strong and will get through this with the grace of god. has anyone taken Taxotere and Cyramza ? I had taken Carbo and Taxol and it seemed to shrink my tumors was over that treatment in April with staying on the Keytruda. here we go again stay with me folks!

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Hi Loula, Sounds as though you are following a similar path to me, but at least your tumors are shrinking, so stay positive and remain as active as you are able. Don't give up hope, as the oncologists have a number of options still.
I have tumors in both lungs and central lymph nodes, and a MAC infection too. I was put on Keytruda, Alimta and Carboplatin in December , but my tumors were still growing so I was switched to Ramucirumab and Docetaxel in June, on which I found the side effects more uncomfortable, and most of my hair fell out the first week! That did nothing for me either so I was taken off last month and switched to the Big 3 for MAC. Don't be disheartened by my story-CT and PET scans do not show tumors and MAC any different, so the doctors do not know, but one or the other is spreading and cannot be treated at the same time, hence the switch for me for a month or two to see what happens.
Keep smiling, praying and be positive.

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1 reply
loula | @loula | Sep 16, 2021
In reply to @manorbier "Hi Loula, Sounds as though you are following a similar path to me, but at least..." + (show)
@manorbier

Hi Loula, Sounds as though you are following a similar path to me, but at least your tumors are shrinking, so stay positive and remain as active as you are able. Don't give up hope, as the oncologists have a number of options still.
I have tumors in both lungs and central lymph nodes, and a MAC infection too. I was put on Keytruda, Alimta and Carboplatin in December , but my tumors were still growing so I was switched to Ramucirumab and Docetaxel in June, on which I found the side effects more uncomfortable, and most of my hair fell out the first week! That did nothing for me either so I was taken off last month and switched to the Big 3 for MAC. Don't be disheartened by my story-CT and PET scans do not show tumors and MAC any different, so the doctors do not know, but one or the other is spreading and cannot be treated at the same time, hence the switch for me for a month or two to see what happens.
Keep smiling, praying and be positive.

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Thanks for letting me know, and you also stay positive and strong please keep us informed of what is happening. and I will keep you in my prayers.

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