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.

@carebears91

Thank you. After reading another website on how some patients have been on Keytruda for more than 2 years it makes me wonder if they did not leave him on it long enough. He had Taxol with it to give it a boost, but they said neither was working. I feel that they should have left him on the Keytruda and added radioisotopes with that.

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It is my understanding from my oncologist that the two-year timeframe with Keytruda is based on the length of the original trial which was two years. Some insurance companies will not pay for treatment based on the length of the original trial while others continue to pay based on patient response.
Also, Keytruda itself will not "kill" cancer; it eliminates the inhibitors that are preventing the immune system from doing its job and removing the cancer cells. If they are saying Keytruda isn't working they are probably saying the immune system still isn't responding the way it is supposed to. Keytruda will only be effective on those cells that are checkpoint inhibitor positive which, it sounds like, may only be a portion of his whole situation.

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@carebears91

Thank you. After reading another website on how some patients have been on Keytruda for more than 2 years it makes me wonder if they did not leave him on it long enough. He had Taxol with it to give it a boost, but they said neither was working. I feel that they should have left him on the Keytruda and added radioisotopes with that.

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It sounds like you have prepared some grest questions for the next appointment with the doctors. I hope you appointment goes well and you get some clarity on the approach that they are taking.

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@colleenyoung

@carebears91, I moved your questions to this existing discussion called:
- After Keytruda, what's next? https://connect.mayoclinic.org/discussion/keytruda-1/

I did this so you can connect with fellow members who have non small-cell lung cancer and had to consider treatment options other thay Keytruda like @lls8000 @richcolleen @jannad @liz8716 @bentrivercarla @schmeeckle64 and @2onlow8

I encourage you to ask your questions to your oncologist and share your thoughts about not changing medications, especially Keytruda. Your oncologist can consider you and your husband's preferences and also explain the mechanisms of action if this is not they way Keytruda works.

You may appreciate reading @merpreb's post about questions to ask the oncologist here: https://connect.mayoclinic.org/comment/273866/

There may be other options for your husband. I always say, keep asking questions until you understand the "why" and are comfortable moving forward.

Jump to this post

Thank you. After reading another website on how some patients have been on Keytruda for more than 2 years it makes me wonder if they did not leave him on it long enough. He had Taxol with it to give it a boost, but they said neither was working. I feel that they should have left him on the Keytruda and added radioisotopes with that.

REPLY
@carebears91

My husband was diagnosed with non small cell lung cancer over a year ago. He had platinum therapy; it spread to his bones; Keytruda & Taxol to give the Keytruda a boost. Per his oncologist here and at Duke, the Keytruda was not working so they took him off of everything & for 6 weeks had no treatments while they decided what to do next. I disagree with taking him off of the Keytruda. He had no new lesions with it and one small spot on his liver 4 months ago. He has had 3 radioisotope therapies; had scans on 4/15 and now has multiple lesions on his liver, a new lesion & has 1 lesion in his spine and one in his pelvic bone that needs pin point radiation. The radiologist said that the liver is not as big as a concern as the other 2 lesions as 8mm is 1/3 inch. He said he can continue the radioisotopes with radiation as it has helped some with his pain. I disagreed with taking him off of everything before his current treatments. We were told by his doctor at Duke that the Keytruda was working and that it was hardening the bones and slowing the growth of the tumors. He had not been on it for a year when they took him off of it. Could he go back on the Keytruda while another treatment option is checked on? They have mentioned clinical trials, but I do not want him to be taken completely off of everything while waiting. I am not a doctor, but common sense tells me that the Keytruda could at least keep it at bay while waiting and he had no side effects and it does boost the immune system. Would Opdivo+ Yervoy be an option? A clinical trial may take a while and I do not want to give it a chance to grow even more while we wait. It is so hard to see him with this terrible disease and I know others are dealing with it too.

Jump to this post

@carebears91, I moved your questions to this existing discussion called:
- After Keytruda, what's next? https://connect.mayoclinic.org/discussion/keytruda-1/

I did this so you can connect with fellow members who have non small-cell lung cancer and had to consider treatment options other thay Keytruda like @lls8000 @richcolleen @jannad @liz8716 @bentrivercarla @schmeeckle64 and @2onlow8

I encourage you to ask your questions to your oncologist and share your thoughts about not changing medications, especially Keytruda. Your oncologist can consider you and your husband's preferences and also explain the mechanisms of action if this is not they way Keytruda works.

You may appreciate reading @merpreb's post about questions to ask the oncologist here: https://connect.mayoclinic.org/comment/273866/

There may be other options for your husband. I always say, keep asking questions until you understand the "why" and are comfortable moving forward.

REPLY
@carebears91

My husband was diagnosed with non small cell lung cancer over a year ago. He had platinum therapy; it spread to his bones; Keytruda & Taxol to give the Keytruda a boost. Per his oncologist here and at Duke, the Keytruda was not working so they took him off of everything & for 6 weeks had no treatments while they decided what to do next. I disagree with taking him off of the Keytruda. He had no new lesions with it and one small spot on his liver 4 months ago. He has had 3 radioisotope therapies; had scans on 4/15 and now has multiple lesions on his liver, a new lesion & has 1 lesion in his spine and one in his pelvic bone that needs pin point radiation. The radiologist said that the liver is not as big as a concern as the other 2 lesions as 8mm is 1/3 inch. He said he can continue the radioisotopes with radiation as it has helped some with his pain. I disagreed with taking him off of everything before his current treatments. We were told by his doctor at Duke that the Keytruda was working and that it was hardening the bones and slowing the growth of the tumors. He had not been on it for a year when they took him off of it. Could he go back on the Keytruda while another treatment option is checked on? They have mentioned clinical trials, but I do not want him to be taken completely off of everything while waiting. I am not a doctor, but common sense tells me that the Keytruda could at least keep it at bay while waiting and he had no side effects and it does boost the immune system. Would Opdivo+ Yervoy be an option? A clinical trial may take a while and I do not want to give it a chance to grow even more while we wait. It is so hard to see him with this terrible disease and I know others are dealing with it too.

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I posted but no one responded: My husband has had platinum chemo; Keytruda with Taxol; Currently Radioisotopes: His oncologists took him off of Keytruda, said it was not stopping the progression. I feel that common sense should prevail. He tolerated it well, he was suppose to be on a 2 year plan. He was taken off of everything for 6 weeks & during that time he had a new lesion, has to have pinpoint radiation for 2 lesions and has multiple lesions on his liver. I am very concerned about the liver, but his radiologist said that the 8mm lesion is 1/3 inch and the other lesions in his bones are more concerning. I feel he should go back on Keytruda and have something done about his liver before it gets worse. Have an appointment with an oncologist on 5/9. Applied for 1 clinical trial, but did not get in. I do not want him taken off of his current treatments until something else is put in place. I do not believe that the Keytruda was not working at all as it was progressing but there were no new lesions and immunotherapy assists the immune system which he needs right now. Radiologist said he can do radioisotopes and radiation at the same time as he said it was not stopping the progression either, but it can be used for pain and I told him it was helping his pain.

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My husband was diagnosed with non small cell lung cancer over a year ago. He had platinum therapy; it spread to his bones; Keytruda & Taxol to give the Keytruda a boost. Per his oncologist here and at Duke, the Keytruda was not working so they took him off of everything & for 6 weeks had no treatments while they decided what to do next. I disagree with taking him off of the Keytruda. He had no new lesions with it and one small spot on his liver 4 months ago. He has had 3 radioisotope therapies; had scans on 4/15 and now has multiple lesions on his liver, a new lesion & has 1 lesion in his spine and one in his pelvic bone that needs pin point radiation. The radiologist said that the liver is not as big as a concern as the other 2 lesions as 8mm is 1/3 inch. He said he can continue the radioisotopes with radiation as it has helped some with his pain. I disagreed with taking him off of everything before his current treatments. We were told by his doctor at Duke that the Keytruda was working and that it was hardening the bones and slowing the growth of the tumors. He had not been on it for a year when they took him off of it. Could he go back on the Keytruda while another treatment option is checked on? They have mentioned clinical trials, but I do not want him to be taken completely off of everything while waiting. I am not a doctor, but common sense tells me that the Keytruda could at least keep it at bay while waiting and he had no side effects and it does boost the immune system. Would Opdivo+ Yervoy be an option? A clinical trial may take a while and I do not want to give it a chance to grow even more while we wait. It is so hard to see him with this terrible disease and I know others are dealing with it too.

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@jannad

Thank you, I’m afraid to get too much hope on the bio markers as I don’t want to set myself up for disappointment if it doesn’t break that way. So for now I am trying to go one day at a time and enjoy my family and friends. Thank you for your encouragement.

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Certainly do whatever brings you happiness and peace during this time. One day at a time, is a great place to start! I’ll be thinking of you. Take care, Lisa

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Talked with God about my stage 4 tumor in right lung cancer which had spread nodules to kidney and cells to stomach and left long. And said no more pity parties my myself and live the rest of my life best I can. You’ll have good days (use them) and bad days. But whatever you do be pleasant as possible. Thank the Lord for the good life so far. Prayers to you and caregivers.🙏🏻🙏🏻🙏🏻

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@lls8000

@jannad So sorry that you are having to go through this, it’s nothing that any of us ever wanted, but many are able to live happy fairly normal lives with lung cancer. Please keep me/us posted on the biomarker testing results! This can be a HUGE game changer in your treatment. A little of my story, diagnosed March 2020 at the age of 49, I’m a never smoker, and also an adenocarcinoma. Both are factors for a gene mutation. Through biomarker testing, I found that my cancer has the ALK positive mutation. I take a targeted therapy/pills, and that has reduced all of the tumors and my lymph nodes have returned to normal. I’m able hike and bike, but do deal with some side effects from the meds. The best part…I’m alive!
We learn to look at life differently, don’t sweat the small stuff. The first year is so hard.
Hoping the the pleura settles down for you soon and that you are able to get through this difficult period. Please keep us posted.

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Thank you, I’m afraid to get too much hope on the bio markers as I don’t want to set myself up for disappointment if it doesn’t break that way. So for now I am trying to go one day at a time and enjoy my family and friends. Thank you for your encouragement.

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@jannad

My iPad and cell phone are a big help and my husband has been wonderful, married to him 59 years yesterday. We had a nice visit to a San Diego park where we watched sail boats and took a nice walk logging 1 1/2 miles on my Fitbit. I’ve read it’s even more important to keep my lungs strong now. My tumor is .43 of an inch at diagnosis so that’s my least problem. Since this has spread to the pleura, I’ve needed to be drained of fluid 4 times. My Onc feels that will dry up with my chemo. I am grateful for the strides medicine have made for nsclc in recent years as they will buy me a little more time hopefully.

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@jannad So sorry that you are having to go through this, it’s nothing that any of us ever wanted, but many are able to live happy fairly normal lives with lung cancer. Please keep me/us posted on the biomarker testing results! This can be a HUGE game changer in your treatment. A little of my story, diagnosed March 2020 at the age of 49, I’m a never smoker, and also an adenocarcinoma. Both are factors for a gene mutation. Through biomarker testing, I found that my cancer has the ALK positive mutation. I take a targeted therapy/pills, and that has reduced all of the tumors and my lymph nodes have returned to normal. I’m able hike and bike, but do deal with some side effects from the meds. The best part…I’m alive!
We learn to look at life differently, don’t sweat the small stuff. The first year is so hard.
Hoping the the pleura settles down for you soon and that you are able to get through this difficult period. Please keep us posted.

REPLY
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