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.

@colleenyoung

Hi everyone,
I would like to share a message that I received from a family member of @shortshot80 (Nancy).
"She recently stopped radiation treatments. The five hour round trip is just too much for her to get to and from radiation. She is in hospice. This group has been so good for her and she appreciates so much all the support. Could you please let everyone know in her group what she has decided? Thank you!!" D.

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Thank you for sharing that sweet note, @colleenyoung. I've been thinking about her a lot lately and I hope she has pain relief and a gentle homegoing. She is a dear, dear person and I'm grateful to Connect for the opportunity to meet her.

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@colleenyoung

Hi everyone,
I would like to share a message that I received from a family member of @shortshot80 (Nancy).
"She recently stopped radiation treatments. The five hour round trip is just too much for her to get to and from radiation. She is in hospice. This group has been so good for her and she appreciates so much all the support. Could you please let everyone know in her group what she has decided? Thank you!!" D.

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How thoughtful to let us know how Nancy is doing. She shared so much of her life and I am glad that Hospice will help her over the last wave.

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@colleenyoung

Hi everyone,
I would like to share a message that I received from a family member of @shortshot80 (Nancy).
"She recently stopped radiation treatments. The five hour round trip is just too much for her to get to and from radiation. She is in hospice. This group has been so good for her and she appreciates so much all the support. Could you please let everyone know in her group what she has decided? Thank you!!" D.

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I just saw this, glad Nancy is getting the care she deserves. Please share with her family what her sharing meant to me and the group. Never met personally, but appreciate the joy of life and courage to share Nancy has demonstrated. Wish for a safe, gentle passage....

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@colleenyoung

Hi everyone,
I would like to share a message that I received from a family member of @shortshot80 (Nancy).
"She recently stopped radiation treatments. The five hour round trip is just too much for her to get to and from radiation. She is in hospice. This group has been so good for her and she appreciates so much all the support. Could you please let everyone know in her group what she has decided? Thank you!!" D.

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@colleenyoung- Has there been any other word about Nancy?

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@merpreb

@colleenyoung- Has there been any other word about Nancy?

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I'm afraid not, @merpreb. All we can do is send our virtual messages to her and her family.

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@liz8716

@coleen young. I see her again next week. I'm definitely going to ask about molecular testing. All I know now is that it is a squamous noon small cell lung cancer. Also that I have a very high pdl1 level. Things just seem hopeless at times because every where I read that long term survival rates are not good

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@liz8716 I just wanted to check in and see if your oncologist was open to the foundation one testing? At your young age, and high PDL1, you should be tested for gene mutations right away. Are you in the US? There may be a targeted therapy that can help. There is real scientific based HOPE in the targeted therapy realm.

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Hi, I got almost the same answer from my oncologist that you did. I am on Keytruda for very advanced uterine cancer, and there is not much data on my cancer and Keytruda. I did chemo/radiation first, but on my 2nd scan my cancer had come back. Chemo and radiation were no longer an option, so they recommended Keytruda as a good match for my tumor, and it did help some. I was told 2 years was the longest they could keep me on Keytruda, and I am on my 11th round. I get it every three weeks. I knew going in this was not a cure, just a life prolonging measure. I am now facing having to stop Keytruda, because I feel sick all the time. All those side effects (the 'minor' ones) I experienced. It's at the point I just can't feel like this anymore, especially since I have to keep working. It's scary to think the only treatment left is the one you may have to quit. I have weighed the pros and cons for myself, and am pretty sure my next treatment will be my last. Each day for me is a new beginning, and only you can pick the road that is right for you. Many blessings, and take care of yourself.

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I was told same thing but my Dr said there is new stuff coming out all the time and by next year my 2 years will be up but something new might be there. It will have given me two years which I wouldn’t have had. Thankful to God for this time. Enjoy whatever I’ve got left.

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@karion182004

Hi, I got almost the same answer from my oncologist that you did. I am on Keytruda for very advanced uterine cancer, and there is not much data on my cancer and Keytruda. I did chemo/radiation first, but on my 2nd scan my cancer had come back. Chemo and radiation were no longer an option, so they recommended Keytruda as a good match for my tumor, and it did help some. I was told 2 years was the longest they could keep me on Keytruda, and I am on my 11th round. I get it every three weeks. I knew going in this was not a cure, just a life prolonging measure. I am now facing having to stop Keytruda, because I feel sick all the time. All those side effects (the 'minor' ones) I experienced. It's at the point I just can't feel like this anymore, especially since I have to keep working. It's scary to think the only treatment left is the one you may have to quit. I have weighed the pros and cons for myself, and am pretty sure my next treatment will be my last. Each day for me is a new beginning, and only you can pick the road that is right for you. Many blessings, and take care of yourself.

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@karion182004- Welcome to Mayo Clinic Connect. I'm sorry that you have come to Connect with this extremely difficult decision. You must feel devastated. Are there no medicines that can relieve your symptoms? Has the doctor told you what you can expect after you have to stop Keytruda?

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Has anyone experienced severe skin rash with Keytruda

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