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.

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richcolleen | @richcolleen | Jan 6, 2021

Yes! Went to dermatologist. She Had me put Fluocinonide on scalp every night for a week. Each morning had to shampoo with ketoconazole, second day t/sal and third day selson blue. Second week only twice a week. It worked.

Merry, Alumni Mentor | @merpreb | Jan 6, 2021

In reply to @merpreb "@lindacarol - Welcome to Mayo Clinic Connect Linda. I am glad that you found us. May..." + (show)

@lindacarol- Hello. I am wondering if you ever found a solution to your itching from Keytruda?

Merry, Alumni Mentor | @merpreb | Nov 20, 2020

In reply to @lindacarol "Has anyone experienced severe skin rash with Keytruda" + (show)

@lindacarol - Welcome to Mayo Clinic Connect Linda. I am glad that you found us. May I ask how long you have been on Keytruda? Itching seems to be a common side effect of Keytruda. Have you been given anything for relief?

Here is some information about Keytruda and possible side effects

https://www.mayoclinic.org/drugs-supplements/pembrolizumab-intravenous-route/side-effects/drg-20122552

richcolleen | @richcolleen | Nov 19, 2020

I have not had skin rash but do know that is a side affect. I do have rash (Dr. calling a fungus) on hair. Taking three kinds of shampoo and one liquid leaving on scalp overnight and the itching and scraps are going away. My Dr always asked if I had rash. Good luck.

lindacarol | @lindacarol | Nov 19, 2020

Has anyone experienced severe skin rash with Keytruda

Merry, Alumni Mentor | @merpreb | Oct 2, 2020

In reply to @karion182004 "Hi, I got almost the same answer from my oncologist that you did. I am on..." + (show)

@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?

richcolleen | @richcolleen | Oct 2, 2020

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.

karion182004 | @karion182004 | Oct 1, 2020

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.

Lisa, Volunteer Mentor | @lls8000 | Sep 7, 2020

In reply to @liz8716 "@coleen young. I see her again next week. I'm definitely going to ask about molecular testing...." + (show)

@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.