Thyroid Cancer And Keytruda (Page 2) (Top voted first)

I have stage 4 thyroid cancer which has metastasized to my lungs. Although it is slow growing, the cancer will kill me. I found a clinical trial at UCSF that would take a variety of different cancer types. After 9 infusions, the keytruda is beginning to work. Other than fatigue I don't feel sick. I am hoping for stable disease or a cure.

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Dr. Aggarwal is my doctor. Wesley Goodman-Levy is the coordinator of the trial.

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Hi Cheryl,

Just wondering how are you doing with Keytruda now? It has been more than a year right? May I know which type of thyroid cancer you had? Are you PD-L1 positive? My brother is having thyroid /undifferentiated cancer stage IV and in critical stage now. Doctor advise to give him Keytruda immediately. Pls advise. Thanks!

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My tumors are not visible anymore. I do have pneumonitis as a side effect for which I use a Q-var (prednisone) inhaler when needed. The clinical trial ends in August. Everyone in the trial is doing well according to the nurses.

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Great to hear that!!

Hope this will bring more courage to my brother.

Thanks for your reply!

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Hi Cheryl,
Thank you for your posts. So great that Keytruda worked for you. My wife Mary also has thyroid cancer with spread to lungs. But after four infusions of Keytruda, her lung nodules grew. Also treated at UCSF. What type of gene alterations does your cancer have? And what type of thyroid cancer. Thank you,
Mel

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Thank you very much for sharing the specifics of your condition and treatment. My wife Mary is using it to find the next best treatment. Mary has Castle carcinoma, a rare subtype of thyroid cancer. Her tumor has Hras and CDKN2a mutations but not BRAF. Her UCSF oncologist tried Keytruda after testing showed PD1 positive (15%). After four infusions, however, a scan on 9/16 showed significant growth of lung nodules. One is now 35 mm, 'hot', and growing. Going to UCSF on Divisadero today to select next treatment.

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You said: "I hope I haven't annoyed you with these ideas." I say that your ideas are deeply appreciated. Mary might benefit from them as well as others who face end of life. Keep sharing! Also, don't sell yourself short as just a retired schoolteacher as you persisted while the experts gave up. We patient/caregivers need to do both: get treatment from top doctors & hospitals, but, as you have done, look ourselves for help. I will start to go over your suggestions. They include ideas not found on clinicaltrials.gov. I plan to discuss them with Mary's doc who we see at 12:30 today. PS - Mary is a retired RN with a career ironically at UCSF.

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Did the doctors come up with a new plan for your wife?

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