Thyroid Cancer And Keytruda (Page 2)

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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My tumors are not gone, but I have stable disease. Nothing has grown in a year. I have just had my three-month, post infusion scan and waiting to hear from Doctor. Pneumonitis is still a problem and fatigue comes and goes.

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I have poorly differentiated papillary thyroid cancer with the B-RAF V600e mutation.

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The infusion part of the trial was over for me at the end of July. Now I get scans every three months. My tumors are not larger than 9mms and have not grown. The doctor calls it "stable disease". I am PD-1 positive but I can't find out the number. I should have a durable response of 6-38 months according to the presentation by the UCSF team at the last ASCO conference. You can read the abstract online.

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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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I spend two hours a day reading clinical trials looking for a plan B or C. I am not a doctor, just a retired schoolteacher; however, my doctors at Cedars Sinai wrote me off. I found the Keytruda trial by reading. I can make some suggestions if you will not be offended. If you can get into a CAR-T trial run by Kite, Juno, bluebird bio, or Celgene, she might be helped within two weeks. Mark Gilbert is the medical officer at Juno. I wrote him four years ago. Then he said they were five years away from completing work on solid tumors. They have an 80% cure rate on blood cancers. Time magazine did a front page on rapamycin, which looks quite interesting, and UCSF is running trials on rapamycin. In Israel, an engineer has started a company called New Phase using heated nanoparticles that "turn cancer into a chronic disease". They are in Phase 1. Regen in San Diego is experimenting with chord blood. Cobimetinib is a MEK inhibitor that lets Keytruda work more effectively. Large doses of extra strength turmeric (900mg pills) from the Vitamin Shoppe help me breathe better--works in 10 minutes.
I hope I haven't annoyed you with these ideas.

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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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Thanks for asking. Yes, some ideas, 2-3 possible trials. As you know, advanced solid tumors are difficult to treat. We have put out feelers for a couple of the studies. When Mary gets enrolled, I can report specifics. Until then superstitious me does not want to jinx anything. The rationale for the studies make sense, so we are hopeful, and a bit anxious. Best wishes to you.

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