Thyroid Cancer And Keytruda
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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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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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Did the doctors come up with a new plan for your wife?

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

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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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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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Great to hear that!!

Hope this will bring more courage to my brother.

Thanks for your reply!

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

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Hi Cheryl. Is it Dr Aggawal or Dr Aggarwal? I called a Dr Aggarwal at UCSF and they told me he only treats urological cancers. ???

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Thank you Cheryl. I will look into it.

What type of thyroid cancer do you have?

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NCT02054806--MK 3475 (pembrolizumab)

I have the B-RAF V600E mutation.

Dr. Rahul Aggawal is my doctor.

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Thank you Cheryl. What type of thyroid cancer do you have?

Do you have any gene mutations? If so which ones?

What is the Doctors name at UCSF that you see? Do you know that name of the trial so I can look it up on the clinicaltrials.gov website?

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The Keytruda starts working in 6 weeks. I've been on it for a year. At first I took an infusion every two weeks. Now I go up to San Francisco every three weeks. There has been a twenty-percent reduction in my tumors.

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I have taken, Nexavar, Panzopanib, and now Lenvatinib. The lenvatinib has worked for about 9 months now, but I am showing some tumors starting to grow. How often are the Keytruda treatments? How long did it take for the tumors to stop growing?

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I am in Southern California. I have had multiple surgeries and radiation. Right now Keytruda is keeping my cancer from progressing. What are you taking?

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