Thyroid Cancer And Keytruda (Top voted first)

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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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25

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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11

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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12

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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21

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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22

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

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23

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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28

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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1

Hello, Cheryl! How are you doing? I'm sorry about your diagnosis, but very glad that this mediation is helping you. Life is so very precious and beautiful, so I wish you the best.

Are you still doing well? Any new side effects?

Typical side effects include itching, rash, feeling tired, joint pain and cough.

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2

Just fatigue.

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3

That is very normal for this medication and fortunate that you've not encountered any others.

How are you feeling?

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4

I just have to rest more. My next scan is in three weeks, and I will have more to report.

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5

I really hope all goes well for you! Please keep me updated!

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6

I have stage 4 radioiodine refractory thyroid cancer in my lung and pleura. Been taking Lenvatinib but am showing progression. I am interested in the Keytruda trial and the results you have been getting. I live in the Bay Area as well.

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7

The Keytruda is still working slowly. My tumors are shrinking. The trial runs for one year more. Then we have scans every three months to see if we need additional infusions. You should get into this trial or join one that added a booster like OX 40 or 411B.

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8

Cheryl, thank you for responding. It would be great to connect with you as a fellow thyroid cancer warrior and talk about our cancers and the treatments and research we've both undergone. I'm guessing you have papillary? I live in San Jose, I'm guessing you are in Nor cal a well. It would be great to chat. Joe {edited for privacy}

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9

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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10

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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13

NCT02054806--MK 3475 (pembrolizumab)

I have the B-RAF V600E mutation.

Dr. Rahul Aggawal is my doctor.

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14

Thank you Cheryl. I will look into it.

What type of thyroid cancer do you have?

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15

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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