Thyroid Cancer And Keytruda

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Cheryl Says:


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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1
Verwon Says:

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
Cheryl Says:

Just fatigue.

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3
Verwon Says:

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
Cheryl Says:

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
Verwon Says:

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

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6
Joe Says:

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
Cheryl Says:

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
Joe Says:

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
Cheryl Says:

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
Joe Says:

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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11
Cheryl Says:

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
Joe Says:

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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Cheryl Says:

NCT02054806--MK 3475 (pembrolizumab)

I have the B-RAF V600E mutation.

Dr. Rahul Aggawal is my doctor.

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14
Joe Says:

Thank you Cheryl. I will look into it.

What type of thyroid cancer do you have?

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15
Joe Says:

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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16
Cheryl Says:

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

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17
ks Says:

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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18
Cheryl Says:

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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19
ks Says:
via mobile

Great to hear that!!

Hope this will bring more courage to my brother.

Thanks for your reply!

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20
Mel Says:

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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