New member - late stage - starting Keytruda

caregiver wife,

Welcome to the H&N forum, I am sorry that you are here.

Your story hits at the heart of the pain cancer can bring to a family. I can appreciate the positive steps your husband has made with treatments and hope that Keytruda will provide good results.

Sharing your story does provide information which will benefit other H&N members.

Best of luck moving forward.

Matt

Welcome to the board, and I'm so sorry about the circumstances that bring you here!

I had HPV+ SCC in my left tonsil and soft palate in 2012, and then lung cancer toward the end of last year. They weren't sure whether it was a new primary or a metastasis of the head and neck cancer, even though it was the exact same type (including HPV+), so I went through first line treatment again (chemo-radiation). On the second PET after the treatments, the cancer was growing in my lungs again so it's now considered a metastasis of the head and neck cancer.

I started a clinical trial of Keytruda's sister drug, Opdivo, and epacadostat several months ago. After only three treatments, all the lesions and nodules in both lungs were gone--all that remains are two active lymph nodes. My understanding of immunotherapy is that combination trials increase the odds of response, and in some cases the quality of the response. It is worth doing a little research or asking your doctor if your husband can go into a combination trial with Keytruda (or Opdivo) instead of just taking the drug alone. A combination trial with epacadostat might be just what you need. Here is a list of active trials including their locations: Epacadostat Trials. 

Is his cancer HPV positive? If so, this trial is also promising and, even better, they can enter you in it, take blood for it, and then hold it for years so it is waiting for when/if other treatments fail. It's in Houston, but giving the blood doesn't require travel there--they send a kit to you. If you end up getting infusions on that trial, you would travel to Houston for a one week period, and then return for a few days once every month (I think). 

Let me know if there's any way I can help!

caregiver wife said:

Thanks to all for your kind

Thanks to all for your kind responses!

Searching the link, I did not find a trial that was applicable to my husband at this time.  Husband's physical condition at time of original diagnosis precluded aggressive combination chemo.  His Erbitux these past several months had to be at a reduced dose.  I don't believe he would tolerate combination treatment at this time.

Leaking feeding tube replaced today.  Portacath to be inserted early tomorrow morning.  Hopefully, authorization soon.

 

 

The combination therapy that Laralyn mentioned before is very different than classic chemo. These are very targeted, and with few exceptions (serious side effects) are much better tolerated. So don’t exclude the possibility of getting into this kind of trial based solely on the physical condition. If there are exclusionary criteria in the study protocol that preclude the enrolment, it’s a different story, but don’t reject this option from the get-go.

Hi, all...

new to the forum. 

Just started Ketruda, discovered there is not much info out regarding Keytruda and Head and neck 

Squamis cell. So, I have plenty of questions, here is the first. Is there any known issues with Keytruda and THC oil?