1. < Head & Neck Cancer

Keytruda for Head & Neck cancers

Posted by Maureen, Alumna Mentor @alpaca, Jan 10, 2018

Hello people. We are half way through our first normal week after Christmas/New Year. New Zealand is still partly shut down though. Schools don't start till end of this month - some not till Feb.
I'm just easing my way back into my volunteer "work". Wrote my first blog post of the year about Keytruda after emailing the Merck representative in Auckland. Keytruda is not registered for head and neck cancer in New Zealand yet. That means it is not funded in our free hospital system and people who want it have to pay a private clinic. Merck expect it to be registered this year and when it is they will apply to our funding body, Pharmac, for it to be supplied in public hospitals.
I've been reading about biomarkers that might suggest a person will respond well to Keytruda or not.
Has anyone here used this drug?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 10, 2018

Tagging @gaybinator and @sylviapf who have talked about Keytruda for head and neck cancer.

REPLY
1 reply
Maureen, Alumna Mentor | @alpaca | Jan 10, 2018
In reply to @colleenyoung "Tagging @gaybinator and @sylviapf who have talked about Keytruda for head and neck cancer." + (show)
@colleenyoung

Tagging @gaybinator and @sylviapf who have talked about Keytruda for head and neck cancer.

Jump to this post

Thanks, Colleen. Happy New Year. I forgot about tagging:)

REPLY
Adrienne, Alumna Mentor | @adriennef | Jan 18, 2018

Hi Maureen! I participated in a clinical trial at Mayo that involved a PD-L1 inhibitor (Keytruda is a PD-1 inhibitor). My tumor was tested and found to be PD-L1 positive, so we were all pretty hopeful going in. Initially it seemed the cancer stabilized, but then the tumor started growing (this was over the course of 3 months). The immunotherapy was generally pretty tolerable, but it gave me crazy fevers. Like 105.7! Eek. My body would shake and shiver as the fever set in. I felt hopeful because it was obvious that my body was fighting something, but in the end the cancer ended up growing. My doctors still say they are unsure of the long-term positive effects that I may still be experiencing from the immunotherapy. Because it is so new, it is hard to really know how my body has reacted. Anyway, that is just my experience! I am SO hopeful and SO excited about this new way of attacking cancer cells. What a breakthrough we seem to be making! I have heard so many wonderful stories of people benefiting from these drugs.

REPLY
2 replies
Maureen, Alumna Mentor | @alpaca | Jan 18, 2018
In reply to @adriennef "Hi Maureen! I participated in a clinical trial at Mayo that involved a PD-L1 inhibitor (Keytruda..." + (show)
@adriennef

Hi Maureen! I participated in a clinical trial at Mayo that involved a PD-L1 inhibitor (Keytruda is a PD-1 inhibitor). My tumor was tested and found to be PD-L1 positive, so we were all pretty hopeful going in. Initially it seemed the cancer stabilized, but then the tumor started growing (this was over the course of 3 months). The immunotherapy was generally pretty tolerable, but it gave me crazy fevers. Like 105.7! Eek. My body would shake and shiver as the fever set in. I felt hopeful because it was obvious that my body was fighting something, but in the end the cancer ended up growing. My doctors still say they are unsure of the long-term positive effects that I may still be experiencing from the immunotherapy. Because it is so new, it is hard to really know how my body has reacted. Anyway, that is just my experience! I am SO hopeful and SO excited about this new way of attacking cancer cells. What a breakthrough we seem to be making! I have heard so many wonderful stories of people benefiting from these drugs.

Jump to this post

thank you for this Adrienne. Very interesting. I wondered about specific side effects. There are many hopeful signs in the whole immunotherapy concept but they are not quite the wonder drugs we've been waiting for - yet.

REPLY
sylviapf | @sylviapf | Jan 18, 2018
In reply to @adriennef "Hi Maureen! I participated in a clinical trial at Mayo that involved a PD-L1 inhibitor (Keytruda..." + (show)
@adriennef

Hi Maureen! I participated in a clinical trial at Mayo that involved a PD-L1 inhibitor (Keytruda is a PD-1 inhibitor). My tumor was tested and found to be PD-L1 positive, so we were all pretty hopeful going in. Initially it seemed the cancer stabilized, but then the tumor started growing (this was over the course of 3 months). The immunotherapy was generally pretty tolerable, but it gave me crazy fevers. Like 105.7! Eek. My body would shake and shiver as the fever set in. I felt hopeful because it was obvious that my body was fighting something, but in the end the cancer ended up growing. My doctors still say they are unsure of the long-term positive effects that I may still be experiencing from the immunotherapy. Because it is so new, it is hard to really know how my body has reacted. Anyway, that is just my experience! I am SO hopeful and SO excited about this new way of attacking cancer cells. What a breakthrough we seem to be making! I have heard so many wonderful stories of people benefiting from these drugs.

Jump to this post

My husband, Ken, was on Keytruda for one year. Scan results were very good until the last two months. Two tumors began to grow rather than shrink. However, the 50+ smaller ones under his arm are now gone. We are thrilled to be dealing with only two tumors now. At this point, radiology is an option. We consult with a radiologist tomorrow. The Keytruda side effects were minimal. He had two squamous cells cancers on his leg that needed MOHS surgery. He also had some rashes that were managed with various creams and ointments.

REPLY
Maureen, Alumna Mentor | @alpaca | Jan 18, 2018

That sounds like a good result, @sylviapf. So it's not a cure-all for most but it shrinks tumours for at least a while and may eradicate the smaller ones. Glad the side effect were minimal.

REPLY
Gaybinator | @gaybinator | Feb 18, 2018

My husband has squamous cell carcinoma of the metastatic spindle variety. He had been on centuximab (Erbitux) starting in September 2016. It worked well for the cutaneous tumors, but in May 2017 PET scan showed three tumors on the liver, diaphragm and the spine at the base of the neck. Immediately began Keytruda and the October 2017, plus the results of the January 2018 PET scan were clear of any visible cancer.

He continues to suffer great fatigue, which I believe to be the result of radiation Feb-Apr 2017. However, he is able to work part time. There are no side effects which we can pin exactly on the Keytruda.

REPLY
1 reply
Adrienne, Alumna Mentor | @adriennef | Feb 21, 2018

This article popped up this morning. As someone who has been told there aren’t any other options left, it is thrilling to read about what China is doing!!! The PD-1 gene that is targeted is similar (in my limited understanding) to how immunotherapy is used to attack cancer.

via npr: Doctors In China Lead Race To Treat Cancer By Editing Genes http://n.pr/2HcWHjG

REPLY
3 replies
Maureen, Alumna Mentor | @alpaca | Feb 21, 2018
In reply to @adriennef "This article popped up this morning. As someone who has been told there aren’t any other..." + (show)
@adriennef

This article popped up this morning. As someone who has been told there aren’t any other options left, it is thrilling to read about what China is doing!!! The PD-1 gene that is targeted is similar (in my limited understanding) to how immunotherapy is used to attack cancer.

via npr: Doctors In China Lead Race To Treat Cancer By Editing Genes http://n.pr/2HcWHjG

Jump to this post

It is thrilling to hear about new science and technologies. I'm going to read this later. Big "to read" list. How are you doing, Adrienne?

REPLY
Adrienne, Alumna Mentor | @adriennef | Feb 22, 2018
In reply to @adriennef "This article popped up this morning. As someone who has been told there aren’t any other..." + (show)
@adriennef

This article popped up this morning. As someone who has been told there aren’t any other options left, it is thrilling to read about what China is doing!!! The PD-1 gene that is targeted is similar (in my limited understanding) to how immunotherapy is used to attack cancer.

via npr: Doctors In China Lead Race To Treat Cancer By Editing Genes http://n.pr/2HcWHjG

Jump to this post

I’m doing well, other than getting the nasty cold my son brought home from school! 🙁 I’m heading to Mayo next month to check in with my doctors. Hoping for good news! I’m also hoping to get my port out. I’ve had it for 3 years and figure it’s time. I’m afraid that I’m jinxing myself by getting it removed though!

REPLY
View MoreView Less
Please sign in or register to post a reply.