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Maureen, Volunteer Mentor
@alpaca

Posts: 203
Joined: Nov 17, 2016

Keytruda

Posted by @alpaca, Wed, Jan 10 9:14pm

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?

REPLY

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

@colleenyoung

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

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

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.

@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.

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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.

@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.

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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.

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.

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.

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

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@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

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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?

@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

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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!

@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

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I have the jinx idea fixed in my head too. Best of luck with the Mayo appointment. Sounds like a terrific place to get your treatment in but a bit far away for me. Funnily enough, Adrienne, now that at I am a somewhat elderly cancer "survivor" and have no children to bring bugs home from school, I almost never get a cold. Uh oh. Maybe I jinxed it:)

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