Pembrolizumab (Keytruda)

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NSCLC (ROS1) mastastised to peritoneal cavity.

Started Pemetrexed and Cisplatin reduced to 75%. Hospitalised 4 days later due to severe nausea. Commenced 2nd cycle with additional anti nausea and longer duration. Still very ill . Oncologist stopped all chemo due to severe weight loss through nausea. Would add 5 years ago had Cisplatin and vinorelbine chemo after surgery (which was a doddle by comparison). First cycle hospitalised with neutropenic sepsis. Further 3 cycles reduced to 75% but was still very sick.

Question, If my Performance scores go up to 1, they will consider Pembrolizumab (Keytruda). Have read info they gave me but it sounds as bad as the chemo and don’t know how long it would prolong life and at what quality. Have been told I have 6 months without treatment. I have 3 weeks to decide after that too late to commence.

Need advice from people who are not involved as family and friends struggling.

Thanks in advance.

latchbrook 11 months ago

Hi JGBeds and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read how ill you've been after starting pemetrexed and cisplatin.

As the online community is divided up into different support groups I'm going to recommend that you join the lung cancer group as that will give you the chance to connect directly with others who have had this type of cancer and treatment.

To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

When you feel up to it, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Mmum 11 months ago

Pembro is used for a few cancers so you could use the search facility at the top of the page for "pembro" or "pembrolizumab" and read what people have already posted about it. On a huge generalisation, immunotherapy drugs eg pembro are better tolerated than chemo but of course everyone is different. Also the drug leaflets have to list all the possible side effects and it sounds horrendous. But no one gets all the side effects.

Teaspoon 11 months ago

HI if it helps I've been on this since February every 6 weeks sometimes feel exhausted odd little other things but not like chemo at all level 4 renal cancer kidney removed now no signs up to now of anywhere else considering 9cm tumour so really pleased keeping me on it for while longer but in last couple months been to portugal twice been to Ireland don't think I'd be doing that if it wasn't manageable you have to stay positive I don't regret it at all

JGBeds 11 months ago in reply to latchbrook

Thank u for your helpful prompt response. Oncologist said it will be the peritoneal cancer that’s being treated, so do I still go to Lung cancer. I really only want honest answer as to how bad Keytruda is and what quality it’s buying me. I am under no illusions peritoneal has poor survival rate. Many thanks

latchbrook 11 months ago in reply to JGBeds

Hi JGBeds

There is a group for peritoneal cancer so you could join that and post your question to see how people who've had Keytruda are finding it. Clicking on the link I've created will take you straight there.

"Never regret a day in your life, good days give you happiness, bad days give you experience"