Stage 4 bowel cancer

You can find information about advanced bowel cancer on our website, including our Treating advanced bowel cancer booklet. You can also join our Living with stage 4 bowel cancer Facebook group.

KathC

Due to start immunotherapy (Pembrolizumab) - anyone else

Hi I’ve just been told my latest colorectal cancer recurrence (another primary) is dMMR and I’m due to star immunotherapy Pembrolizumab. I’d love to hear from anyone else about their experiences on it. Thank you.

kathyS

@KathC no experience of this Kath- Sorry to hear this but good news that you are going to start treatment soon and hopefully someone will be along to share their experiences. My liver and lung mets were treated by ablation and so far so good - sending good vibes 🙏 to you that the immunotherapy is effective for you. :x::x::x:

KathC

Oh that’s good news! I had my liver and lung mets removed by surgery - they appeared one after the other a couple of years apart. Thanks for replying to me, this is my first time on this forum 🥰. Sending you positive vibes for continued lack of mets :x::x::x:

Liz Blakelands

@KathC
Hi and welcome to the forum which I hope you find friendly and helpful. I'm really sorry about your recurrence. I can see from your profile that you are a bowel cancer 'veteran' . A lot of the forum members are and have a wealthy of experience to share.

I don't have experience of immunotherapy but I'm sure someone will be along who has. Just wanted to welcome you to the forum.

Good luck with your treatment,
All the best
Liz :x::x:

louise28

Hi @KathC sorry about this recurrence. It seems that this type of immunotherapy for MSI high patients can bee really successful. The person I might ask is the lovely @Jane39 as she was on immunotherapy for a while, i believe, and has had great success with it. :x::x::x:

KathC

Thanks For your warm welcome, Liz. I’ve had cancer since 2013 but never actually used the forum before to ask a question. I hope you are well :x::x::x:
quote]Quote from @Liz Blakelands:
@KathC
Hi and welcome to the forum which I hope you find friendly and helpful. I'm really sorry about your recurrence. I can see from your profile that you are a bowel cancer 'veteran' . A lot of the forum members are and have a wealthy of experience to share.

I don't have experience of immunotherapy but I'm sure someone will be along who has. Just wanted to welcome you to the forum.

Good luck with your treatment,
All the best
Liz[/quote]

Quote from @Liz Blakelands:
@KathC
Hi and welcome to the forum which I hope you find friendly and helpful. I'm really sorry about your recurrence. I can see from your profile that you are a bowel cancer 'veteran' . A lot of the forum members are and have a wealthy of experience to share.

I don't have experience of immunotherapy but I'm sure someone will be along who has. Just wanted to welcome you to the forum.

Good luck with your treatment,
All the best
Liz

Jane39

Hi @KathC
Welcome to the forum.
I hope that you find it a friendly and supportive community.
I am sorry that you have had recurrence of cancer.

I have Lynch Syndrome / MSI-H and had Nivolumab for two years. Prior to that I had three years of chemo and targeted drugs that kept me stable and then had progression.
Have a read of my profile ( click on my name ).

I see you have dMMR. Do you have Lynch?

Both pembrolizumab and nivolumab are in the class of medicines known as programmed death receptor-1 (PD-1) blocking antibodies (also called immune checkpoint inhibitors). The side effects are very different to chemo and targeted drugs. Much easier to tolerate on a day to day basis. Now funded on the NHS as first line for metastatic bowel cancer for dMMR/ MSH-H, which is fantastic ( it wasn’t funded when I needed it).

After two year of treatment it was confirmed that I had a complete metabolic response. Truly amazing and I am very lucky - I had extensive widespread disease and lots of bone mets in my spine, skull and pelvis. I have now been off all treatment for nine months and my scans report no new disease.

We have set up a Facebook support group for people on checkpoint inhibitor drugs that is affiliated with the charity. Come and join us. Many people who have had really great outcomes.

www.facebook.com/groups/2652138928151116

The infusion is approx an hour and most people feel fatigued, headache and achy for a few days.

Best wishes and good luck for start of treatment.

Jane :x:

Thanks for the tag @louise28 :x::x:

KathC

Hi Jane, thanks so much for commenting. That sounds amazing for you!! I’m so pleased. I didn’t have Lynch syndrome when they tested me for it in 2014.
Thanks for the information on side effects of the drug, that’s really useful. I will follow your link to the group. Thanks again. Katharine :x::x::x: