Immunotherapy as primary treatment

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

As I'm not a member of this forum I don't know the answer to your question, but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I'm sure some of the forum members will be along soon to share their experiences with you.

Thank you latchbrook.

It looks like information on this subject is hard come by.

Hopefully someone has some recent experience of this treatment they can share with us.

Hi Luggsey 

I was hoping someone with more appropriate info would pop on but I think it’s because it’s quite new to bowel cancer and only got the funding through for it over covid . I have witnessed it being used in new ways with patients which is exciting .

A couple of points from reading your post .  One thing I have found out with my own mum  who has actually been a stage 4 patient for nearly 15 years and is now 81 . Sometimes my mum’s team did not step in right away to treat until they got a feel for the speed of growth . How big is the tumour and is she at risk or blocking ? If so what approaches would they use to keep the bowel open . Would they stent or go to surgery at that point ? The answers to some of this might help you and her get a finger on the urgency  . It can take time to get all the information together to make an informed choice . 

My friend had immunotherapy but along with chemo . All  treatment can have side effects and it’s hard to know what they are going to be like . My own mum had ten months of treatment from 80 through to 81 . It was doable but I have also struggled with mixed feelings about it . One thing for sure it can be stopped at any point if she found it harsh .

My mum is off treatment now and doing fine . Good days and not so good but I get her out and about . We have moved to focusing on quality time now . No idea the length of time we have but committed to doing our best with it .

My mum wanted treatment in her 80 s and whilst she could she did . She has had a lot of treatment in the past so knew what it was all about . The nhs as I understand it don’t discriminate against age but more about the fragility and ability to endure treatment and any other underlying health conditions .

It can also be hard to get information on using agents alone . My mum used a biological agent  it it’s mainly given with chemo so was a learning curve for us as most people had chemo side effects in the mix .

Other forums like the lung and melanoma group might have more posts on using immunotherapy as they are much further ahead with it . I used them to find out info for my friend . It did a great job for her but sadly her primary was notoriously bad for brain mets . 

Take care ,

Court 

Hi Court, thank you for taking the time to provide this information. 

As you say use of immunotherapy is not so common with bowel cancers it would seem?

I wonder if you know if any side effects your Mum had were significant and attributed to the immunotherapy?

Did your Mum benefit from Immunotherapy do you think?

My Mum has an early diagnosis and the surgeon did say it's in an area that doesn't normally block in the ceacum? They state she would likely survive two years, maybe more. Its just a guess though isn't it.

I obviously don't want my Mum to have treatment if she doesn't need it but it seems to be a guessing game! If she can have immunotherapy without the potential side effects ruining her life that's what I need to find out for her.

Worryingly I have read the MSI cancers can be aggressive?

So many unknowns...

Hi Luggsey,

I don't have any experience myself but think someone on the bowel cancer uk site is having immunotherapy. Might be worth having a look.

Cheryl x

I've just had a look. If you put immunotherapy in the search box there are quite a few posts that come up.

Cheryl x

Hi ,

My mum had a different cell type so went onto Cetuximab which is more a targeted treatment. It works differently to immunotherapy. 
Keytundra has been used in the past for bowel cancer . Let me see if anyone else is around who uses it .

Court 

I will link in Moi2  She was one of the first people I knew of to use immunotherapy for bowel cancer . 
You can also click on her name and read her bio .

Hope that helps .

Court 

Thank you Court.

Mum has MSI cancer type if that is relevant?

Yes , that’s more compatible with immunotherapy. If you click on Moi2 

name you can read her story . Our own immunotherapy warrior .

Hope you are doing ok Moi2 .

We also have an “ ask an expert “ they could advise about the side effects . Our helpline 0808 808 0000 has nurses you can also ask anything that concerns you . They are very helpful.

 Ask a Nurse
This is the link to the nurse .

It is good your mums tumour is small and not likely to block but I do understand your concern about her cell type .

Is your mum having another scan to give you a feel for the rate of growth?

Take care ,

Court