Bowel cancer treatment and side effects

You can find lots of useful information about bowel cancer treatment on our website. You can also get information and support from our Ask the nurse service.

Hayleyc89

Husbands bowel cancer spread to para aortic lymph nodes told he is now palliative and will be given nivolumab to pro long he's life

Hi can anyone share their experiences about my post please I need to hear good and bad stories.

Frances Styles

@Hayleyc89, so sorry to read your post, I think we've chatted on the Macmillan forum a while back. I can't help with para aortic lymph but if you click on the search tool and type in para aortic lymph a whole lot of posts will come up, just had a check and there are lots, hope this helps . Love Frances :x::x:

louise28

Hi @Hayleyc1989 I'm so sorry to hear thjs..is it the only disease he has? I think it depends how widespread the involvement of nodes is but I've heard of a number of people being treated successfully with sbrt (A type of targeted radiation). It may be hard to guarantee that the cancer won't appear elsewhere but radio seems to be used for local control quite a bit.

Is he msi high? I don't know much about nivolumab but I've heard of people with lynch or those with braf msi having it for long periods. @Jane39 may be able to confirm :x:

Hayleyc89

Hi @Frances Styles we have spoke before :) hope you are well.
@louise28 he has lynch syndrome and bowel cancer and it has spread to the nodes. We have been told the nodes are too deep to do anything with except try the immunotherapy :x::x:

Jane39

@Hayleyc89
Sorry to hear about your husband.

I am also Lynch. In 2017 I progressed form stage 3 to stage 4 with widespread disease and a very poor prognosis. .

My spread included widespread and distant nodes (inc para- aortic), multiple liver tumours, bones (skull, spine, pelvis), adrenal tumour - have a read of my profile if you click on my name.

Chemotherapy and targeted therapy eventually failed after 2.5 years. I was extremely lucky to be accepted by the drug company to have Nivolumab as it was not available from the NHS at the time. The private cost was unsustainable.

I have had almost two years of Nivolumab with an excellent response and in remission at 9 months. Immunotherapy can be a game changer for Lynch and that is why it has recently been approved by the NHS, which is fantastic. Any Lynch person that progresses from stage 3 to stage 4 will now be given Immunotherapy instead of chemotherapy and targeted drugs.

www.bowelcanceruk.org.uk/...X-Lczy6pb1bHkVGNvOg18PxF8Y8vlo-tQ

There are many success stories and I hope that your husband has an excellent response.

We have an Immunotherapy Facebook support group that is affiliated with the charity.

There is also a Lynch Syndrome UK Facebook group.

Links below.

Please feel free to ask me any questions.

Thanks @lousie28 for the tag :x::x:

www.facebook.com/groups/lynchsyndromeUK

www.facebook.com/groups/2652138928151116

HH79

In addition to great info from Jane, depending on number and size of nodes, radiotherapy can be an option like SABR, MR Linac & Cyberknife @Hayleyc89

Hayleyc89

@Jane39 thank you so much for replying and your story is so positive it gives me so much hope :x::x::x: @HH79 thank you for replying to me :x::x::x: