What’s left after Avastin and Longsurf?

Loomeytunes2001 9 days ago

13 replies
181 subscribers
740 views

My husband has been on a palliative pathway for almost 3 years.

After his initial op in 2001 (stage 3) he was given Folfox mop up, and than the bombshell on a 6 month scan that cancer has spread to the retroperitoneal, lungs and neck and was deemed inoperable and incurable stage 4.

He was then on Cetuximab and Irinotecan for over 2 years that ceased working.

3 month ago he started on Avastin and Longsurf and now his CEA is going through the roof, the highest it’s ever been! I know some people don't ‘secrete’ the CEA, but over the course of this journey every increase in the CEA has meant progression even when he had small breaks from the Cetuximab etc.

My husband is due a scan on the 25th May with a consultation a week later. I need to be ready because I know they are going to pull the plug on the latest treatment. What options are left? Does anyone know?

Many thanks for reading.

Susan13 8 days ago

I can't say what might be next for him. It seems like there is always another option though.

I'm truly very sorry you're going through this. Sending virtual hugs.

court 8 days ago

Hi Loomeytunes2001

It might be good to join Bowel cancer U.K. forum as they have stage four groups and you might find it helpful to see what other oncologists are doing . I know some repurpose drugs that have been successful in the past .

Might also be worthwhile looking at the clinical trials available too just to see .

But I really think getting info from the people over on bowel cancer U.K. might give you more information .

Take care , I know it’s hard but good on you getting information ahead of time . I was like that with my mum and she managed to stay around for 15 years after a stage 4 diagnosis.

Court

Helpline Number 0808 808 0000

court 8 days ago in reply to court

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/this-trial-is-looking-at-a-drug-called-mk-2870-for-cancer-of-the-digestive-system?_gl=1*yzoryv*_gcl_au*MTEzNjIwODkyMS4xNzQ2NTU5Mjk5*_ga*NjE0NzgzOTEuMTc0NTU2MzEzMg..*_ga_58736Z2GNN*czE3NDY1NTkwMTIkbzMkZzEkdDE3NDY1NTk2NTckajYwJGwwJGg

Not sure if at all appropriate but just to show you different approaches to trials .

Helpline Number 0808 808 0000

court 8 days ago in reply to court

www.cancerresearchuk.org/.../a-trial-looking-at-a-different-way-to-give-chemotherapy-called-pipac-for-cancer-that-has-spread-to

Helpline Number 0808 808 0000

court 8 days ago in reply to court

www.cancerresearchuk.org/.../a-trial-looking-at-a-drug-called-ucb4594-for-cancer-that-has-spread

Helpline Number 0808 808 0000

court 8 days ago in reply to court

There are a few other trails on the site for bowel cancer that has spread and I does say the patient can get the information from their oncologist to see if any are suitable .

Helpline Number 0808 808 0000

Loomeytunes2001 8 days ago in reply to court

Hi Court,

Thank you for your reply, advice and all the links. We will definitely be looking into trials.

Your mum did so well, absolutely amazing ️

Many thanks

Loomeytunes2001 8 days ago in reply to Susan13

@Susan13

Many thanks for your kind words ️

court 7 days ago in reply to Loomeytunes2001

Star74

What was the other test you previously mentioned regarding tumour testing and the best chemo ?

Do you have any other ideas ?
Court

Helpline Number 0808 808 0000

Star74 7 days ago

Hi Loomeytunes2001 and thanks for the tag court

I have heard of people who's CEA jumped up when they started Lonsurf, hopefully this is the case for your husband.

As for next treatments I would ask to rechallenge folfox as it was so long ago. Athough we would need to know if progression occurred while he was on it as mop up or after.

Then there is Regorafenib and after that is Fruquintinib (although I'm not sure if this one is accessible on the NHS yet)

You can also have a liquid biopsy done, I've heard Datar or Guarant 360 are good but there are others available. Speak to your husbands team who will be able to facilitate it. You do have to pay for it though and generally the results dont change the treatment pathway but for a few, it can show up new/changed mutations which could mean that other chemo's not usually used in the BC arena can be accessed.

As Court says, you can look into trials, one i would be interested in is Bot/Bal but I'm not sure what stage it's at, def worth an ask.

There's also always a second opinion if you are not confident that his onc is exploring all avenues.

Really hope that the CEA is just a temporary spike though and you won't need this info for a good while yet.

Michelle x