Stage 4 bowel cancer

Fighting4hubs

Help and advise urgently please !!!

Hi all, once again I’ve not been on here for some time, as things have been going well for Chris, I found when I was on here I spent too much time researching all the time and not living in the moment and enjoying what we have!

I’m afraid I tend to turn to this special forum and website when things aren’t going so well and need advice, so I hope you won’t mind, but this is where I find myself once again!

Just to recap, Chris has been doing extremely well after being told he had 9-12 months!
we are now 2 1/2 years on this journey over 40 hours of surgery folFox, folfiri and a host of peritoneal mets that just will not budge!

Chris has had HIPEC with Jamie Murphy at Imperial In 2018, and this was a success and this gave us nine months disease free, until Cancer returned in October last year and sucked in his bowel in, it was touch and go and Jamie Murphy performed 12 hour life-saving operation to take out the tumour! Fast forward to now and the last eight months have been very up-and-down.

In January Chris presented with no evidence of disease post surgery, but they felt mop up folfiri, would be the way to go, he completed five rounds, but struggled on this chemotherapy with various upset stomachs, diarrhoea and sickness - Together with a rising CEA (which has never happened before!)
I queried with our team at the Marsden the CEA rising and they agreed to do various scans and in May an MRI / PET finally picked up peritoneal disease again! The chemo was stopped while they worked out a new plan, however this took some eight weeks to sort out and agree on a treatment plan and I feel during this time, is likely to be when the disease spread!

Finally on the 5th June he went back on FOLFOX treatment, after a lot of debate about his neuropathy from previously (which was minimal) it was agreed to rechallenge with this line of treatment.
All had been going well, with Chris being able to continue working throughout, both at the Fire Brigade and also running his own building firm, building extensions and doing huge landscape jobs! The CEA was dropping from 39 to 33, 25 and then at last chemo he had a slight peak back up to 33, (which the team said was likely inflammatory as he has such bad diarrhoea ) but then proceeded to go into a semi bowel obstruction a few days later!

We spent a week in St Mary’s London, where they have confirmed with a CT scan that the peri mets are tethering to the small bowel & Chris is in trouble of going into another obstruction (although he is so incredibly well, bloods are normal, and the obstruction didn’t last long, he was still able to have bowel motions and wind) it seems to have resolved itself once again.

Since being discharged he has been put on a low residue diet, he is still working on a big extension job and feels very well! However it’s now been 4 weeks since the last chemo (having a break due to the partial obstruction) and we had a call from the Oncologist last night to say they have reviewed the MRI & Pet from May with the CT at St Mary’s last week and they can see extensive peritoneal mets and have no suggested we stop FOLFOX + Cetux and proceed to Lonesurf tablets!!!!!!

Now forgive me, isn’t this an end of life treatment !!?!?!?!? That’s what we were always told, that was there for end of life - to buy some time?

We’re shocked and angry!! Why are they giving up on us? Chris is more than well and always has been this whole 2.5 years! He’s astounded the team with his mind, and his body! His bloods don’t even show he’s on chemo and he heals so well! (Cuts and nasties from work have healed incredibly - despite almost tipping me
Over the edge !! )

So what do we do now? My gut feeling is the Folfox is working it’s just not been long enough? And this was already growing ?? Or do we look to do Folfiri again with added Cetuximab , which was the teams thought process when concerned Folfox would give neuropathy!

What about drug trials; Avastin, the Beacon Trial? I’m so mad that Chris has proved he will more than take anything they throw at him, he bounces back and continues to maintain a work / home life balance for his family DESPITE the shite that is cancer ! Why are they giving up on him?!?!?

Should I request a scan at The Marsden - rather than rely on x2 scans they are possibly not comparable being from x2 different hospitals??

I emailed Mr Murphy about surgery and he said after the 12 hour surgery last time and the scar tissue he had to attempt to get through (which took 5 hours alone), it’s jusy not feasible at the moment & it could spread the cancer even more, given the weakness to the bodies immune system for surgery!!

If anyone has any advise or comments or drug / treatment ideas for me to suggest; please please come forward??? We’re on our way to Marsden now to discuss Lonesurf and we are desperate !!!

Love Sarah and Chris & our beautiful baby girls :x: :x: :x: :x:

Lizalou

Hi @Fighting4hubs
I'm so sorry that you are both going through this latest scare. I certainly can't answer any of your questions but they all sound very significant and you obviously need some answers. So I hope you have your questions written down and get some answers today.
Please take heart that Chris is strong and fit and that there are options for him.
Thinking of you both today :x::x:

Bear G

Hi @Fighting4hubs
I’m sorry to hear Chris is back to the fight again, but can reassure you that Lonsurf isn’t necessarily ‘end of life care’, it’s a newer treatment that was only approved a couple of years ago and so gets held back until more standard treatments have been tried. That’s the normal way to use newer drugs in all aspects of medicine so it’s nothing to worry about.

Could is suggest posting your questions in Ask The Nurse so you can get expert advice from them?

Hopefully you’ll get some better clarity from The Marsden today, please let us know what they say.

Big hugs
Bear
:x::x:

charleyb

Big hugs Sarah @Fighting4hubs you guys are just amazing, and i am so glad you came on here to ask, hoping someone with peri mets may offer some advice :x::x::x::x::x::x::x:

Sasa

Hi @Fighting4hubs I am so sorry about all this, and yes my feeling was always that Lonsurf is another way of saying ‘you have a year left’.

I guess they’ve suggested this because, once the cancer comes back, even if it is still keeping things marginally in check, the cancer is deemed to be ‘resistant ‘ to that drug, and so the thinking is, that giving a different drug will knock it back more than just carrying on with one that is less effective.

Peri mets are hard to treat with chemo due to the lack of blood supply, so hitting it earlier with a new drug can be very beneficial.

Mark was on Lonsurf and it was a nightmare for him, but other people have had very good responses to it, so it’s just a question of what works for Chris.

Mark did consider (and it was suggested by his onc at the same appointment that he put Mark on Lonsurf) having a genetic test whereby your actual biopsy samples are used to test on different chemo drugs to see which drug for your specific cancer would work most effectively.

This goes against the standard protocols, but does provide evidence for your onc to go back to whoever makes the decisions to make a case for other potentially non CRC chemo to be prescribed for your hubby. It may or may not be successful and so is an expensive gamble. The genetic testing cost alone is circa £10k and they may not find any drug more suitable than, say Lonsurf.

Anyway it may be worth an ask from your onc, it’s another conversation to be had. Sounds like your hubby is young, strong and has everything to live for, so long may that continue

Good luck my lovely, he is a lucky boy to have you beside him,

Sarah :x:

Christine

Hello @Fighting4hubs.
This may or may not help 😣.
My daughter arrived at 3rd line treatment and was offered Lonsurf.
She declined in favour of a Phase 2 trial.
The trial did not work for her, but the time without chemo allowed the cancer to take over.
We decided long ago not to regret informed choices we made - but had she tried Lonsurf she may still be with us. Not a life saver but giving that desired bit longer.
My heart goes out to you, and I send you love and hope,
Christine :x::x::x::x::x:

Tiffany

@Fighting4hubs

Hiya. So strange as I was actually thinking about you the other day as hadn't heard from you in so long. I nearly PM'd you but didn't in case you didn't want the intrusion.

Anyway, glad to hear from you but sad that Chris is having all these issues. I can't claim to know that much as luckily for us Mike's chemo regime did the trick - he was on FolFox with Avastin. I know so many people who have had success with Avastin but I also know that it only suits people who are Kras Mutant I believe.

There have been a few posts on here recently about the fact that the price of Avastin in certain hospital trusts has gone down from £2K a session to about £350 per session as it's patent is running out but I am not an expert on it.

I would definitely be looking into Avastin if I was able to. Hope you can find some more answers soon.

Lots of love, Tiffany :x:

stu

Is there any clinical trials with Immunotherapy ? In America they are looking now at the tumour mutation burden for MSS patients . Some are responding when they have exhausted chemo . Worth having a chat about it with your oncologist. Or if he is MSI even better .
If he is still doing physical work it sounds as though he could tolerate more treatment just ran out of protocols. Worth looking at clinical trails although some do benefit the educational process some have little value beyond someone’s PHD so I would scrutinise what is offered .
Sounds as though he is still pushing back ,
Stu

kdan

Just to add as well the genetic test should not cost gbp 10k. I've an invoice for Roche's Foundation One genetic test for Eur 3,010. It's well regarded if google it.
It will suggest any currently available meds suitable & then list any meds being tested/trialled where u might be suitable.

GD62

Hello @Fighting4hubs

So sorry to read about Chris as similarly have a peritoneal and liver recurrence post 18 months CRS/HIPEC and awaiting a treatment plan. My scan was about six weeks ago, but I am not on any treatment while I am waiting. I have changed my Low Dose Naltrexone 4.5mg daily dose to every two days with cannabis oil on the two off days and colecaciferol d3 20000 units daily, along with 3000units of alpha lipoic acid, turmeric and omega 3 three times daily. It may not do anything but I'm feeling like I'm doing something. They said 18 months and going to make the best of it.

Hope you get an appropriate treatment plan and sending you both prayers and hugs :x::x::x:

Fighting4hubs

Hi all, thank you for all the wonderful messages of support and prayers and hugs for us all.
So much has happened in the last few days and week I don’t even know where to begin to start!

To give a quick update and recap, we were heading to the Marsden the last time I wrote on here with concerns of end of life treatment and running out of options. We were presently surprised that the team were exploring all options and weren’t necessarily heading straight for end of the road options.

Our oncology team spent a long time with us and explained that it’s not the extent of Chris’s disease that’s the problem, it’s the location.
He has fairly minimal mets and these are localised spread within the peritoneum, however, one is abutting the dome of his bladder and the other is “tethering” his small bowel. The bowel one is the major issue because of the risk of obstruction & once again he went in to a sub acute bowel obstruction this weekend!

He is now home, but I’m not so sure he’s out the woods with it just yet!

Regards to treatment options the aim and plan that has been made is to resume on Folfox and added Cetuximab for 2 cycles (we are paying for the cetuximab self funded) and do and MRI and Pet scan to see if the disease is 100% progressing on this line. If it is, then we will need to consider all other options !

I have pushed Avastin with the team, but it appears there is no option for us to have this co/part/ self funded on the NHS and remain an NHS patient for everything else we need?
I have seen @Sean a thread @charleyb kindly sent to me. Any advise on this would be good and also what we put this with? There has been a suggestion to have to with the lonesurf? Or 5FU?

Thanks again for all of your help and advice, I’m only sorry I’m not on here more to help others and give advice more often just starting out in this scary world of cancer. :x:

Sean

Hey @Fighting4hubs you'll need an NHS doctor who also does private to manage it that way. Otherwise you gotta go full private. Not sure if any docs at your Trust do this, but worth enquiring about. It won't be easy arranging but potentially something that gets you to the next stage.
I do capox (capecitabine & oxaliplatin) with Avastin.
How are you accessing the cetuximab?

All the best!

Sean

Rozies

I am sorry to hear what Chris (and you) have gone through and still are. With regards to Lonsurf I have commented on another thread recently about our experience and so have copied it over.

My husband was on irinotecan which shrank the tumour a little, enough to remove the bowel tumour, but there was a large peritoneal met which was stuck to important structures so couldn't be removed. He was then put on oxaliplatin which had no effect at all, so he was put on Lonsurf.

That was over two years ago - the peritoneal tumour continued to grow a little very slowly but then stopped growing and has remained stable since, he has two lung nodes too which have remained stable. We don't know how long this will last but hope long enough for some more effective treatment to come along. His CEA is always high somewhere around 700, goes up and down..up at present so the tumour is active.

It affects his taste and he feels mildly nauseous for the two weeks on chemo but he can tolerate it and finds that if he keeps busy, even though it is the last thing he wants to do, he actually feels better for it. He is a keen cyclist and gets out as much as he can as it seems to help his wellbeing.

Lonsurf is supposed to cause low blood counts so, following the two weeks chemo tablets, he has a precautionary week of Filgrastin injections, self injected, to stimulate white cell production.

Disappointing about the Avastin, I had hoped it was something we could look into.

Good luck with the treatment plan.

crhl

Thank you..sorry for the belated reply. Husband had litres of fluid drained from lungs. Started Lonsurf again yesterday. Would be really happy if it stabilises my husband.

determinedjoan

Sooo soz to read that ur dear husband has been poorly; all fingers & toes crossed 🤞 that Losurf helps him :x:

Sarah Morgan

@Fighting4hubs, my husband has had a chemo break since the end of June. His last growth has shown some growth in his lung & liver mets. He was expecting to go back on Folfiri but they’ve given him the option of continuing his break, restarting Folfiri or switching to Lonsurf for “better quality of life”. I’ve read very mixed reports about Lonsurf but my husband thinks he’ll give it a try. He tolerated Folfiri well & has been able to work for 5 days out of his 2 week cycle. He’s still been given the option of switching back to Folfiri if he can’t tolerate the Lonsurf.
Thinking of you all :x::x:

determinedjoan

Thinking of @Fighting4hubs & @Sarah Morgan & sending love & hugs.
Whatever your husbands/families/teams hv decided upon for treatments, really hope you’re all feeling as well as U possibly can under extremely difficult, stressful & worrying circumstances.
Sending all my love, hugs & healing, soothing vibes :x::x::x:

Sarah Morgan

@determinedjoan, thank you for your kind words. We’ve been to the Christie today (where I also work!) & Ian’s consultant has mentioned Ian having further testing looking at his DNA so he’s going to have that next week. The testing is done in America so takes time but he’ll start Lonsurf in the meantime. This testing has not been mentioned before so we are grateful for this opportunity. Thinking of you :x::x::x:

determinedjoan

Good o . Thank u :x: