Stage 4 bowel cancer

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PinkJoJo

Any advice please?

Hello everyone, i have lurked around here for quite sometime, but never posted before. I am just wondering if anyone can provide any advice? My lovely mom was diagnosed with stage 4 bowel cancer, a solitary met on the liver and evidence of disease in 3 out of 21 lymph nodes back in feb 2019. She had a bowel resection which went really well, then chemo followed by a liver resection in October 2019. She had mop up chemo that finished in feb 2020, then scans showed 3 lesions on the liver. They told us this was because the liver resection had been done via keyhole and they had missed the tumours and taken away healthy portions of the liver. She was considered for NAR but it was right as covid took hold, they told us the lesions were too small and they put her on low dose capox holding chemo “in light of the covid pandemic” - she stayed on this until September 2020. We wonder whether this was more a second choice option because of coronavirus rather than she suddenly became unsuitable, as it was a very sudden change of plan.
She had a further liver resection (open surgery) in October 2020 but one of the tumours extended right to the margins. Further scans showed lesions in the same margin and another area and she had a further liver resection in September 2021.
Scans at the beginning of 2022 showed another recurrence of lesions, 3 I think and they put her on a different chemo that meant she lost her hair. She also had treatment delayed as she had a blood clot caused by her picc line, plus another picc line fell out. She eventually restarted chemo and had scans done in April. She was due to have her last cycle of chemo last Monday 6th June. She saw her oncologist first who said the cancer had spread, there were more lesions on the liver plus some around the lining of the stomach (I assume that’s the peritoneum?) He said the cancer had adapted to the chemo and become aggressive and the only option now is trials if available (which she has agreed to) and lonsurf. The last cycle of chemo didn’t go ahead as it was pointless.
My mom left the room and didn’t want to know prognosis, but she allowed my sister to ask, he didn’t want to commit but said months without treatment, with lonsurf (if she tolerates it) and it works it may contain it for 6/8/10 months, but it’s difficult to say.
I have done so much reading over this last week and I feel bamboozled, because really is that it? Other than having no hair she’s ok, she’s 66 but not an old 66, has managed really well since diagnosis and people always comment how well she looks. I’ve read about second opinions, other treatments such as operations on peritoneum mets, avastin etc but I just don’t know where to start? Does anyone have any advice, what to do, what to ask etc as I want to ensure we have exhausted everything that may possibly be out there. She isnt due to start lonsurf until a week on Friday which seems a long time :(
Thankyou for reading :x::x:

Lirio345

Good morning @PinkJoJo, welcome to the forum or should I say posting on the forum, but very sorry to hear about your mum.

My first though would be to pursue a second opinion, which may well agree with the current treatment plan, but in that case gives reassurance. Your mum’s current oncologist or GP can instigate this.

If you wanted to shared very broadly where your mum lives we may be able to make some suggestions for you. Take very good care, :x::x:

PinkJoJo

Hello @Lirio345 thank you so much for your reply. My mom is based in the West Midlands and has had bowel and chemo treatment at New Cross Hospital in Wolverhampton and liver treatment at the Queen Elizabeth Hospital in Birmingham. Any suggestions will be gratefully received, I really do appreciate it thank you so much :x::x::x:

Lirio345

Hi again @PinkJoJo, you are very welcome. The most obvious suggestion would be The Christie in Manchester, which is a specialist cancer hospital with an excellent reputation. Others may be along with some alternatives.

Take care and please stay in touch, Kim :x::x:

PinkJoJo

@lirio Thank you I will do, you take care too Kim :x::x:

rosa123

Hi @PinkJoJo your poor mum has really been through it! I also have peritoneal mets and have just been turned down by the Christie for surgery. It does sound like a second opinion would be a good idea at this stage. People talk very highly of Jamie Murphy at Imperial in London; apparently he will often operate where other surgeons won't. I am currently waiting for a second opinion from him and would be happy to share contact details and MDT days etc if it helps :x::x:

PinkJoJo

Hello @rosa123 thank you so much for your reply. I would be very grateful if you could share any details you have, that would be really helpful! I’m so sorry to hear you are going through this also, and I have absolutely everything crossed that you get a positive outcome from Jamie Murphy! 🤞🏼 :x::x::x:

rosa123

Thanks @PinkJoJo I've sort of resigned myself to starting chemo again on Monday, but we will see... I've PMd you the details. Good luck and let us know how you get on if you can :x::x:

Cheggers

Hi @PinkJoJo Did your Mum have any targeted drugs alongside her treatment? If not, it is possible to apply for compassionate use through the drug companies, as they are only usually available as first line treatment on the NHS. There are different targeted drugs available depending on whether you have gene mutations or not.

Cruella
Quote from @rosa123:
Hi @PinkJoJo your poor mum has really been through it! I also have peritoneal mets and have just been turned down by the Christie for surgery. It does sound like a second opinion would be a good idea at this stage. People talk very highly of Jamie Murphy at Imperial in London; apparently he will often operate where other surgeons won't. I am currently waiting for a second opinion from him and would be happy to share contact details and MDT days etc if it helps

Christie is our second opinion and also won't operate although the patient is a fit 27 year old with short prognosis. Do you know if we can apply for a second second or third opinion??!!!!

PinkJoJo

Hi @Cheggers - I don’t believe she did, I went to all her early appointments pre pandemic and I’m certain it was just two types of chemo in between her bowel and 1st liver resection. I will look into this, thank you so much for the info! :x::x:

PinkJoJo
Quote from @rosa123:
Thanks @PinkJoJo I've sort of resigned myself to starting chemo again on Monday, but we will see... I've PMd you the details. Good luck and let us know how you get on if you can

Good luck for chemo tomorrow @rosa123 ❤️❤️