Stage 4 bowel cancer

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Update on my private consultation today

Thanks to everyone for the kind wishes and encouragement, especially Kawa909 who helped a lot with all the questions to ask. The appointment went well. The oncologist was lovely and explained everything well. I really liked him and he gave me a "glimmer of hope in the darkness". He said that while I was fit and well I should have the bypass operation on my bowel ( I am seeing the surgeon tomorrow at my own hospital) as it was best to do it as a prevention rather than waiting until I go into bowel obstruction which makes sense. The treatment he recommended was the lonsurf pills combined with the Avastin, (which sadly isn't available on the NHS of course.)I have no clue how much it will all cost but it won't be cheap of course. One good thing though, it is priced by weight and I am only about 55kgs now!!
He also said he would write to his colleagues in London and see if I can get on a phase 1 trial which sounds scary but could have good results and I would be a ideal candidate for it. I managed to ask all the questions I wanted, and he answered them all honestly and directly. My sister took some notes but he said that he will write to me with everything he discussed.
I left there feeling a lot more hopeful since I got my last CT scan results a couple of weeks ago now.
Hope you are all doing well with your treatments and beating this (expletive of your choice) disease!


Thinking of you today @LouLoubelle you’ve got this lady :x::x: I love what justhope has acknowledged, trust and respect ✊ pave the way forward lovely :x::x::x:


This sounds good @LouLoubelle , it's so important to have a good relationship with your oncologist, seems like you have now found one who has your back. Hopefully he will be able to get Avastin for a good price.:x::x:

Forum user

Well @LouLoubelle it sounds like you had a very productive meeting with the Oncologist, it makes all the difference if they are positive about things, the trial sounds very interesting and hope that your meeting with surgeon goes well today, wishing you all the best take care cheers John :x::x::x:


Hi @LouLoubelle hope everything went well today with your surgeon.
Sending love &hugs
Take care


Great to see your appointment went well @LouLoubelle. Doesn't it make such a difference to hear a much more positive perspective on your situation. Some do use crowdfunding to raise the cash for treatment so you could also give that some thought. There was a post earlier on the stage 4 Fb group about Avastin costs you may find of interest too.

Sending you lots of love,

Karen πŸ’šπŸ’œπŸ’›β€οΈπŸ’™

Frances Styles

@LouLoubelle, that is great to hear, a much more positive approach is just what is needed. Dave has Avastin and we do believe it's made a great difference to shrinking his tumours, I hope you can find a way forward, I did read somewhere (not overly helpful as I can't remember where) but the Oncologist was advocating to the company on behalf of his patient, otherwise as has already been suggested set up a fundraising site, more than happy to donate, hope today is a good day for you, love Frances :x::x::x:


Loving your update @LouLoubelle ☺️! Lots and lots of positives for you which is just great to read. Sending love and wishing you all the very best going forward 😘 :x::x:


Many thanks for all your kind messages all. I really appreciate your help and support . I may have to cash in my NHS pension to pay for all the treatment. Thanks @Frances Styles, very reassuring to hear it is shrinking Dave's tumours. Hope he hasn't had too many side effects from it.

Frances Styles

@LouLoubelle, he hasn't any side effects from Avastin other than it pushes his blood sugar up, so Oncologist prescribed Metfornin along side it. Love Frances :x::x:


Hi @LouLoubelle
Glad to hear things are more positive for you after this consultation. It makes all the difference knowing there are options to explore.
Take care
Jane :x::x::x:


@loulabelle that sounds a really positive meeting :x: I am glad it went well :x:


Many thanks for all the kind messages , I will post an update about the apt yesterday with my surgeon, a bit later. It didn't go as well as expected unfortunately.
Still trying to get my head around it.


Still praying and thinking of you @LouLoubelle :x::x:


@LouLoubellecit sounds promising , hope you feel better now after positive news .Hugsxxx


Take as long as you need and want @LouLoubelle. It can be difficult enough to process these things without feeling any pressure to share with others too. It's your health and your business! We are all right here for you anytime and sending our love and best wishes.

Lots of love,

Karen πŸ’›πŸ’™πŸ’šβ€οΈπŸ’œ


Many thanks for the messages all. :x::x::x: