jules1982
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Ha – thanks Lainy! The avatar is me and mum at our Christmas party last year. It’s a bit blurry though – not sure how I can rectify this as it took me ages to even figure out how to re-size it
Hi Regina, just to say that i’ve had a look at the research on Psorinum and it looks very promising to me. If my mum wasn’t trying a whole host of other therapies then we’d probably give this a go.
I know that there is a lot of controversary and differing opinions about alterative approaches, but I’m presonally in the ‘pro conventional and pro non-conventional medicine’ camp. Do let us know if you go ahead with this, and how you get on. All the best, Jules.
Hello all, thank you for your replies.
Kris – ‘stable’ is a wonderful wonderful word. How fantastic – we’d take ‘stable’ any day! My mum has just had a repeat scan this month (her last scan was in June), and the tumour had not grown at all. She’d had no treatment in the intermin (long story), so the tumour must be very slow growing or else her immune system must be fighting very hard.
Yes, i’ve started to read a lot of the research and am on the case with immunotherapy. I really do think that there will be something available to beat all cancers, one day in the future. In the meantime, my mum is trialling a vaccine containing mycrobacterium vaccae, alongside her chemo. She’s just started this. It’s not a clinical trial per se, but is a general ‘immuno-vaccine’ that has been trialled with some promising results in other cancers. It’s never been trialled in CC so we really are taking a leap of faith. Some say that we are mad to be giving this a go but our Oncologist has agreed, and since she’s given my mum such a dismal prognosis then we have decided that it’s worth a shot. I’ll keep you all updated on her progress.
Best wishes to all,
JulesHi Kris, thanks for your message. I have read a few of your posts whilst lurking on these boards and your story has brought my mum and I a lot of hope right from the word go, so it’s lovely to hear from you. I’m hopeful that my mum will be doing as well as you, in a few years down the line. I’ll keep you all updated as to how she gets on!
Hi Lainy, thanks, yes we’re staying positive and hopeful that the chemo will kill off the little tumours. Mum is eating well, feeling well, and generally looks like the picture of health, so we’re hoping that she will tolerate the chemo well. Her chemo starts next Weds. Two weeks on, one week off.
She saw her oncologist yesterday, who is unfortunately very negative about the whole thing – we are thinking about asking to see someone else, as I think that positivity and fight goes a long long way. My mum’s tumour markers and bloods are all still within the normal range, and the Onc said that this is quite unusual at this stage of disease – my mum the wonder woman
If anyone is interested, I now have access to the articles above but they’re in PDF format. Not sure how to post them on here, but I’m happy to do so if someone tells me how
Hi Willow,
Yes, thanks for the info. We are looking into immunotherapy for my mum as she would ideally like to avoid chemo if possible. Probably a bit crazy I know but that’s her choice so we’re having to run with it at the moment. We were looking into a vaccine of microbacterium vaccae, which was actually initially used to treat tuberculosis. There’s no evidence of it helping in cholangiocarcinoma, that i’m aware of, but we have a friend who was successfully treated with lung cancer on this vaccine and I believe that there is evidence for it helping in other cancers too.
If anyone finds anything interesting on immunotherapy I’d be most grateful to hear about it.
Hi all,
I just came across these articles on immunotherapy. I was wondering whether anyone has access to the full journal articles as i’m only able to access the abstracts?
Has anyone tried immunotherapy instead of chemo, post-surgery?
Thanks a lot,
JulesHi all,
Thanks so much for all of your replies. I haven’t had time to properly look in to the links that you’ve sent yet as we’re rushing around from appointment to appointment at the moment – i’m sure you know how it is! It’s hard to have to go to work when all of this is going on. Looking after mum’s health seems to be a full-time job in itself and it is definitely my priority at the moment. I will have a good look at the links you sent, later on today.
Re locations, yes, we are spread out a bit, although my folks actually live up in Northumberland and we can practically see Scotland from our back garden, so not that far away from Gavin and Clare when i’m back up home!
Jules
Thank you for your replies and good wishes.
My mum saw Prof. Lodge today and he was great. He generally told her that her condition was very serious and he is unsure whether he can operate. However, he needs to do a further MRI and CT to be sure and he has recommended three months of chemo to start off with, to try and shrink the tumours. Unfortunately I wasn’t able to be there but my mum and dad said that he was lovely, compassionate and they have great trust in him. I just pray that at some point he’ll be able to operate on her. I think that we have quite a roller coaster ahead of us!
Jules
Hi Clare, I can’t see anything about him on AMMF, just had a look now. Thanks Lainy!! I’ll let you all know how we get on!
