Darragh
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Hi, I am now 3 years post diagnosis of stage 4 cholangiocarcinoma (peritoneal and bowel mets). I’ve had
My most recent chemotherapy was Acelarin,which is a gemcitabine analogue being developed by a company called NuCana . I was travelling from Ireland to Manchester to receive this on a weekly basis.
It certainly seems to be effective at keeping the disease at bay, although I did struggle with side-effects of nausea in particular. They subsequently brought down the dose and I was tolerating it much better.
The acelarin has been on hold for the past 9 weeks as I saw a surgeon in Dublin who performed an ileostomy to relieve my longstanding subacute obstructed bowel. Although I am now unobstructed I still have issues with vomiting, which is being attributed to a mechanical upper GI problem (I don’t think anyone really knows why I’m still vomiting!). I have been receiving TPN (feeding through PICC line) since November and thats been keeping me going.
I hope to restart the Acelarin soon once my symptoms improve somewhat. I would recommend Acelarin as a treatment for those who have exhausted other chemotherapies. It must be said that one of its selling points is that it should be well tolerated, and I did struggle with side-effects in the initial weeks.
I haven’t been able to get enough viable tissue to have a molecular analysis performed thus far, although another sample has been sent to Foundation One recently so hopefully this may shine a light.
Hope this may be of help to someone, Darragh
Many thanks for the kind welcome Gavin, and for the pertinent questions Billy and taylorjm.
HIPEC: This option was discussed and the severity of this treatment was a concern. As with any treatment there is a risk/benefit balance and given that I’m doing quite well and that the HIPEC is not a curative procedure, it was recommended to continue on standard chemotherapy. It remains a future possibility, there are however “low hanging fruit” options that i would prefer to explore first when the need arises.
Cannabis oil: This is illegal in Ireland, although the process for medicinal use legalisation is progressing. Never-the-less, I have managed to procure some and I have used it successfully to treat my post-chemo nausea which had been very severe. I’m all in favour of it being legalised as this will bring some kind of dose standardisation – I’ve had 2 nights where I was tripping out of it and extremely paranoid. Quite funny in hindsight but horrible at the time.
I know there are some anti-cancer effects of cannabis oil proposed, but I’m not sold on the research I’ve seen to date. I appreciate that there some superb outcomes anecdotally.
Best regards, Darragh
Many thanks Patrick and Catherine. In answer to your queries Catherine, keytruda is available off-licence here but is very expensive. I don’t have micro satellite instability (MSI/Lynch syndrome), so I have been advised to continue on the cis/gem pro-tems. The Y-90 is not an option for me as I have metastatic disease throughout the omentum.
There is a possibility of starting Acelarin, a gemcitabine analogue, whose phase IIb results were presented at ASCO GI recently: https://globenewswire.com/news-release/2018/01/19/1297904/0/en/NuCana-Announces-Promising-Clinical-Data-at-ASCO-GI-on-NUC-1031-Acelarin-as-Front-Line-Treatment-of-Advanced-Biliary-Tract-Cancer.html
The guardian360 option is currently being explored, and may be a good option for me as the Foundation One and Caris analyses couldn’t be performed because of insufficient tumour cells in the samples (just loads of fibrosis/scar).
Best wishes,
Darragh
