January 25, 2018 at 11:51 am #96529taylorjmParticipant
If the oil had you tripping out then it must be a higher thc oil, which is good, but you would need to take enough to get past the tripping and it will knock you out. Once you get to that amount, keep it there for a couple months. You may sleep constantly for the first few days, but then it will stop. The tripping out will stop too. After 60 days, you can go down to a much lower maintenance dose. Highly recommended. My MIL is 75 and is also inoperable and according to the doctors, she should be dead by now. She has no symptoms, no pain, liver is fully functioning and the tumors are shrinking fast.January 25, 2018 at 8:09 am #96528
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, DarraghJanuary 24, 2018 at 7:07 am #96522taylorjmParticipant
There’s one thing you haven’t mentioned, and I don’t know how it’s treated in your area of the world. Have you looked at cannabis oil?January 22, 2018 at 6:53 pm #96507vtkbParticipant
Darragh, you mentioned you have mets in the omentum- have you sought out any surgeons for their thoughts on HIPEC? While I wouldnt call it a cure, I know some surgeons have tried using it in cholangiocarcinoma patients, and it was offered to Kathy initially (but ultimately wasnt done during her resection as the sampled nodules in her omentum were negative for cancer cells). When I was searching for possible treatments I believe someone on this forum had a relative in Germany that had it done, but that was a very old post from what I recall.
-billyJanuary 22, 2018 at 8:16 am #96500gavinModerator
Welcome to the site, although I am sorry that you have had to find us all here. But I am glad that you have “delurked” and joined in with us all as you are in the best place for support and help and I know that you will get a ton of both from all of us.
Thanks loads for sharing everything that is going on with you and what has happened with all of this. You sure had had a ton of stuff to deal with during all of this and I so love to hear that fighting attitude of yours, excellent! From what I read from your post it also sounds like you have a great support network around you with your wife and son, and now you have all of us as well fighting with you in your corner so well done once again from coming out of the shadows as you say and delurking! I know that we have a ton of lurkers worldwide who just want to read the posts and stuff and hopefully you posting now will help some of them come on board as well.
You are ALL most welcome here if you are reading this!! We don’t bite!
Just wanted to throw this in as well in case you didn’t know. Prof Valle has been with the CCF for a long time now and is the Vice Chair of our Medical Advisory Board. He, along with a load of others have made many presentations at our Annual Meeting in Salt Lake City and hopefully he will be there again at our next one very soon.
Anyway, just thought I would throw that in in case you did not know that and I am real glad to hear that you have consulted with him as well. He is very experienced in dealing with patients with CC as you say and has treated quite a few of our members or their loved ones.
Looking forward to hearing much more from you Darragh.
My best to you and your family,
GavinJanuary 21, 2018 at 5:26 pm #96497
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).
DarraghJanuary 20, 2018 at 5:13 pm #96491herculesModerator
Darragh, welcome to our community of sharing survivors and caregivers, nurses, and others with experience with this rare cancer. As you are a doctor, and a patient, it is hard to give you advise as you seem to be doing all the right things, you have studied us a bit so you know what we are about. Thank you for sharing your story and what you have done so far. Keep spending time with that son of yours and your supportive wife as laughter is great medicine, I wish you the best, PatrickJanuary 20, 2018 at 5:04 pm #96490middlesister1Moderator
I am so sorry that you won the lottery of having such a rare cancer, and one that is even rarer in someone you age. Although I may be looking into Irish citizenship ( my cousin just received it), I am not familiar with treatment options. I’m hoping some of our international members will step in.
I agree that cancer seems to be the “norm”. My mother has 4 condos on her floor and in 3 people are going through cancer treatments. I don’t know, but are blood samples like Guardant360 being used there? My mother went through gem/cis, Y-90 and now we will be starting proton radiation shortly. However, we also were fortunate to have 3 years of treatment-free living. We’re hoping to get it again. You’re correct that the original 3 cycles of chemo bought us time to look into other treatment options. It was also interesting that when we went yesterday to the proton radiation center of Univ of MD, the concierge told me she has many international patients who come over for treatments.
With Mom, we’re waiting for the Foundation one testing to come back- in Ireland, do you have the possibility for your ONC to try keytruda or other options off-label? And, if by any chance you have situation similar to my mother as DX ( one localized inoperable tumor with no mets), the Y90 gave her wonderful results. Please PM me if you’d like to discuss.
CatherineJanuary 20, 2018 at 3:56 pm #96488
Hi, my name is Darragh. I am a doctor (cardiologist) and was diagnosed with stage 4 CC at the age of 38 in May of 2016.
Initially I underwent biliary stenting, and a transhepatic drain. I had nearly six months of CIS/GEM before it was discontinued because of intractable nausea. I’ve had various ups and downs, and have gone through a few different chemo regimes: FOLFOX, XELOX, a modified FOLFOX, and irinotecan. Wonderfully my cancer responded to most of these treatments, but each was limited by its specific toxicities after a while (except for the irinotecan which was vicious and stopped after 2 doses). I now find myself full-circle, back on CIS/GEM (cycle 5), and am tolerating the nausea thus far.
I’ve had 2 percutaneous biopsies and one biopsy performed under laparoscopy. Each tissue sample showed loads of fibrosis, and not enough tumour cells to allow next generation sequencing molecular/genetic analysis.
I have had excellent care from my oncologist Dr Brian Bird in the Bons Secours in Cork, Ireland. I have also sought opinion from a previous classmate of mine Dr. Richard Bambury, who is an oncologist in Cork University Hospital. I have seen Professor Maeve Lowry in St. James’ Hospital, Dublin, and Professor Juan Vallé, Christie’s Hospital, Manchester, UK, both of whom specialise in CC.
I practise Qi Gong most days, go swimming 3-4 times per week, eat a largely vegetable-based, but all organic diet.
I have acupuncture sessions once a month.
I have undergone a mindfulness course (MBSR).
I work 2 days a week at the university hospital.
As I expect most people have done, I have trawled the internet for any and everything cholangiocarcinoma-related. I found this website and discussion board close to the time of my diagnosis and have found it to be a wonderful source of hope and comfort, and an invaluable source of information. I felt that the time is right for me now to stop “lurking” and come out from the shadows.
I am indebted to my wonderful wife Suzy, who has shouldered at least half of this burden, and my wonderful son Oscar (now 4),
who keeps us both smiling and laughing.
I have great support from family, friends and colleagues.
Having cancer is now “the norm”, and I’ve recently been brave enough to dream into the future. I feel fortunate that we live at a time when so much research is bearing fruition, and hope for a cure.
I feel so lucky that my cancer is responsive to chemotherapy, and that it has bought me time to explore further options.
Love and best wishes to all,
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