Newly diagnosed with Cholangiocarcinoma

Hi Andy. Thankyou for the information about Facebook and the charity.  It will be helpful as I feel we haven’t had much support so far. You say you have had this cancer for 4.5 years. This gives me a little hope as my husband was given 18 months to two years. We are hopeful he may have longer. Can I ask you about the whipped procedure as no one has mentioned this to us. Also if you don’t mind telling me what drug trial did you go on ? Have you had any other treatments that were helpful. . Thanks. 

Hi. Thankyou for your reply. My husband had Gem/Cis . Eight rounds. He finished this just before Christmas last year. He didn’t fare too badly with side effects. The oncologist told us that this was one of the gentler chemo therapies. He was very tired. Lost some hair, which did grow back. Felt a little sick but the sickness tablets helped. He was put on steroids and they made him put on some weight round his tummy and face but he has lost that now. He decided that he wouldn’t go on the antibiotics because of the effect on his gut and I suppose he was lucky in that he didn’t get any infections..The side effects didn’t occur till a couple of weeks into his treatment.
In March he began to get neuropathy in his finger ends and feet. He didn’t get this during chemotherapy but strangely three months after. He still has this but is using eurea cream to help. He finds it difficult to button his shirts and is a little unsure of his footing. It’s not getting any worse and the oncologist said it shoul disappear eventually. I think the worse experience for him was sitting with other cancer patients, some a lot worse than him. I know this bothered him as it gave him thoughts as to what his future might look like. However, I would say that the experience wasn’t as bad as we expected. Hope this helps. The important thing is that it shrunk the tumour by 2 cms, which made it worthwhile. Hope this helps. X

Hi Andy Thankyou for this information. We don’t feel like we have had much support , so this will be helpful. You say you we’re diagnosed 4.5 years ago. This gives me a little hope as my husband was given 18 months to two years to live. We have already had a year and luckily the tumour is still smaller than it was in the beginning. Could you tell me what the whipple  proceedure  was for, as no one has mentioned that. Also would you mind telling me what drug trial you were on. Have you had any other treatment that has been helpful. Thanks. 

Hi thanks for that. We are trying to live for the day and not look too far into the future. It takes a bit of practice but has helped us. Can you tell me if your stent was successful. Thanks

Hi Charlie, my husband has now has a metal stent & thank goodness no bag . Which I’m glad to say it’s working, within two days his jaundice had gone down by half . Not a very nice procedure to have but it worked.He is still in hospital now after spending 3 night in there , o how I have missed him . I’m so glad the chemo has helped your husband & it has shrunk by 2cm that’s really good news & the side affects not too bad . We have in away been dreading the chemo so your news is fantastic & it helps me knowing there is hope having the chemo . I can easily imagine what was going through his head while having chemo as it’s bad enough for us . While writing this I had a phone call from my husband saying I can pick him up at 2pm , it’s only 12pm so I’m literally clock watching lol . We have a oncologist appointment next Thursday & should hopefully hear when he starts chemo. Thank you so much for keeping in touch & I really hope your journey just gets better & better. Big hugs to you , your husband & family x

I had a pancreatic, as well as a bile duct stent fitted. The pancreatic stent was removed after a fortnight,thankfully, as it was very uncomfortable. But the bile duct stent has been relatively ok. Occasionally I get some sort of cramping,where I believe it to be, but very short lived (a minute or two). I am living a very normal life and my philosophy is I’m going to enjoy myself as much as I can. Quality over quantity 

Hi Charlie,

I’ll try to give a quick overview of my journey so far.

First symptom was jaundice, completely out of the blue in Jan 2018. First thought it was a gallstone blocking the bile duct. Had an ultrasound which ruled out the gallstone, so a tumour was assumed and I had an ERCP to put a stent in the bile duct as it was clamped shut. The ERCP didn’t go well and it gave me acute pancreatitis. Ten days in hospital, but the pancreatitis cause a 2 litre pseudocyst on the tail of my pancreas. It was necrotic and I had to wait for 3 months before I could have it removed. Once removed I had numerous MRIs, CT & PET scans and biopsies but cancer was not confirmed. However the stents kept getting infected so we decided on a Whipple to remove the bile duct. It’s a common surgery for extrahepatic tumours in the bile duct, but is a complicated surgery and lasts between 6-12 hours depending. 

I had the surgery, histology confirmed cancer and I did 6 months of Capecitabine as a precaution. After 6 months, scans showed I had 6 tumours all over my torso. In Feb 2019 they told me I had 2-4 months and recommended moving to a hospice. However, we changed the chemo to Gem/Cis and after 5 months I was left with 1 tumour in the surgical bed. 

I had a sample of the tumour sent to Foundation One to test for actionable mutations for immunology but I had none. However, there was an immunology trial for non actionable mutations, M7824 and I joined that trial at UCLH in Nov 2019. I was only on it for 3 months when it started to damage my kidneys so had to stop. But the tumour had started to shrink, so no further treatment. Over the next 2 years, without treatment, the last tumour shrank by 40%. Unfortunately, I was the only subject in the trial that had a response to the drug and the trial was recently cancelled. So for the last two years I’ve been going to UCLH for quarterly scans and remained stable, so no further treatment.

During the first two years after being diagnosed I tried to work while as I was having treatment and I couldn’t do my job properly and wasn’t getting enough rest, so I took early retirement to focus on my health. I’m 56 now and it’s been 4.5 years. After the awful prognosis, I didn’t think I’d last 3 months but here I am. Two things I have learnt more than anything else is the true meaning of hope and the true meaning of gratitude. 

I’ve been on FB groups almost since diagnosis and AMMF.

If you would like any more details or experiences please let me know and I’ll do my best to address them.

All the best. 

Thankyou so much for this it was very helpful. So much trauma in the beginning for you, even before diagnosis. Seemed the Gem/Cis was beneficial to you,just the same for my husband. So glad you have had longer to live. My husband is 69 , so a fair bit older but still feels robbed of life. However, some good news in that the pemigatanib is working and his tumour is half the size. There seems to be other options later on down the line, so we may be looking at a bit of a longer life as well. Cancer certainly plays with your mind as well as your body. 

Hi,  I hope the stent is still helping and that your husband is feeling a little better. After your oncologist appointment do you know when he starts chemotherapy? My husband had mouth wash and sickness tablets which helped. I remember now that his sense of taste went a little and his appetite but he forced himself to eat and luckily didn't loose any weight. We saw our oncologist on Friday and had some relatively good news. His scans showed that the pemigatanib tablets have shrunk the tumour to 3.3 cms. It was originally 6.3 cms last May when all this started. We were told that it could still carry on shrinking and as long as the tumour isn't growing he can stay on the tablets. When it starts growing again there is a newish treatment at Oxford called steriotatic radiotherapy which can also stops it growing. I did ask the oncologist about immunotherapy but he said that was usually given with the chemotherapy, so I don't know whether it's worthwhile you asking. It might be for other cancers though. There was also dnother treatment that we were advised about SIRT. Which they do at Manchester Christie. We went there to see a specialist, however, there is no real proof it works and it is not approved by the NHS so would cost us £20,000. If we went down this route later on I would need to do lots more research and save the pennies. Hope this helps. 

That’s wonderful news! I’m so pleased to hear! 
Long may the shrinkage continue!

Hope you are both able to enjoy the lovely weather we’ve been having!

All the best,

Andy