Hi Gill My mum was diagnosed with bile duct cancer in December 15, she had a Whipple operation in February and they said they'd got all the cancer out! Then in August was diagnosed with secondary liver cancer.we were told that if she could have chemo we were looking at 6-12 months. Now the prognosis has changed and they think she's only got til christmas She is now waiting to see if strong enough for chemo. This is not looking likely! She's so weak. My dad, sister and I are devastated and the same as you... The "how long" is tormenting us all. Mum can't get out of bed as so tired. Hate seeing her like this. Does your husband suffer fatigue too? Any tips? Thinking of you all xx

Hi Gill, we are going through a similary thing with my husband. He was initlally diagnosed with bowel cancer in January and had his operation in February. Back then, they said that the tumour was very large but seemed to have grown locally rather than spread. There were however 3 nodes out of 20 that tested positive and so they gave my husband 12 sessions of Folfox chemo (1 session every 2 weeks).

There was hardly any side effects from the chemo, so much so that we joked it wasn't working! During these 24 weeks, my husband got stronger and stronger, put on weight etc. and so when we went for his CT scan a couple of weeks ago we were quite confident all would be well and we went for the results without too much worry at all. Well, the oncologist then told us that unfortunately the chemo hadn't worked and that the cancer had spread to his liver (4 different areas). We have now been told after the liver team had a look at the CT that the cancer also appears to have spread to the peritoneal area, making it inoperable and incurable and, same as you, that he would have more chemo. He said that normally, they would give a 2 years prognosis, but given the Folfox didn't work and how much it has spread in the past 5 months it would more likely be 1 year, or less... 

We are in total shock as 3 weeks ago I honestly thought he'd be discharged, and now, we are instead looking at less than a year prognosis. It is so very hard.

I hope you both find strenght in each other.

I'm so sorry to hear about your mum. I know that no doctor can really say for sure how long,  but it causes such worry not knowing. I hope you get to Christmas and beyond. My husband doesn't suffer too much from fatigue and rarely sleeps through the day. He does take steroids though, which keep him awake. He gets tired spells and sometimes takes time out but he seems to power on most days despite the high dosage of slow release that he takes - 180mg twice daily. Does your mum take any steroids? Even as low a dose as 0.5mg dexametosone might help with her fatigue. 

Thank you for sharing, I really understand your pain and upset. The chemo gives you such hope doesn't it? And you have your routine, you go every fortnight and you feel like something's being done to stop the cancer and give you light at the end of it. To be then told it hasn't worked is devastating, I know. And the shortened prognosis is just a huge blow. I'm someone who needs to know everything, every bit of information - the uncertainty drives me mad. I hate not knowing.  My husband would be happy not to know but let's me ask anyway. I think the consultant knows now though that he has to tell me everything. 3 months after the initial diagnosis meeting it was dropped into conversation that the original scan showed cancer in the some lymph nodes in the peritoneum - we weren't told that initially. Not that it made any difference to the treatment plan but I'd have just liked to have known.  I hope you're at that point now, where you're able to just deal with every day that comes. You hit periods of bad news, but very quickly it becomes the new norm and you just get on with it. Scary really.  Have they offered your husband a second form of chemo? 

I hope you also can find strength in each other, we certainly do xx

Hi Gill,

My now husband was diagnosed with stage 4 pancreatic cancer in March this year a week before his 50th birthday. His has also mastisted to his liver.   

He had gemcitabine combined with abraxine which is available in wales but due to be stopped we were told.   This combination made him extremely sick & he went down hill.  His scan showed that the tumour on the liver had shrunk a little but the one on the pancreas was still growing.  His oncologist changed his chemo to folforinox & he seems to be managing this chemo slightly better.  He has the dreaded scan on 10th November.

We can totally relate to your fears & concerns.  We have been together 16 years with a son of 11.  We got married the day before his first chemo session.

Mark lost his mother to the same cancer 15 years ago & fears that he has passed the gene on to our son.   His siblings have had ct scans which are clear & they are having genetic testing.

Marks pain seems to be under control with MST & sevrydol.

I can't work, sleep & am barely functioning as I imagine you are, anyway sorry if I'm babbling on but this is our journey so far.

Take care, claire

Gildo I am going thru the same thing. My husband was diagnosed on July 17th of this year. He refused any treatment. They gave him up to 6 months. He is not in hardly any pain. He hurts in his neck and Knee. Other then that no pain. He has no problems eating and has not lost any weight. But like you the not knowing is so hard, He is in denial and we don't talk about  it so it makes it harder for me.  Please keep me updated. We will keep you and  you and your family in our prayers.

Hi my mum unfortunately got worse at the weekend and passed away on Sunday night. I'm absolutely devastated and feel so robbed of time!

Soo sorry, my thoughts are with you xx

Hi my husband at 57yrs was diagnosed with pancreatic cancer  at the top of the pancreas so was operable, he had the whipped surgery on 11th July 19 and was a success, out of 29 removed lymph nodes 5 were infected so he was given a full round of 12 cycles of forfirinox chemo every 2 wks for 6 months.  His last  chemo was on 9 th March and was due to have radiotherapy straight after but was put on hold due to the covid 19,  because it's now been 11 months since his whipped surgery they said they may not go ahead with the radio as normally when given together is normally within the first 6 months so he may not benefit from it.  during the last 4 wks he's been in

lots of pain all around his scar from sides and round his back. He's convinced it's come back and altho I'm very positive I do hope it hasn't , I just reassure him it's where he's been working in the garden. He's having a scan today as was supposed to be nxt wk but because he's in so much pain, I do hope he's wrong and it hasn't come back!!  Everything is riding on this scan as to what nxt steps they are going to take in terms of treatment