I'm so sorry to hear about your mum.  Gosh this disease is truly dreadful and I feel so utterly helpless.  

Thanks for your message - it's really appreciated xx

Hey,

yes I've read that the chemo may in fact make it worse ... but she is so completely determined to do something, anything really that just knowing she could have it kind of kept her hopes alive.  It was touch and go yesterday whether they'd let her have it ... her bilurubin keeps going up and now her ALP is shooting up as well.  Although her ALT is down - not sure why.   .... I'm no doctor and it doesnt make much sense to me, but liver function tests that keep going up doesn't sound great.  Anyway, first round of chemo today and we'll just have to see how she tolerates it.  

I'm so sorry to hear about your husband.  It's as if we have to grieve before we have to grieve.  I hope the stent has given him some relief and you are able to stay strong.

Sending love your way xxx

Hi 

I am not aware of ALP?  The stent sorted out my husband's bilurubin. Is your sister managing to eat? That has been the biggest problem to keep any strength up. My husband has been dreadful and on Creon with every meal which is now only size of an egg cup, he just can't eat. Feels full all the time. He has hated all their recommendations of the high protein/energy drinks  they tried him on so any full fat/full sugar, high protein food is better than nothing. What chemo is she having? Some sessions he felt dreadful the next few days, sometimes only a day. Other times it was just afternoons only. It varies so much with every person.  The hot and cold sensations in the fingertips. On recommendation we bought the white makeup gloves out of Wilko for handling the fridge etc. Once or twice he had the blisters in the mouth as they said you may get but that was in the night and they literally disappeared within a couple of hours

Shout if you need any answers I may have to help. xx

Really sorry to hear about your Mum. It is such a dreadful disease - they call it the silent one as you don't know you have it.  It is just so unfair isn't it. My husband had so many things he planned to do and now is too late.  You just never know.  One chap he did some work for had it years ago and it was picked up on a random blood test and gotten rid of straight away at early stages. I so wish we had that. 

You also message if you want to chat. x

She wasn't aware of the issue with the ALP (alkaline phosphatase - it's a liver enzyme apparently) until yesterday.  She was told her ALT needed to come down and her bilurubin was the other issue.  I don't think she can have a stent because at diagnosis they told her that there wasn't room for one - I think there's a tumour in the way or something.

She's been taking Creon with every meal for the last week or so which I guess is the reason her ALT has come down.  She's not necessarily hungry but she is eating ... she thinks she's eating a lot but she isn't.  She seems to be fine drinking full fat milk and I'm making her eat fresh fruit and vegetables.  I read that kefir was good so I bought a cart load of that as well.  Literally anything we can do we're trying it .... 

She's on Abraxane and Gemcitibine but I think they've reduced the dose after her liver enzyme results. yesterday.  She was going to be given 75% but I wonder if that's been reduced further ....  Is that the same one your husband was on?

Yes its the same, he was on Fulfurnox but only 60% upped to 75% to start with and it didn't work and spread to the liver so was started on the Abraxane & Gemcitibine. They said it came in 4 week cycles. Once a week for 3 weeks then a break on the 4th but on his first cycle - on Week 3 he needed a blood transfusion so that didn't happen - then they still had the week's break so Week 1 started again 2 weeks later. Last week should have been Week 2 but he caught a chest infection. They took his bloods this morning to see if he can have Week 3 tomorrow but he is so weak now I am not under any illusion it will happen. We are waiting for the results now.  

Thanks for your reply, my mum was first diagnosed 2018, she got taken into hospital after a month of back and tummy pain but by now the pain was unbearable and she was jaundice after a scan they discovered a tumour on the head of the pancreas this was may she had a stent fitted and they did biopsys a couple of times which came back non cancerous they discussed with her surgery because it was acting like cancer they said, she had the whipple procedure end sept (dont know why it took them so long so fit her in) surgery was 10 hours long she had half her liver out and apart from her losing a lot of blood it went as planned they tested the tumour once removed and was cancer,  she started chemo December after she recovered from surgery that was for 6 months and told that it was just a precaution as her treatment for cancer was the surgery. Chemo finished last May she rang the bell and was given the all clear, June she had a scan to check she was clear they said there was no recurrence but something on her liver had showed up and they wanted to scan her again they did and again it was flagged up with there words red flag, mum was in a lot of pain from when her chemo finished and was back and forth to the doctors every week they fobbed her off with codine and xrays for arthritis then eventually September they gave her morphine and said she was constipated and that what the pain was,  October she couldn't cope with the pain any longer and got rushed into hospital where the next day she was diagnosed stage 4 terminal we were heartbroken and angry that the doctor's and consultant's didn't do more for her when she'd gone to them so many times,  she was due to start chemo a month later in the November her and my dad renewed there vows after 42 years of marriage the day after she got so poorly and took back into hospital where we were told there was nothing they could do she had only weeks  left, we grived from then on, she got discharged on the 16th November and she passed away 17th December at home peacefully with all her family there.

So sorry to hear your husband is poorly , have hope sending prayers your way. 

Xx

Thank you.  Yes our NHS Hosptial is absolutely appalling. My husband's treatment was dreadful.  The amount of mistakes made, misdiagnosis, incorrect medication. Staff not liaising with each other about what they were doing.  I was told by an actual Oncologist  he was terminal one day then the next day someone else had looked at the scan and they had got it wrong. Then a junior doctor told me it was on his bowels and he had got it wrong.  It just went on and on. Unfortunately we are now at the beginnning of the end but where I work I have Private Medical Insurance so we used that and he has been treated in Birmingham.  The difference money makes for treatment and human behavious is amazing but unfortunately even they aren't miracle workers.

I hope you received postive news from the blood tests and your husband is able to have his chemo today/tomorrow.

My sister isn't having week 2 chemo next week, they're checking her bloods again and if ok she'll have second dose in week 3.    More waiting .....