My husband is starting this same chemo next week. Fingers crossed after hearing about your Mum. Thank you x

How is everyone doing?  My gorgeous sister was diagnosed with Pancreatic cancer on 10th Feb.  I still can't believe it.  We thought she had a virus and would come home with antibiotics.  It's metastasized to her liver with multiple tumours and so prognosis isn't good.  She's started on chemotherapy today but is starting to show the early signs of jaundice so I find myself bursting into tears still fairly regularly.  She's 53.  

Sending love to everyone here 

xxx

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’m really sorry to hear you lost your mum. I just lost my dad to pancreatic cancer 31st January. Like yourselves dad went hospital with abdominal pains with fluid build up around his stomach (which was Ascites) with weight loss and was sent home with diagnosis “constipation”. He came home suffered another 2 weeks and had to call an ambulance which finally lead to him being admitted they done tests and scans which took 3 weeks and was diagnosed with end stages of pancreatic cancer. He died 2 weeks later. 

None of us expected it to turn out like this not even my dad. I really miss him. My mum and dad had been married for 51 years they were soul mates. My dad was my everything. 

I know you know how I feel as you are going through the same. You feel robbed and angry. 

I hope you have support around you. Sending you a big hug 

char xx

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 .....  

Unfortunatly no chemo for my husband, just too poorly. Don't think he will have any more.  Fingers crossed for your sister next week. 

My Dad was a similar tragic tale to many others on here. He was diagnosed with cancer on 20th Novermber 2016 and he died on 12 Dec 2016. He fell ill late September. He had queezy stomach, cold sweats and had no energy. He was told by the GP he had a chest infection. He was then told by the GP he had pneumonia, and after that was told by the same GP he had a partially collapsed lung. He developed shoulder pains also. He was waiting for a specialist hospital appointment after he grew weaker and weaker and began to lose weight when he collapsed in pain and his partner had to call an ambulance for him. They then diagnosed him in hospital with metastatic cancer in his liver, lungs, stomach, adrenal glands, probably originating from the pancreas. He was 68, but he was fit and active. He had just spent the summer building himself a conservatory. We thought the shoulder pain was something to do with him overdoing it physically from the conservatory project. His GP actually said to him when performing tests "we've ruled out cancer". The hospital treatment was poor. He was put on a geriatic ward instead of an oncology ward. He was with men aged 80, 90 etc. who were senile and yelling. He couldn't sleep at night because of the noise they would make, and another patient who was senile would wander over to my dad's bed during the night and begin to mess with his possessions. My Dad would have to tell him to go back to his own bed. We didn't see the oncologist once. We saw one junior doctor, once. My sister and I both lived 125/300 miles away respectively, so while he was ill we weren't there to see how severe his symptoms were. We knew he was ill, but our mom, over the same period was in intensive care with a brain hemmorhage (they divorced in the 90's). We just thought Dad had some sort of chest infection. He was always the healthy one, the one we didn't have to worry about. Our mom pulled through and made a near full recovery (although her personality is a little different now). Dad died in a hospice, with me, my sister and his partner there. He deserved so much more from what should have been his retirement years. He was the most humble, kind man, with a silly and sometimes mischevous sense of humour. He really was a special guy.

Best wishes to anyone else having to deal with this diagnosis.

Hi

It is just a dreadful disease that just goes undetected for so long. 

Following my last post my husband just went downhill so quickly and passed away on 17th March. It is absolutely dreadful but the success rates of curing it are just so low it is unbearable. I have read more about it since he has passed away than when he was here as I couldn't face it so my understanding is better but it certainly doesnt make it any easier. Thank you for you reply.

Hi

It is just a dreadful disease that just goes undetected for so long. 

Following my last post my husband just went downhill so quickly and passed away on 17th March. It is absolutely dreadful but the success rates of curing it are just so low it is unbearable. I have read more about it since he has passed away than when he was here as I couldn't face it so my understanding is better but it certainly doesnt make it any easier. Thank you for you reply.