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

I am so very sorry to hear this, my mum passed away 17th December aged 58 this this awful disease,  she'd only been diagnosed in the October,  things quickly went down hill and the week before she was due to start chemo she was  very jaundice and had a high temp, she was rused into hospital where we were told the cancer had spread every where and we had weeks left with her, the jaundice was getting worse due to a blockage that could not be operated on as she was so poorly she wouldn't of survived if they had fitted a stent. Pancreatic cancer is just awful it took my mum so quickly.  Sending lots of love and strength through this difficult time. Please message if you need a chat. Xx

Hi 

So so sorry to hear about your sister.  It is a dreadful disease , my husband is 58 and now not good as not responded to chemo - it made him ill. He had no signs at all until last May and then overnight something was wrong. Not diagnosed until July where it had progressed rapidly.  Jaundice was completely fixed with my husband last September. They put a stent in to clear the tubes and he hasn't had jaundice since. I cry all the time - I have no answers for that unfortunately. I hope she responds to chemo well. Lots and lots of people do and you have to have hope.  I know my case isn't a good example but you must keep hoping. 

xxx

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?

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.  

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.