Dads diagnosis :(

[Katiefaz92]

On 13th March 2016 me and my family were given the devastating news that my dad had pancreatic cancer. He had been going to the doctors since November 2014 with serve stomach pains and he hadn't been to toilet for months. He was told over and over again it was constipation and was given more and more medications. Finally at the end of February he was able to have a CT scan which revealed the tumour in his pancreas- I really am devastated. My dad is only 54 years old, my mum just recently turned 50 and myself and my twin sister are 23 years old and my older sister is 28. We all still live at home and are such a close family. My dad usually very fit, in 2013 he did the London to Paris bike ride, he goes on annual bike rides in Spain every year up the mountains, and I hope this will help him through his treatment. Unfortunately we have been told his cancer had spread to his bones and is at stage 4. An operation has been ruled out due to the tumour being attached to an artery and a vein- there is no cure. Praying for a miracle we asked for a second opinion from a spealised centre hoping they would be able to operate but we were told the same. My dad has just had his first round of chemo last week which he will be having on a weekly basis but we have been told this is only to relieve symptoms and to prolong life. He has been very tired after this but still managed to go to the football match 2 days after to support his local team. We have referred him to see if he is able to have nano knife surgery and are just waiting to hear back. His weight has dropped dramatically and he is finding it hard to eat but doctors has given him some steroids which has helped his appetite come back a little bit. Is there any hope? Is there anything we can do to save my dads life? I've have grown up watching him work 12 hour shifts to provide for me and my family and for him not even to see through to his retirement seems so cruel. If there's any advice anyone could give me would be much appreciated

[Katiefaz92]

Sorry I mean March 2015

[rsk1974]

I can't really offer any advice, just wanted to say, so sorry to hear about your dad and never give up hope, this forum is amazing and supportive too.xx

[Didge]

Katie, I will try to post more later but am rushing to work. I do feel for you as I searched relentlessly when my fella was diagnosed and the news is not cheerful. However, we do have people on here who have got bone mets stable or reduced. It would seem that your dad is on gemcitabine possibly with the addition of abraxane or capecitabine. If he was very fit before he might have been able to have folfirinox. If he is being treated at his local hospital and the specialist hospital only said no to operating, it may be worth asking to be transferred to the specialist hospital for treatment and asking for a second opinion as to chemo, especially as if at some stage they think his current treatment is not helping. I would urge you to ring the nurses here on this site. They are excellent and can advise you. And there is always hope, however dire the news. We do have a survivor on here who is still going after 5 years against all the odds and there are always new trials in the offing. xxx

[Ant11]

Hi Katie, welcome to the place nobody really wants to be but you will find so much help and support from everyone on this site. I would urge you to contact the support nurses Jeni and Dianne who have a wealth of expert knowledge and you can do this either by phone or email. As a family we would not have coped without them. A good idea is to keep a book with things written down daily for example, any pain, how your Dad felt, what he ate etc so you can look back to see any patterns and it will help when you have appointments at the hospital. Also keep a list of questions to ask the doctors. As Didge said there is always hope with new things happening all the time. Keeping your Dad positive and as upbeat as possible is important, although at the moment this may feel an impossible task. My Sister in law Tracy was diagnosed in November 2013, 2 months before her 50th birthday and after 18 months of fobbing off by the hospital and doctors. You can read her real life story and also watch the support video on this site. Keep us posted and never be afraid to ask for help. Love Annette xx

[Katiefaz92]

Thankyou so much for all the messages I do really appreciate it. My dad is currently on 2 types on chemo which he has on a weekly basis (and I believe it's the first two you mentioned). Seems to be doing ok, very tired and last night we noticed his feet were swollen...is this normal? But overall seems to be doing ok- only been sick once. Had a few down days where we have all had a cry to each other I think it's just getting over the shock of it all really. We are being accessed after 3 months of chemo to see how the tumour is reacting to it and fingers crossed this will be good news.

Been reading all the stories on here and pancreatic cancer is heartbreaking. and the message regarding someone who's had the disease for 5 years is very promising! I would love to read Tracy's story but can't see to find it?

Once again thankyou for all your messages xxxx

[Katiefaz92]

Just to confirm hes on abraxane and gemcitabine

[Ant11]

Hi Katie, here is Tracy's story..... http://www.pancreaticcancer.org.uk/information-and-support/real-life-stories/patient-stories/inoperable-pancreatic-cancer/tracy/

I will also send you the link for support video which Dianne one of the support nurses is in too. http://www.pancreaticcancer.org.uk/information-and-support/get-support/support-line/

It is very tough at the start dealing with so many emotions, but I'm sure with the help of everyone on here and great family togetherness you will find the fight and strength. Love Annette xx

[Katiefaz92]

Wow what a strong brave woman!! what vitamins was she taking? Very interested in introducing these to my dads diet! Xx

[Ant11]

Katie, she like others on here is truly amazing. Send a message to the nurses on here and ask them for my private email address, I can then give you help if you need it. Love Annette xx

[Katiefaz92]

How do I contact them Annette? X

[Ant11]

Katie

Email them on support@pancreaticcancer.org.uk and ask to be given my private email address xx

[Bowie]

Katie, I am so sorry to hear your news. My husband was diagnosed with stage 4 with mets to his lungs on 27 March 2014. He was quite well in himself, except for weight loss and was only diagnosed after paying for a battery of tests privately, camera up, down and all sorts. His only symptom was losing weight and diarrhoea for about 4-6 months before. He too is on ambraxane and Gemcitibine, just finished the 11th cycle and except for 1 session of one cycle, hasn't missed any treatments. He had a few weeks off for Christmas and is now on a 4 week break, as we are trying to arrange a holiday, but things aren't going well with that, but that's another story. Anyway, he was 70 on diagnosis and really fit, still working part-time, plus loads of gardening and building an extension, all if which he continued at first whilst undergoing treatment. He has stayed relatively well, except for diarrhoea and getting tired, is out at our local every night for a few drinks before dinner and then cooks dinner, as I'm still working. He drives to his chemo appointments and generally manages to do much of what he did before. We were told he only had 12-26 weeks max, but in fact his secondaries have shrunk and the pancreatic tumour is stable, however, I know from what they're said that this probably won't last so the worry is always there of living on borrowed time. However, they have told us about a another new trial for stage 4 PC that he could go onto once his current drugs are no longer effective, so there is always hope. I know that It is so hard trying to live in the minute having this always hanging over you and before this all happened I couldn't imagine that we would have coped, but we have and we do. We live our lives, we laugh and cry a bit and do the usual stuff with family and friends, the routine, which has now become so very special, because I've understood nothing lasts for ever. As others have said some people do carry on 5 years plus and even those of us without PC have no guarantees, the oncologist have to give the odds based on empirical evidence and that includes all those diagnosed before the latest drugs were out and those already ill with other life limiting diseases so no one really knows everyone is individual. I hope everything goes well for your dad, you and your family. We've taken a lot of comfort and practical help from others on this forum and I hope you can too. Fiona X

[Guest]

Very sorry to read your Dads diagnosis.

I know how much you are hurting right now, and I know how much of a shock it is.

My own Dad was only 61 when diagnosed. Far far too young.

The best advice I can give you, is to read lots on here. You will get no better information. You will read something which doctors or consultants haven't suggested or mentioned to you. Also, do not be scared to question professionals, and to ask questions. Whoever goes with your Dad to appointments, tell them to get a little book. Right down questions, and ask them. Some might not seem keen to answer, it doesn't matter, ask anyway.

My Dad never questioned anything or anyone. His head was too full of the diagnosis. It was my job to question and help him, and I had lots of questions.

Dianne or Jeni on this forum can help you with confidence to speak up. I would never question anyone, as you believe everything professionals say. But reading on here, I got the strength to stand up for Dad.

Leila xx

[Katiefaz92]

Thankyou all for your kind messages and I am thinking of you all and your families at this difficult time.

Dads going for his second round of chemo today and is feeling good about himself which is always nice to see.

Will be taking a book with me everytime we go to see the doctor now-Thankyou. No news yet from the nano knife referral but will keep you updated- sounds promising from what I read online about it.

Katie xxxx

[Sueoliver]

Hi Katie,

I am sorry to hear about your Dad he is very young! Hopefully the chemo will work for him and the fact he is feeling good is positive.

Leila's advice is spot on ask loads of questions, never be afraid to! This forum is great and everyone knowledgeable and helpful.

Look after yourself as well.

Take Care,

Love Sue x