A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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patrigib
Posts: 42
Joined: Sat Mar 05, 2016 7:53 pm

stage 4 long time survival without operation

Postby patrigib » Thu Jul 07, 2016 2:03 pm

My husband was diagnosed with pancreatic cancer 3rd Sept 2014. Attemped wipple stopped due to 2 liver mets. Life expectancy was one year.
Had folfirinox, stable pancreas tumor and mets. Was on 5 fu maintenance. Mets recurence April 2016, back on folfiri. Last MRI ans scan shows stable disease ( end of June 2016). My husband is doing well, even if he asked to have chemo every 3 weeks now instead of everey 2 weeks to have more time feeling ok. He needs to have a short nap and feels easily tired but leading a normal live. He is 73 years old.
Anyone with similar experience? What to expect?

Kevin
Posts: 11
Joined: Fri Apr 01, 2016 12:20 pm

Re: stage 4 long time survival without operation

Postby Kevin » Thu Jul 07, 2016 4:48 pm

Hi Patrigib.
Thank you for sharing this with us. It gives real hope for those of us who are dealing with this awful disease. Sorry I can't answer your question directly as I'm not in the same situation. I'm very lucky. 20 years younger, had successful whipple in 2015, but local recurrence 11 months later in April 16. I was put on Folfirinox in May but have not tolerated it (severe fatigue) and it is due to be changed to Folfiri next week prior to me having Nanaoknife in 4 weeks time. So very different, but your story really helps. It just shows how everyone responds differently, but also how we shouldn't take too much notice of statistics. They are OK for the medics to consider appropriate treatments but as you have shown lots of people defy them. Great story and all the very best to you and your husband. Regards Kevin

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: stage 4 long time survival without operation

Postby Dandygal76 » Thu Jul 07, 2016 6:01 pm

Wow Patrigib, that is so great and really does give everyone so much hope. Welcome to the forum where you will find a lot of experience and knowledge... not that you need any right now because your husband is doing so great. I think my dad would never have got this far on chemo without the PCUK nurses and everyone on here. I don't think anyone knows what to expect to be honest, every story I have read is different and have their own twists and turns. Long may the stability continue. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: stage 4 long time survival without operation

Postby Wife&Mum » Fri Jul 08, 2016 12:32 pm

One thing that unites all the patients and their loved ones here is the uncertain and roller-coaster nature of PC. It's so hard!

My advice is to get as much info as you can from the professionals about the likely course of the disease and prepare for the worst possible scenario but hope for the best one. Try to make the most of every day, and don't forget to look after yourself!

There will always be people here who understand what you are going through as they have been through or are going through similar. I hope it helps you as much as it's helped me.

W&M xx

patrigib
Posts: 42
Joined: Sat Mar 05, 2016 7:53 pm

Re: stage 4 long time survival without operation

Postby patrigib » Fri Jul 08, 2016 8:42 pm

Thanks all of you. He knows, as his doctor told him several time, he is above average, but even if he is doing weel, he gets tired of the chemo, and of being tired.
He doesn't want any councelling.
Anyway, he was given less than a year in Sept 2014, and on the 27th july we'll have one week in Greece ( from Belgium).
Hope this will help;
Anyone with similar experience?

patrigib
Posts: 42
Joined: Sat Mar 05, 2016 7:53 pm

Re: stage 4 long time survival without operation

Postby patrigib » Fri Jul 08, 2016 8:46 pm

Kevin,
Hope this will help you. Folfirinox was hard on my husband too. 5 Fu maintenance more or less ok, now foliri. Not so much more fatigue but bowel issues and cramping, and some belly pain. Anyway, his mets and CA 19 are stable ( 31).
Courage! ( as we say in French)

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: stage 4 long time survival without operation

Postby Bowie » Fri Jul 08, 2016 10:47 pm

Hello, I haven't posted for ages, various reasons including forgetting password and then my requests unfortunately went into PCUKs trash. Anyway I'm back and although I was too sad to post for a bit, hearing about Steve and Mark really affected us badly as both had given excellent advice; along with Leila, we will forever be in her debt for suggesting successfully how James could solve his diarrhoea and Sandra and loads more.

Anyway James was diagnosed March 2014, with stage 4, already in his lungs and adrenal gland on diagnosis and given 12-26 weeks. He had Ambraxane and Gemcitibine, all good and keeping disease stable. Then and now he's on capcitibibe. Apart from diarrhoea, that none of the professional could help with, Leila researching for her father found out about SIBO and after seeing a gastroenterologist, James was given antibiotics that he still takes everyday and something for bile absorption and gained the 2.5 stones he had lost. He has remained really well throughout. He's build an extension, a shed, taken down a garage and loads of gardening. He did get pneumonia and was in hospital for a few days, the only time since he was diagnosed. We're been on 6 holidays, 5 abroad and generally doing well. Macmillan have been hopeless, the only thing they wanted to discuss, in a very twee way was dying and if he had listened to them and the professional he would have wasted away as none took his diarrhoea seriously and I'm absolutely sure that would have killed him. He's been fortunate never to have any pain and I so hope that will continue.

He did take to his bed a few weeks ago and the medical profession, all very kind, but again told me he only had a few weeks, and to give up work and get a bed downstairs etc. James was having none of this and is now back to normal, well normal for us. He's 72 now and does have a nap each afternoon, but most days has the dinner ready for me, when I get back from work and he manages pops out for a few pints.

So all in all OK, considering this black cloud we are living under and without the personal experiences on this site, we would have been lost and both think would probably never have made it this far. The clinicians are very kind and when asked for something give it willingly, but we get the impression that James was and still is a dead man walking in their eyes and so it does seem it's down to us. I will write to the Health Secretary one day, setting out what we think can help people and that includes having a case worker, not necessarily medically trained, but someone who will pursue every avenue with tenacity to get the help and support each individual with cancer deserves. Sadly our experiences and those of others we have met demonstrate that at the moment in the UK this is sadly lacking.

My thoughts are with everyone struggling with this evil disease and often having to fight the system too. Fiona X

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: stage 4 long time survival without operation

Postby Didge » Sat Jul 09, 2016 12:44 am

Fiona. Fantastic to hear from you and glad James is doing so well! I do agree with the dead man walking attitude. I have seen that for myself when things take a turn for the worse. But often it is just another sneaky symptom and not 'the end is nigh'. Long may you continue xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: stage 4 long time survival without operation

Postby Wife&Mum » Sat Jul 09, 2016 12:51 pm

Hi Fiona

I think this may be the first time we have 'spoken' tho I've been posting here for the past 5 months. Good to 'meet' you and I hope James continues on his present path for a long time to come!
You've raised several points that I've been mulling over since my husband's diagnosis in May 2015. I wholeheartedly agree with you and Didge, that sadly there's a "dead man walking/nihilistic" attitude amongst too many health care professionals dealing with PC. My husband and I have certainly experienced this directly, which is why we've twice sought a second opinion (on the NHS) and wouldn't hesitate to do that again. I believe part of the problem is that the medics don't keep up with the medical literature that increasingly points to the success of treatments such as Folfirinox and Gem+Abraxane in improving progression-free and overall survival times. Tragic to think that lives could be lost prematurely due to misconceptions about PC by healthcare workers in the UK.

I love your idea of a case worker. I suppose for now it's meant to be the hospital specialist nurse. But ours has been off sick for most of the year and her covers clearly haven't had enough time for us (not their fault). And who is meant to champion the people outside the NHS hospital system? GPs just don't have the specialist knowledge that PC patients need.
On our particular PC journey, the only professionals consistently 'there' for us have been the PCUK nurses, who I can't thank enough. May the funds keep pouring in so that you can continue doing your best for all PC patients who can't find the necessary support and info elsewhere.

Kevin
Posts: 11
Joined: Fri Apr 01, 2016 12:20 pm

Re: stage 4 long time survival without operation

Postby Kevin » Sat Jul 09, 2016 3:38 pm

Hi Patrigib. Thank you for the ‘heads up’ regarding Folfiri. I will speak to the chemo team about supplementary medication when I switch to it on Tuesday. I fully understand your husbands frustration with fatigue. It is the one thing that has severely impacted me since surgery. If you didn't know I had PC you would think I am fit and healthy to look at. However fatigue wipes me out everyday and has prevented me getting back to work full time and it's stopped me even having a day out for over a year. So yes, you certainly get tired of being tired. It's great that your husband can carry on as normal otherwise. Long may it continue. / Kevin

Marmalade

Re: stage 4 long time survival without operation

Postby Marmalade » Sat Jul 09, 2016 5:07 pm

Some wonderful posts on this thread which I can empathise with and hopefully learn from. Fiona is absolutely right and I concur with her feelings about some medical professionals. I wonder sometimes if anyone reads the notes before they speak to you but that's another story. It is so heartening to see that so many are managing to have a good quality of life. Long may it continue!

patrigib
Posts: 42
Joined: Sat Mar 05, 2016 7:53 pm

Re: stage 4 long time survival without operation

Postby patrigib » Wed Sep 28, 2016 2:55 pm

Update on my husband. Got his MRI and Scan results this morning: small shrinkage on liver mets ( from 24mm to 21, another from 20mm to 16).

Going on with FOLFIRI every 3 weeks. Hi is now at 25 months post diagnosis and still doing well, even if he needs a short nap in the afternoon.

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: stage 4 long time survival without operation

Postby Proud Wife » Wed Sep 28, 2016 3:40 pm

Absolutely brilliant. Marvellous. Your latest post will certainly give encouragement to newbies. Even I need a nap in the afternoon and I'm a good 20 years younger!!!!

Take care xx

patrigib
Posts: 42
Joined: Sat Mar 05, 2016 7:53 pm

Re: stage 4 long time survival without operation

Postby patrigib » Wed Sep 28, 2016 8:42 pm

That's what I keep telling him but he is convinced he is still 35 year old :)

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: stage 4 long time survival without operation

Postby Ruthus » Thu Sep 29, 2016 9:43 pm

Great news Patrigib and always fantastic to hear stories like this. Lets hope your husbands good response continues.

Ruth x