A forum for family, friends and carers of pancreatic cancer patients

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Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Newly Diagnosed

Postby Elaine123 » Fri Dec 09, 2016 8:39 am

Hi everyone my 67yr old husband was diagnosed two weeks ago with PC with liver mets.He was diagnosed because of jaundice which steadily became worse over a two week period until we became so worried that we attended the A&E department of our local hospital . He was admitted that day and had an endescope next day which led to a diagnosis of PC and had a stent inserted to bring down his level of jaundice. We were told that his results would be sent to the pancreatic unit of another hospital who would then discuss any treatment options which could go ahead after the jaundice levels fell. However seven days later we got a phone call to say that he needed a liver biopsy so that the results could be included in the discussion. He was admitted overnight this week for the biopsy which was then carried out however they discovered a blood clot on his lung which they were unable to treat for 24 hours after the biopsy in case of bleeding at the biopsy site. That is where we are at today and are hoping he commences on blood thinners and will be discharged today. Over and above the shock of being told he had PC we are feeling frightened because we are unsure of what will come out of the discussion and whether he will be able to have treatment and what the ongoing plan will be. I came across this site which has been invaluable to me and has given me a glimmer of hope and knowledge about everything. Thank you everyone.

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

Re: Newly Diagnosed

Postby Dandygal76 » Fri Dec 09, 2016 2:00 pm

Elaine... hold onto that hope. If your husband wants to fight this then you need to ride the wave of that hope. When you look at the statistics they are dire but your husband is the right side of the median age for diagnosis. I understand that 10% make it 5 years now and given the mean age of diagnoses is I think 72 there is no reason why your husband should not be in that 10% if he is otherwise healthy. It is such a shocking diagnosis and my heart goes out to you. It is a really scary time but there are several things you can do right now... 1) Look at clinical trials as you may be able to get Abraxane which is not available on the NHS. There are NHS funded trials if you have no money - this bit will probably get deleted and I will get told off but call the LOC (Harley Street) for an outside NHS opinion if you can afford the £400 consultation. They just seem to have access to some more forward thinking resources. This is not PCUK endorsed advice, it is my own personal experience (and that of others) 2) Speak to the Princess Grace about the nanoknife - no firm scientific evidence coming through but anecdotally I see people doing really well (they will ablate the liver lesions as well). This will cost you around £24k though if you nano and ablate.

If there is enough biopsy then you may want to call the Sarah Cannon in London. It is the only place in the UK I have found who will do Genomic testing on the tumour. This is about £1500. However, from what I understand from research is that up to 5% of tumours are genetic and can be treated differently.

Some forms of this cancer though are just nasty and so it is a very personal decision whether to invest funds.

I am an avid PC crusade fighter and my advice is completely biased towards that approach. There is much yin to my yang on here that will hopefully come through from my forum friends. This is a very personal journey (sorry Mo for using that word) and we all have very bitter sweet takes on it all. x

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

Re: Newly Diagnosed

Postby Ruthus » Fri Dec 09, 2016 3:00 pm

Welcome Elaine
I'm so sorry to hear about your husbands diagnosis. I speak as a sufferer from PC (diagnosed November 2015). It's such a huge shock for all the family. It took me some time to process the diagnosis but over the past year I would say myself and my family have reached a new level of normal. I'm lucky to be able to be active and do many things I would normally do in life. I am sure you will find this site invaluable for support and advice. After I was initially diagnosed I looked on the internet and was terrified with what I read. It's been a real roller coaster year for me but if you read my forum thread "mum of 42 diagnosed with inoperable PC" you will see there is hope. You will also find this in reading other stories on the site too.
Dandygal has given some very helpful pointers in her reply.
Love Ruth xx

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

Re: Newly Diagnosed

Postby Dandygal76 » Fri Dec 09, 2016 3:38 pm

I would also like to add.. that my advice is not about that you will not get a great service on the NHS. You may be near a pancreatic cancer specialist centre that are brilliant and really forward thinking. The thing I find empowers people though is to gain as much knowledge as you can early on (including the option of palliative or no treatment) and this means perhaps looking at the private consultations and doing your own research. What approach you take to this really does differ from case to case. But with increased knowledge you will feel so much more empowered in your decision making. x

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Fri Dec 09, 2016 6:00 pm

Sorry to hear of your husband's diagnosis, it's a scary time. We had a good couple of years and my husband tolerated chemo very well.

Lots of luck with it...and we're all here for you.

Vx

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

Re: Newly Diagnosed

Postby Wife&Mum » Fri Dec 09, 2016 7:02 pm

Welcome from me too Elaine but I'm very sorry to hear about your husband's diagnosis. As you've already discovered, this forum is a great resource for finding out stuff about PC, and the people here are lovely too, so you've come to the right place!

I do hope that you get your husband home tonight and that you get a good treatment plan in place very soon.

W&M xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Dec 10, 2016 8:09 am

Thank you to everyone for their kind replies it's comforting being in touch with people who are sadly fighting the same battle as Pete and I are right now. He was discharged last night and has to have Fragmin injections one a day for 6 months. We were told he was being discharged at 12 and it was after 6 pm before the pharmacy sent up the injections and medication.....he was feeling so miserable and looked so poorly I think partly at the news that he had something else to cope with. By the time he was finally let go plus the one hour journey home he was exhausted. Once again thank you for your kind replies.

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Sat Dec 10, 2016 9:46 pm

Hi Elaine,

Welcome. So sorry you and Pete are having to cope with the devastating news. We often say that this is a "roller coaster" because it is so unpredictable and completely unique to the individual. Please don't be too alarmed about Pete's exhaustion - its a huge thing to have to compute and hospitals are very noisy, disruptive and tiring so being at home having some rest is bound to help.

I am sure you and the family are still in shock and trying to comprehend what this diagnosis means for you all. It is true that PC is currently a life limiting disease, but all our lives are limited and no one can say where that limit is! There are some fantastic survival stories (Ruth is an inspiration) on here to give you hope and encouragement. The younger and fitter someone is at the outset makes a difference as does keeping up good nutrition during chemo. Believe it or not, 67 is still young in todays reckoning so you already have a good starting point. Surgery, intervention radiology and chemo are all possibilities to extend life if he is strong enough and that is what Pete wants.

The urge to research and read everything on the web is very tempting and some would say you should do it but you do need to be a little wary as the internet is not a fully comprehensive resource, anyone can post on it and some people give advice without any medical training in how to interpret the data or knowledge of anyone's medical history. The net and this forum are just two of the many resources available and I would urge you to discuss any questions you have with your GP or hospital consultant in the first instance or contact the nurses on here.

I know you may not want to think about it yet but it is also important to understand what end of life care is, how to access it and what the options are. Not everyone is a suitable candidate for chemo or surgery and even if they are they may feel, as time goes on that it is quality they want not quantity. Knowing what it could be like can go along way to allaying fears.

Lastly, do contact Macmillan finance to find out what benefits you can hook into straight away. Whatever happens you are going to be spending time at hospitals and caring for Pete when he is having a bad day. Pete being 67 is entitled to full rate attendance allowance from the date of claim, or diagnosis if Macmillan do it (£82.30) and you may also be entitled to a carers allowance if you are under 65, the rate for carers allowance may vary but neither the attendance allowance nor the lower rate carers allowance, is means tested so every reason to claim. Macmillan will do all the paperwork for you and the hospital specialist nurse or GP will send the entitlement form DS1500 direct to them in most cases.

There is a great deal to take in at this stage but you can come back to these posts when you feel like it. I hope that you and Pete are able to get some rest. I will be thinking of you as will all those on the forum and we will be here in the wings if and when you need us.

Much love, Marmalade xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Mon Dec 12, 2016 7:28 am

Thank you so much Marmalade your post put a few things into perspective for me , I am finding the forum a fantastic help because at the minute I find that well meaning others are unaware of what a diagnosis means for Pete and I can nip on here to find real support . Thank you so much. X

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Mon Dec 12, 2016 9:43 pm

Hi Elaine, so pleased you finding being with us helpful. Only when it happens to you do you understand how important it is to have a safe and understanding place to escape to or seek comfort in and i hope you feel that you can share the peaks and troughs of your story here in confidence.

Much love

M x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Dec 17, 2016 6:42 am

Hi everyone the MDT meeting to discuss Pete was today and we got a phone call to say that his liver biopsy was cancerous and that he would get an appointment to discuss chemo with the oncologist within next three weeks. As you can imagine this immediately dumped him further down . In the past three weeks he has had a diagnosis of pancreatic cancer then the next week a blood clot on the lung and now cancer in his liver. He has been very quiet since the phone call and lying down for a sleep. I just feel so scared that the more things that are piled onto him may affect his determination to fight this. I know you all understand my fears. Thank to this forum for allowing me an outlet for my worries and fears.
Elaine

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Dec 17, 2016 6:45 am

Hi Elaine, the hardest thing in the world is to accept a life limiting prognosis.

The instinct is to fight but sometimes fighting is not the answer… You will need a little time to let things sink in, both have a good cry or two or three and gently talk about where you go from here. The oncologist can talk about what if anything he can do but you can also chat to the GP about possibilities and referral to the palliative care team or local hospice, they are experts in this and don't just write you off. They can help with talking to Pete about the diagnosis, his feelings, address his questions and yours in a non medical situation and so on and advise on symptom control even if that involves chemo and the side effects as well as diet. There are options to extend life as far as possible but there are also options that are all about comfort and pain free quality of life. This is really big so don't expect to be able to make snap decisions.

Pete has this terrible disease so he will feel exhausted, depressed (he can have something for that) pain maybe and a myriad of other symptoms so he will want to sleep and may not want to talk about it for a while. It makes it very hard for you which is why we are all here. Louis and I agreed to talk about it once, a few days after the diagnosis take all the hard decisions and then not talk about it again.

Please don't think that I am being dismissive, truly I'm not. I feel the pain with you, all I can say is stay close and rest and hug and comfort each other. And keep posting, anything that makes you feel better.

Marmalade xx
Marmalade

Posts: 332
Joined: Tue Mar 22, 2016 7:30 pm
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Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Dec 17, 2016 6:57 am

Postby Veema » Thu Dec 15, 2016 7:04 pm

I think you need to sit down with the oncologist and find out what, if any, life extension chemo will give. In our case, I think it gave us a year or so. Nige died just under 2 years from diagnosis, but it was 9 months since we were told it had spread outside of the pancreas and just a very short time from when it had spread to his lungs, liver and abdominal wall. Having said that, there are those on here with mets who's disease is being kept at bay with treatment.

I totally agree with Marmalade regarding the palliative care team...we weren't offered this until right at the end and it helped greatly, but it could have helped a whole lot more if we'd asked for it or been offered it earlier. You will also be entitled to benefits dependent on his age (sorry, can't remember if you've mentioned in your other thread how old he is)...we could have had PIP payments for most of the time, but we only found out about it at the end...things like a blue badge too...you might not feel like you need one, but it does help to have free accessible parking when you attend appointments and such. Our hospice offered alternative therapies, massage, reflexology etc, but it was too late for us.

Lots of love and strength...its bloody awful I know. This is the first christmas in two years\az we are facing without a new diagnosis...just facing it without Nige.

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Dec 17, 2016 6:59 am

Hi Elaine, I am not going to go over too much old ground that I have already provided in an avalanche on your previous thread but all is not hopeless. I recall your husband being I think 67 and he could respond very well to treatment or not - you do not know until you try and if you want to try then you have to hold onto that hope that your hubby will be lucky. My dad was diagnosed with mets to his liver and his bone in January this year and we are looking forward to a nice Christmas right now around his treatment and we never thought we would be where we are today - he was told 6 months.

The main thing I say to people in your situation is don't look into the abyss of the unknown. If there is ever a time you need to be grounded in your decision making it is now (easier said than done I know).

It is 'life limiting' but it is not hopeless. A very stupidly small percentage recover, 10% I am told can make it 5 years and things are improving. There are positive stories out there. So yes, the consideration of no treatment / palliative treatment is a big and legitimate option but if your husband is not ready for that then fighting back and trying to stick two fingers up at is maybe a less less likely outcome but it is still a legitimate option and one we are, with my 64 year old dad, pursuing with a good quality of life right now.

It may feel like it right now but you are not powerless and you have choices. It is just a steep learning curve to try and make the most informed decisions around this.

xxx

xx
Dandygal76

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Dec 17, 2016 7:06 am

Thank you to everyone for the very welcome replies to my post.....it helps so much to speak to people who totally understand this terrible illness and are willing to share their story.
Elaine
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