A forum for advanced pancreatic cancer issues

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kimmac
Posts: 4
Joined: Wed Jul 04, 2018 3:22 pm

Diagnosed too late for treatment

Postby kimmac » Sat Jul 07, 2018 8:59 am

Hi All this is my first post. My husband was diagnosed with a 5 cm cancerous tumour on the head of his pancreas in April. The tumour was not operable due to size and location as was sitting on major blood vessels. By his 2nd oncologist appointment in May he had already deteriorated noticeably, had developed jaundice and the tumour had more than doubled in size as well as spread to his lymph glands. He was told that he was too weak for chemo and was then referred to have a stent put in to ease his liver however ended up in hospital for 3 weeks after as he developed an infection which turned to sepsis. He is also anemic, has had 2 blood transfusions and an iron transfusion so far, and has fluid build up in his stomach (ascites) and has had his stomach drained twice, 9.5 litres was drained the second time. He has since moved to a hospice for pain and symptom control and was told this week that he is not a candidate for chemo and that there is nothing more that can be done for him. This has been such a shock and incredibly hard for us as a family. He is only 44 with 2 kids (11 and 14). Has anyone been in a similar situation that can give any advice or steer me in the direction of any other treatments we could consider? I am not ready to give up yet! Thank you!

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diagnosed too late for treatment

Postby Veema » Sat Jul 07, 2018 4:36 pm

Hi, and welcome...it's a truly awful disease and often not found until it has reached it's critical mass.

Unfortunately, it does sound as though there's not a lot that can be done, but please give the nurses a ring and they will be able to point you in the right direction if there is something that can be done.

What you are describing is pretty much how it was with my husband towards the end of his life. The fluid keeps coming back and each time it's drained, there is always the risk of infection (it was sepsis that my husband actually died of in the end, following a drain procedure).

44 is no age at all...and having children so young makes it so much worse. How have you approached it with them? My daughter was 8 when my husband was diagnosed and 10 when he died. She's has coped remarkably well (my dad also died 10 months after my husband of liver cancer and she's coped with that too). Be as honest with them as you can without scaring them. I would avoid giving them false hope.

Spend as much time with him now as you can...make the most of every day. The hospice is the best place for him to be. My husband wanted to die at home, but ended up in hospital and actually died there...it's been better for my daughter that it happened that way as she doesn't have that horrible feeling of him having died at home and all the feelings associated with that. It will also enable you to be his wife rather than his carer.

I'm sorry I can't give you anything more positive...there's every chance he might rally round for a bit, it's not unheard of, but I do think you should prepare yourself.

Much love...please keep us posted if you can.

Vx

kimmac
Posts: 4
Joined: Wed Jul 04, 2018 3:22 pm

Re: Diagnosed too late for treatment

Postby kimmac » Sun Jul 08, 2018 1:22 pm

Hi V and thank you for your response. Sorry to hear about what your husband went through. Really is a horrible disease!

I will contact the nurses during the course of next week.

We have been open and honest with the kids and I have arranged counselling for them through the hospice.

Looks like my hubby will be needing a permanent drain as his stomach is very swollen and uncomfortable again.

I will post an update once I have any.
K xxx

PCUK Nurse Dianne
Posts: 271
Joined: Tue Aug 14, 2012 3:29 pm

Re: Diagnosed too late for treatment

Postby PCUK Nurse Dianne » Tue Jul 10, 2018 3:52 pm

Dear Kimmac,

Our heart goes out to you and the difficult journey you face. I am sure you have found an 'inner strength' in coping with all you have and wonder where you find the reserves at such a time.

You will find great support and encouragement from the amazing 'family' here, and you know to touch base with the nurses as you need.

We are all thinking of you in days ahead and reach out as often as you may need.

Dianne
Pancreatic Cancer Specialist Nurse

toodotty
Posts: 85
Joined: Sat Jun 09, 2018 4:17 pm

Re: Diagnosed too late for treatment

Postby toodotty » Wed Jul 11, 2018 5:06 pm

Hi kimmac,
I am so sorry to hear your terrible news. I too was diagnosed with S4 PC at the beginning of April, and I had to battle and complain and write letters to finally get treatment. Like your husband I deteriorated really quickly, by the time I got my chemo (it was brought forward by 2 weeks), I was also jaundiced and quite unwell. I too have had to have a stent fitted, I thought I was going to die during the procedure, but that is another hideous story.
I think if I had not started treatment when I did, another two weeks would have probably finished me off. I am totally dumbfounded by the complete lack of urgency given to the treatment of PC patients given that it is well known how aggressive this cancer is.
My heart goes out to you and your lovely family, I can only cry when I think of the injustice of it all.

toodotty,

xx

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Diagnosed too late for treatment

Postby Proud Wife » Thu Jul 12, 2018 5:56 pm

I wish I didn't have to welcome you to this forum Kimmac.

I am so sorry to hear your husband has been diagnosed with this vile disease at such a young age. There are no words....I can but send you virtual hugs xxx

kimmac
Posts: 4
Joined: Wed Jul 04, 2018 3:22 pm

Re: Diagnosed too late for treatment

Postby kimmac » Sat Jul 14, 2018 1:54 pm

Thank you all for your responses to my post. Hubby has now had the permanent drain put in and had a further 7 litres of fluid drained from his stomach yesterday. We are hoping that he will be well enough to go home soon and at least spend the summer holidays at home with the kids and I. Will keep you all updated when I can. @toodotty my thoughts and prayers are with you during this difficult time. xxx

kate2101
Posts: 37
Joined: Fri Jun 15, 2018 4:20 pm

Re: Diagnosed too late for treatment

Postby kate2101 » Sat Jul 14, 2018 2:14 pm

Hi,

Words cannot express how cruel this disease is. My heart goes out to you your family and hope your husband is home soon xx

toodotty
Posts: 85
Joined: Sat Jun 09, 2018 4:17 pm

Re: Diagnosed too late for treatment

Postby toodotty » Sat Jul 14, 2018 6:27 pm

Kimmac,
Make sure you apply for a PIP allowance (like attendance allowance) and a Blue Badge. You husband will be entitled to both and it will help pay if you need extra caring support, though much is provided free. These take a bit of time to get moving but with S4 PC you should get the full allowance, about £150pw. Also check life insurance, some pay out on terminal illness immediately. Aviva were fantastic for me and have given me the reassurance that the family is covered when I am gone, but also paying for some treats for me now, like a cleaner! Also I was able to get my pension scheme to give me an ill-health retirement pension (on accrued pension benefits 38 years out of 40) which is almost a full pension, plus allowed me to take a lump sum out which will also help. These do take a bit of time to organise but there is financial help out there, which for me as one of the two "bread winners" means a big peace of mind as they will be financially secure when I am gone.
The lovely nurses on this site will be able to advise you about PIP if you get stuck (PIP do ask some stupid questions such as "can you navigate yourself?" My husband will argue that I have never been able to navigate myself but cancer has nothing to do with that ....).
I hope that your husband will be well enough to come home soon, hospitals can be exhausting places, but do make sure that you have some down time otherwise you will become fatigued too.
Sending virtual hugs,
toodotty
xxx

kimmac
Posts: 4
Joined: Wed Jul 04, 2018 3:22 pm

Re: Diagnosed too late for treatment

Postby kimmac » Mon Jul 30, 2018 12:39 pm

Hi All a quick update on hubby. He was able to come home from the hospice but it is not quite what he expected as he has been so exhausted that he spends most of the day sleeping. He also has a leak where the stitches were removed after the permanent drain procedure which is not helping. I am worried as he is quite depressed. Any suggestions on how to help with the depression? I was recommended 100% CBD oil which I am giving him although worried that the oil may interfere with his pain meds? @toodotty thanks for the useful information around benefits and life insurance. I will definitely follow up on that.

Sending virtual hugs to all impacted by this terrible disease.
xxx

toodotty
Posts: 85
Joined: Sat Jun 09, 2018 4:17 pm

Re: Diagnosed too late for treatment

Postby toodotty » Mon Jul 30, 2018 3:23 pm

Hi Kimmac,
Glad that your husband is home but not surprised that he is exhausted. My neighbour got sepsis last year, he was a fit and healthy 40 year old hardworking farmer and it nearly killed him, it took a year for him to recover without having to deal with cancer.
Are they offering your husband any cancer treatment to help with his symptoms? It seems impossible that he has been offered nothing especially given his age. You are entitled to a second opinion.
Re offer things to help; I am taking oral vitamin sprays (available from health stores) which are directly absorbed into the bloodstream and tumeric in the same way as this is anti-inflammatory.
Your husband may well be depressed, it is pretty hardcore stuff to take on board and he has been very seriously ill. It is difficult to carry on when all the medics do not give out any HOPE and the first discussion they wish to embark on is "End of Life Care" before they have even discussed treatment. :evil:
Yes most people will die from this hideous disease quite quickly, but 50% of patients are aged 75+ and have multiple medical needs, yet we are all being lumped together as "no-hopers". I do not see why younger people should not have the potential for at least a couple of years, what a huge difference to being told a couple of months.
Keep fighting and do everything you can to boost your husband's strength. Don't forget to ring the lovely nurses here about dealing with depression both his and yours(?), they can offer real practical advice.

toodotty

PCUK Nurse Rachel R
Posts: 18
Joined: Thu Jan 25, 2018 10:52 am

Re: Diagnosed too late for treatment

Postby PCUK Nurse Rachel R » Tue Jul 31, 2018 3:57 pm

Hi Kimmac

Good news that your Husband is now back home. I do really hope that you can have some special time together along with your Children.

In relation to antidepressant medication please don’t hesitate to give us Nurses a call on the support line – our details are in the signature below.

You raise an important point in that yes we would advise anyone that is taking an alternative treatment to discuss taking it with their clinical team as there could be possible interactions either with treatment or other medications that they are already taking.

Please don’t hesitate to call, we are here as you need.

Kindest wishes,

Rachel