Brother with inoperable pancreatic cancer

[Bryansie]

Hi,

I am sure my posting is like everyones on this forum.

My brother told me he had a pain in his stomach 8 weeks ago and went to his DR's, he was sent away twice being told to take parecetamol,two weeks later he was rushed in to hospital with D.V.T on his right leg, the hospital did some tests and said they had found many small nodules in his stomach and a 3cm shadow on his liver, they could not do the biopsy on his liver for 3 days as they had given him warfarin. He had the biopsy and a week later they rang him with good news, it was not cancerous,sadly that was short lived as 2 days later he was taken back into hospital with D.V.T in his left leg, they could not understand why as he was on warfarin, when they did a biopsy on his stomach they found that the not so big nodules 2 weeks ago had grown very quickly, another 2 days later, after many more tests he was told it was terminal and nothing they could do.

I am struggling, as is he, to understand how or why they would give such promising news and then in the next breath come back with devastating news.

He is on the highest medicine for DVT, it is not warfarin,he is sitting at home unable to do anything because of the dvt, I feel he has no support and cannot understand why they are not doing anything else, they did offer him chemo, but when he asked would it help take the pain away they basicaly said no.

I would really appreciate if anyone had any ideas as to what options he has, he was 56 last Thursday.

Thank you for reading this.

[Didge]

This cancer can be very difficult to diagnose and sometimes tumours have parts which are non-malignant and parts which are which means biopsies can sometimes mislead. I also know that pancreatic cancer can sometimes cause blood clots which seems to have happened in your brother's case. Chemo can sometimes help with pain if it shrinks a tumour which is causing pain. If he is young and fit which 56 would be considered to be, they will consider chemo, probably folfirinox if they think he can take it. My bf tolerated that much better than the gemcitabine which is also sometimes offered in conjunction now with abraxane as a first treatment. Good luck and I hope your brother gets some treatment soon. There are also some alternatives he could research but this is very much an individual choice. Please also remember that you can ask for a second opinion maybe at one of the specialist hospitals on this site if he is not already at one - plus ring the nurses - they are very helpful and give good advice.

[Sueoliver]

Hi I am sorry about your brothers diagnosis! I hope your brother gets some treatment very soon. Do you have an oncologist? The nurses on this forum would be able to answer your questions try and ring them. I hope he gets a treatment plan in place very soon. Sue

[Bryansie]

Thank you Didge/Sue for taking the time, not only to read my post but to reply to it.

That's the thing, he went to a specialist hospital 10 days ago to discuss chemo, he declined the chemo,from what he has told me I feel he was advised that the chemo could possibly drain him leaving him physically worse off then not having it, he was told it is an agressive type and we are looking at weeks rather then months.

I travel upto London to see him every week and see his lovely young life ebbing away.

The only treatment he is receiving is clexane top dose for his DVT,Morphine for pain and paracetamols as and when.

DEVASTATED is an understatement, I have to hold back my tears, he has always been my rock,my hero like everyone on this siteI ask the question why!!!!!

[Didge]

If that is your brother's choice and is backed up by the hospital then I would research some alternative therapies if he would consider them. At least they will not have the weakening side effects. And if he is not interested then all you can do is support him and make sure he is as comfortable as can be. Does he have family living with him? I do feel for you and your brother. My bf is younger than your brother and facing leaving 4 young children. It really is an awful cancer and I can understand your shock at the sudden and devastating diagnosis. We are all here to support you though as best we can. We are all in the same boat.

[Guest]

Sue,

Sorry to read about your lovely brother. Someone else badly treated. Have you asked to see another oncologist? Have you spoken to the nurses on this site?

Surely he would be able to have a gentle chemotherapy?

I would really recommend you speak to the nurses on here. They can help you with what to say to the specialists at the hospital. Like Didge has said, I would really ask for a second opinion here.

Leila xx

[Bryansie]

Thank you leila/Didge/Fifi,

I have just come back from spending 2 days with him, once again we discussed chemo and he has decided NO, I have already discussed alternative therapies with him, at the time he said he would try anything but now I feel he has accepted his outcome and what little energy he has is to enjoy his love of nature.

Thank you

[Sueoliver]

Sue this disease is so awful and I can feel your pain. The support you give your brother is amazing and what he needs. We have to respect these decisions however hard it is for us.

Stay strong. Thinking of you.

Sue x

[Bryansie]

I am trying to stay strong, I leave my brother each week feeling so lost and unable to do anything to help.He told me that the nurses had come round and discussed D.N.R he got upset and said he had decided to sign the dnr form, seeing him get upset puts tears in my eyes I try not to let him see me cry I love him so much.

He and his wife decided to down scale their home and enjoy working less, all this has had to continue as they sold their home before he got ill, he has stayed in two family homes since he got ill as their new home needed work doing to it (5 weeks work) he told me yesterday he does not think he will get to see it, I am so angry, he is the sweetest kindest funniest person I have ever known.

My life will never be the same.

Sorry just needed to get this off my chest.

[sandraW]

Don't worry that is what the forum is here for, PC is such a wicked disease, and always seems to pick the best people, just lets hope your brother gets to spend time in his new home and enjoy it. take care sandrax

[Guest]

I am so sorry to read your latest post.

I cannot imagine what it must feel like for the patient, but to be asked about DNR as well, that is just too much. They asked me that, when my Dad was in hospital. It was the hardest decision of my life, and it completely broke me. I am just grateful that they asked me, rather than my Dad, as it would have destroyed his mind.

Your post is so incredibly sad. It is so devastating to see a loved one so sad.

I wish I could say something to help, but I know that there are no words. I just hope so much, that your lovely brother does get to see his new home.

Sending love and hope.

Leila xx

[Bryansie]

Dear All,

Thank you for taking the time to read my post let alone replying. Leila, I read your post from start to finish when my brother was first diagnosed, selfishly????? because I wanted an idea as to how long he would be with me, strange???????????? or normal!!. I went through so many emotions reading your truly heart felt accounts, the sadness, anger and frustration you were going through but throughout it all you had that determination to do the best for your Dad, it helped me immensely seeing the support you got from other members and the wondeful support you gave back.

Thank you for being there to everyone.

many hugs and love

Sue

[Sueoliver]

Hi Sue,

I really can feel your pain and I understand. PC is just wicked and seems to pick on the loveliest of people. This forum is here for you.

I hope your brother gets to see his new home and enjoy it.

Look after yourself as well. Take care.

Sue xxx

[Didge]

Sue, my fella was asked about DNR when he was admitted on Sunday and it really upset him although he agreed to it before any of his family could get there. He was very ill and the chaplain was called but even so it was this question which really devastated him and he spent the next two days convinced he was about to die. I really don't think they should do this! I agree with Leila that they should ask relatives instead.

[jay]

Sending you a massive hug Sue,Totally agree they shouldn't ask about DNR, they asked Jem and he said Is my life not worth saving ? Breaks my heart every time I think of it.

love jayne

X

[PCUK Nurse Dianne]

Dear all,

Firstly Bryansie, I am sorry to hear of your difficult time and your brother's diagnosis. As we so frequently see the forum family are very supportive to you. As I see there are several posts about the DNR I thought it might be helpful to explain this further and I hope this is easy to understand and does not offend any one, not my intention. I will endeavour to explain in a manner that is easy to understand without hurting any feelings.

We certainly do understand the topic of 'DNR forms' can come across as a very 'devastating and difficult question' and I should say very difficult for any hospital staff to approach too. The reason that this is asked of patients, is that they should have the opportunity to express their wishes very similarly to any treatment options, but ideally this question should be asked when there are family or loved ones in the room to support the patient and ask questions rather than leave the patient with no support at such a vulnerable time.

The reason that this question is asked is for purposes of patient comfort, dignity and quality of life. I will explain what the normal event of a patient passing away in a hospital situation and this may help to understand why this is considered.

In the situation that a patient passes away in a hospital, if there is not a DNR form signed, this means that the patient has to have 'active resuscitation' until such time that a medical professional deems the resuscitation process unsuccessful - in many cases this may be 20-30 minutes, depending upon the individual circumstances. This actually will involve the hospital 'resuscitation team' (several members ie doctors and nurses) attending after an emergency 'cardiac arrest call' is made. This will also involve the patient having CPR (cardiopulmonary resuscitation - chest compressions and airway management) and first line cardiac medications injected for a period of time until it is deemed that the patient is not responding to this active treatment.

In some instances hospital resuscitation is successful, but this depends greatly on the patient and their history (ie what necessitated their admission to hospital in the first instance), many other factors including whether the event was witnessed or patient found to be in a state of 'cardiac arrest' some time after the event. In the less common situation that the patient is successfully resuscitated this would entail a transfer to an intensive care or cardiac care unit for expert management, and this may include insertion of invasive lines, inserting a breathing tube and 'life support management', which is not a pleasant scenario for any patient or certainly family to be placed in.

In circumstances where a patient with a cancer diagnosis has been asked to sign a DNR form this should be discussed so that the patient and their family understand exactly what this means. This would require an explanation about effects of prolonged resuscitation attempts, management afterwards and all that this involves. This conversation should also highlight and reassure patients that they are not being forgotten however their treatment revolves around care, dignity and comfort. All patients and family do have the right to question this decision and all potential outcomes should be discussed. Many patients (both those with cancer and those without) may have strong feelings about dying and being comfortable and at peace at this time. The process of resuscitation is not a peaceful process and can result in complications such a fractured ribs (especially if the patient has had treatments that have affected bone strength - chemotherapy), infections from the line insertion and ongoing complications to name a few.

We do understand how upsetting this can be for both patients and families, and in some instances patients may already have thought about this themselves, although of course they may not have shared their thoughts. From a consent perspective it is the patient's role to consent, unless the situation occurs that the patient is unable to consent from perspective of 'mental capacity' and this becomes the role of the 'next of kin'.

Please do feel free to respond and if any one does wish to discuss further certainly we can do this via the support line by email or phone if that is an option for any of you to pursue.

I do hope this helps with understanding and as I suggested not meant in a manner to upset anyone.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

[Guest]

Hi Dianne,

Although upsetting because of my experience, I am pleased that you have explained this. It was never explained to me. I was ushered into a little room, amd simply asked if I wanted my Dad resuscitated, if and when it happened. I originally said yes, but having thought about the rib breakage, and for the life I would be bringing him back to. At the time Dad was in hospital, he had had a stroke and was 100% not able to speak. I don't think his brain knew he could, as he never tried. Our final moments were cruelly taken away, but my lovely Dad still managed to express his love and that means a lot.

I am grateful for being asked about DNR rather than Dad, hw would not have handled it, but I do wish it was explained to me, how you have written it.

Leila xx

[Bryansie]

My darling brother has taken a turn for the worse, my head is everywhere and what makes it worse I am 120 miles away. Since I left him wednesday he has been in contstant pain, his wife called the nurse,she came round and suggested he went into a Hospice so they can manage his pain, OMG it is real, it really is happening.

[Guest]

Where is your brothers pain? What pain relief is he already taking? Does he have an oncologist? Sorry for the questions, just trying to help. It is a horrible time, but you need to keep your head. He needs you strong.

Leila xx

[Didge]

The stress is enormous when they are in pain but the hospice staff are experts at getting pain under control. I thought I had lost my man a few days a go but he is out of hospital again and the palliative team are involved. Pain management is difficult for him because he has one tumour in particular pressing on nerves but there are so many approaches they can try and with different doses that I am sure they will succeed in getting your brother more comfortable. If they get him pain free he will be able to enjoy some of his time again. I was surprised when my fella said he had as his goal reaching his birthday next week, that the palliative care nurse said she hoped he was setting his goal a bit further than next week! This gave him a boost so don't assume that all is lost at this point. Thinking of you and over the weekend too - it's always difficult I find, over weekends. I hope he can get some specialist care very soon xx

[Bryansie]

Once again a big thanks for your support. I was going up to see my brother today as I really did not think he would be with me on tuesday which is the day that I go to see him, his wife called and said the ambulance crew were impressed as they did not have to carry him to the ambulance, he very slowly made his own way, once at the hospice the nurses set about making him comfortable, they were waiting for the Dr to come and see him, his wife said his whole persona changed once he was in the hospice, like a great weight was lifted, he has told me he does not want to be left on his own in fear of dying on his own, I suppose being in the hospital he has people round him all the time. My emotions were very mixed and I was devastated went I was told he was going into the hospice (as my previous blog stated) but now with what my sister-in-law has told me I feel so releived for him, she encouraged me not to come up today as it was a massive trip for me to get there, 3 hours driving there to stay for 3 hours, then drive 3 hours back, I told her my concerns and she assured me that he was looking and feeling a whole lot better.

I am experiencing emotions that I never knew existed, I am so pleased to hear he is ok and look forward to seeing him Tuesday.

One last thing she did say that the hospice said they would keep him with them until his home was ready for him to move into, no more living in make shift rooms with no personal bits and pieces of his around.

Thank gooodness there are willing and caring people around.

Love and hugs to you all.

[Guest]

Pleased to read that your brother is ok, I don't mean that in a flippant sense.

As I have said before, your posts do sound like my own did. Your brother does remind me of my Dad and some things he used to say.

My Dad never said to me that he never wanted to be left alone for fear of dying alone, but I know that if he could speak, he would have said it to me.

Have they got his pain under control? Hospices aren't like people associate them anymore. They can be just for getting pain under control and for a break or some care, they aren't only where people pass away. I know your brother is probably thinking this.

I really really hope that his home is finished soon so he can see it.

Leila xx

[rsk1974]

Im pleased that he's in a hospice and that they can get him really comfortable and pain free, I always think.there's ideas of what hospices are like and I was devastating when the Dr said to consider it for my dad.But we heard so many positive things and how great and caring they are. I hope your visit Tuesday goes well.

[Bryansie]

My thoughts and wishes to all of my dear Friends on this site.

I have just got back from London, I stayed with my brother all day and night at the hospice, they have put a make shift bed in his room, it was nice as his wife was able to have a break and I spent quality time with him. They are still trying to manage his pain and are starting him on a drug called Fentora, this is in addition to his morphin which they hope he can have in patch form as he so desperately wants to get out of the hospice and move into his new home.

Every week I go I see the tumor getting bigger and bigger, causing him so much pain. Thank goodness for the Hospice and every single person that works there from the Dr's right the way through to the Volunteers offering you a tea/coffee they are all wonderful people who are making his time there as comfortable and as pain free as possible.

Fingers crossed heis only 10/14 days away from moving in.

Love and hugs to each and every one of you

XXX

[sandraW]

Hi Bryansie,

Its good that you got to spend time with you brother, the people in the Hospices, are amazing aren't they, they were just the same in ours even though we were only there a short time, they knew we wanted to just be together as a family and left us to get on with things staying in the background but ready to give support if we needed it.

Lets hope your brother can get to his new home, hopefully if the hospice can get his pain sorted, he will feel much better and go home as soon as its ready.

love and hugs back to you too, take care sandrax