Treatment or not

[Lucyloo]

My dad was diagnosed 12 months ago, had his whole pancrease removed and 6 months of chemo, he had tumour markers in his blood 4 weeks ago, which lead to a scan and the discovery of cancer in his pancreatic bed, liver and lung. We were told it can't be operated on, he can have chemo, a tuff form, to help with symptoms, one every 2 weeks , 6 in total. His pancreatic surgeon told me he only has 3 months and possibly an extra 6 weeks with chemo to live, we have kept this from him, he knows he's terminal, he is in some pain but is managing it with oxinorm and oxicontin. He doesn't want anymore chemo, and I agree with him to a point, but part of me is scared we are giving up ? Can any one tell me there experience and how long there loved one lasted, what else should I be doing for him.... Any info grately appreciated!

[Didge]

Hello Lucy, sorry to hear the familiar story of your dad. Apparently it is very common for PC to return around 12 months after the op. You say your dad knows it is terminal and as for the 3 months, nobody can know that, it is just a guide. If he doesn't want chemo and I can understand that, why not try something more gentle? my bf is having herbal medicine from a very highly regarded medical herbalist in London and says he feels so much better from this. I also have the name of a practitioner in the Midlands who comes highly regarded and is known for 'keeping people going' much longer than their prognosis suggests. Of course, PC is highly deadly, we know that but if you are looking for something which might help for a bit longer and will not make him feel worse like chemo, then please ask the moderators how to ask me privately (I am not sure how to do this) and I can send you a message as I am not allowed to put names on here. Others here will give you info of how long their folk lasted, mine is still alive for the time being! Thinking of you in this turbulent time!

[Lels]

Hello Lucy, I am sorry to hear of your Dad's battle with this terrible monster.

I was diagnosed a year ago too..stage 4 with mets to the peritoneum. I had 6 months chemo and this slowed down the growth of the tumours.

After the 6 months I decided not to have anymore treatment as I had awful side effects from it. That was the beginning of Nov and I am still here, enjoying quality of life over quantity.

My family also feel that it is 'giving up' but thats not how I see it at all. I don't know how long I have got left, but at least I am enjoying this time, instead of constant sickness and hospital appointments.

I don't know if this will have helped in any way, and I hope that you and your Dad find the answer you are looking for. Lots of love Lesley x

[Cathy]

Hi Lucyloo

Sorry to hear about your Dad. As the others have said, no one can really say so all I can offer is from my own experience. My partner was diagnosed with PC with multiple mets on his liver plus his peritoneum. The consultant couldn't believe he was still walking (let alone look and feel so well). He had 8 cycles of folfironox which I suspect is the chemo your Dad was offered. He responded to this and actually it was 13 months after diagnosis that he died. It is a tough regime tho and if your Dad had decided against it in the light of the full facts about it (for example, time frames differing from person to person) then you can only respect that.

What I would say it to get as much support as possible. Has he a community palliative care nurse (or Macmillan nurse) who sees him? They are trained to deal with end of life stuff and can support both he and the family prepare for the eventuality.. For example, discussions about care in home, local availability of hospices, pain relief etc.

All the very best of luck. Make sure you are getting support for yourself too!!!

Cathy xxxx

[Lucyloo]

Thanks for your responses, I am meeting without my dad, on Tuesday with oncologist, so I will have my list of questions ready , it feels very strange not taking the chemo, like I'm doing nothing just waiting for him to die, he is very undecided, but he has a time frame of 12 months in his mind, if he knew he possibly had 3 months I think he def wouldn't take it and wouldn't want to be in and out of hospitals ! I know it's his decision and we are all fine with what he decides, I just want as much info I can get , for him, so he can decide which is hard when he has a longer time frame in mind. He is still working and full of life if I tell him what I was told I think he will crumble x

[J_T]

Hi, sorry to hear about your dad. As the others say, no one can tell you how long,mor indeed how long the person will be well. My husband was unwell from Christmas 2012 and continued to fell unwell pretty much up to his death in Oct 2013, 7 months after diagnosis. He had 5 courses of folfirinox and one of gemcitabine. The fatigue was relentless and debilitating. We had some nice days but weren't able to go on holiday or anything like that. His experience was in total contrast to others who remained quite well and enjoyed life. I am telling you this so you can see that everyones experience is different and thats why choosing to have treatment or not makes it so hard.

He could always try the chemo then stop it at ant time if he thought the negatives outweighed the positives.

Good luck.

Julia

[Didge]

If he wants inspiration from someone who has not had chemo he can google Wilko Johnson who is still going and performing 5 months after his 'due date'. Of course he was given longer than your dad in the first place, but as we've all said, nobody knows how long, it is only a rough guide.

Didge x

[sandraW]

Thinking of you, it is so difficult to make, or help your Dad make, the decision on wether

or not to carry on with treatment, its just personal I suppose. It depends on how the person

copes with the treatment, because no one can really say when the end will be, or even if

the disease will respond to treatment, take care sandrax

[Didge]

Oh one other thing, I had a friend whose mother had inoperable PC and was given 6 months to live. She had no other treatment. The family decided not to tell her and she lived another 20 years as the tumour stablised! I realise this is unusual and it is debatable if her not knowing the 'time limit' had any impact. we'll never know. Just thought I'd throw it in the mix of demonstrating how every individual is different and the outcomes can vary wildly so all you can do is allow the person to make their own decisions and to support them. There is no right or wrong way, this is not something which is going to be curable in the long run, so their quality of life and their decisions as to their own path must be up to them.

[PCUK Nurse Dianne]

Hi Lucyloo and others on the forum,

I am really sorry to hear your story Lucyloo, and I just wanted to add our mix on this 'glib outcome' by your father's oncologist. Firstly, no one can predict how long a patient may have with or without treatment, it is always an estimate. Often we have an estimation when someone has advanced disease and they are quite poorly, there are usually signs that can help predict their survival. For a patient who is reasonably well, and has no overt symptoms, but is diagnosed by CT scan, it is not so easy to predict. We all know of people who have not done so well, and often their life span has been shortened due to other factors related to cancer (so a clot or severe infection or even a bleed) and we also are aware of many patients who have far outlived the prognosis given by their oncologist.

I am sure most of us can speak of people who were told they might have a short time span, and are still here fighting after 12 months. I apologise in advance to those who have not been in this fortunate situation and sorry if this may be upsetting for you.

Our aim is to give patients information so that they are well informed and feel able to make an informed decision for themselves, not for an oncologist to say it 'may only give you another 6 weeks', this should not be a comment that we are hearing ever so frequently and inappropriately of late. The conversation should also be about giving patients some hope, that is what this is about, try to be encouraging and inspiring. I would like to think that any patient's oncologist would give a balanced answer by saying that chemotherapy does not suit everyone, but it is worth giving it a go, you can stop the treatment at any time during the course of treatment if it is making your symptoms or quality of life worse. No one can predict those patients who will tolerate it well and those who will not. It should be a patient (supported by family/loved ones) decision when they have been given all the important information about the treatment, any expected side effects or risks, and of course the benefits. It is also about quality of life, many people feel that quality of life is not improved by chemotherapy, which is not always true. Many patients have very good quality of life on chemotherapy as it can help with symptoms of pain and nausea; the patients often benefit from regular contact with the oncology staff and other patients that they see on a regular basis, and symptoms are often managed well by the team.

I usually say to patients that it may be better to try chemotherapy in the first instance, rather than get to 6 months down the line and then wish you could 'turn back the clock' and have that opportunity, especially in this particular cancer. If the patient decides after a few cycles of treatment that it does not work for them due to symptoms or quality of life issues, it really is a matter of discussion with the oncologist involved, sometimes treatment doses can be reduced to decrease side effects, other medications given or even a change of chemotherapy. If the patient decides that they do not wish to continue then that is there decision and every support should be given at this time.

Please do feel free to discuss any of these stories with us, as Jeni and I can talk through them with you if you are finding it difficult, we can talk through symptoms and give you some information that may not have been discussed with you about the advantages and disadvantages of treatment regimes. I do hope this is helpful Lucyloo and others that may find yourselves in a similar situation.

Dianne

Pancreatic Cancer Specialist Nurse

Support Team

[Lucyloo]

Thank you all for you're replies, and hi again, thanks so much Dianne,

We decided to meet today with his oncologist , it was suggested by his oncology nurse when I phoned the other day to discuss, the situation. I was glad I went, without dad, to ask all I needed to, he seems to think my dad should give it a go, and as was said he can stop the treatment at any time, it starting to feel more natural, by just doing something where as last week I felt we were just taking the news and lying down!!! today wasn't a good day for dad as his 94 year old mum passed away, great age no serious health issues ever, and I also realised hearing my dad saying good bye but telling his mum, that he didn't want to go just yet, and if she could, would she help him , heart breaking but made me realise that maybe if he did know it was 3 months and not 12 that maybe he would grab the chemo with both hands hoping as a result he would get longer!! I spoke to him tonight and he asked me to call the hospital to arrange the chemo, for next week, and please god he will manage it ok!!!

Is there anything I can do to make it or any of the side effects easier x lucyloo

[sandraW]

Hi Lucyloo,

Sorry to hear about your Dad, and your Grandmother too, side effect seem to vary in severity Trevor my husband has tingly fingers so wear gloves nearly all the time, when he gets a sore mouth I just cook soft food for him, he is lucky he doesn't have any sickness, but is usually very tired. I hope your Dad does well and that he surprises every one with his response to the treatment take care sandrax

[Cathy]

Hi there

As Sandra says, you can't really predict side effects, some people do better than others and it varies on what chemo is offered. A lot of side effects can be mitigated, eg drugs inc steroids for anti sickness and drugs for diahorrea. Mouth ulcers can be helped by a mouthwash (Nifflam) and oral thrush by drops. The chemo itself can also be altered to help alleviate some side effects. You will really only know by giving it a go.

If you know what the chemo is going to be you can read more about it on this and the Macmillan website which gives a very comprehensive account of what side effects to expect for each chemo (of course I would hope that the oncologist has already provided these)

Very best of luck

Cathy xxx

[Guest]

Sorry to hear about your dad, but pleased to hear he wants to fight this.

I know how devastating it is to hear your own dad say he doesn't want to die, and to feel so incredibly helpless. He needs to be as positive as he possibly can be. I believe that just having positivity can prolong his life.

My dad has started chemo and has had his 2nd session. He says he doesn't want to die, and it breaks my heart. He is more positive than I am, and he's putting up a good fight. It sounds like he has a great daughter that is going to fight his corner. I wish you all the best.

xx