Recently diagnosed - pancreatic cancer stage 3

Hi Diane, my mum (71) was also diagnosed with stage 3 non-operable PC about five or so weeks ago. We saw the oncologist last Friday and she will begin chemo this coming Friday if all goes to plan with pre-appointments/putting the port in etc. She will be given Folfirinox, 12 sessions, one every two weeks, which will take 6 months. The oncologist seemed hopeful the chemo would shrink the tumour enough for surgery to be considered, although he was worried about my mum's current physical state - the pain and not eating has really worn her down.

The oncologist and clinical nurse specialist did discuss some of the side effects and we will be seeing the CNS separately for more in-depth info - who to call if worried, infections, etc. 

He didn't discuss prognosis. My mum said she only wanted to know one step at a time. I think, overall, there is no answer about what is going to happen. I have done so much research and it seems everyone reacts differently to treatment and even PC itself.

I really hope everything goes as well as possible for you today. 

Hi Diane,

My partner is similar age and in the same situation as you. We see the oncologist on Thursday. I hope your visit to the oncologist went well. I think my partner will be a bit like MaudHen256's mother and want to take things one step at a time, whereas I like to know everything! I think his way is probably better for staying sane. I hope you are managing the pain and are comfortable.

Hi,

Thank you for your response, I hope your mum is doing ok?

I spoke to the oncologist Tuesday and I can have chemo. 
there is a 2- 6 week waiting list but hopefully it won’t be too long.

il have chemo once a week ( 2 drugs) for 3 weeks then a week off . I will have this for 4 months if all ok.

I too have to build up my strength though as I’m off my food but am trying to eat.

Hi,

im sorry to hear about your partner.

the oncologist has said I can have chemo which I’m relieved about.

I will have it for 4 months and keeping all hope I react well.

Hope all Went well with your partners appointment on Thursday? 

The appointment is tomorrow so we're keeping our fingers crossed. I hope all goes well with your chemo

He is having six months of folfirinox starting in a couple of weeks - hoping the side effects are not too bad

Hi Dianeu and Redcathy, 

That's good news treatment will be starting soon - Dianeu, which chemo will you be having as it doesn't sound like the way Folfirinox is usually given? Have they said why this is? 

It's been nearly two weeks since Mum's first chemo with her next due this Friday. I have to say, I think she has had every single side effect apart from an infection. It has been really rough for her and me and my sister looking after her. They are going to reduce the dose for her second, so hoping she won't suffer so badly this time. One very big positive is that her pain has definitely gone down a bit, so that might be an indication the chemo is working. 

I'm wondering how you, Dianeu, and your husband, Redcathy, are health wise at the moment, before treatment starts? My mum was not doing well before - she hasn't eaten in months, instead only having one or two fortijuice a day (we've given up trying to encourage her to eat as it just wasn't working and making everything more difficult). She is still on 50mg Zomorph too, with Oramorph for breakthrough pain, paracetamol and countless other meds. She is nearly back to what she was before the first chemo, i.e. come through the worst of the side effects, but still very limited energy and strength. However, four months ago, she was very fit and healthy, going to the gym three times a week, taking the dogs for an hour walk each day. It's frightening how quickly life has changed.

Also, what are your oncologists like? Ours is very upbeat and positive, but I fear a little dismissive. We saw him last week and despite Mum being in a wheelchair and obviously very frail, he left it up to her to decide whether to have the full dose or not for the next treatment (she said yes at the time!). He also won't give a prognosis - I discussed it beforehand with my mum and she said I could ask. 

Sorry to hear your mum is having a tough time. My partner (will be husband on 9th June!) Is in generally good health, he was fit and healthy before the diagnosis. Since being in hospital he had lost weight and gets tired easily but I'd say he's generally quite well. Our GP warned us that oncologists are very enthusiastic about treatment. Our oncologist was very to-the-point, and he did say the chemo would be gruelling. My partner is enthusiastic about the chemo too, I don't know if things would be different if he was having second thoughts.

We weren't going to ask for a prognosis but we got one, personally I can't see how someone can make a decision without one, but my partner would rather take each day at a time. But he wasn't expecting to have six months so he was surprised to be offered six months of chemo and so the oncologist explained it all.

It's a really difficult decision, I hadn't no idea how he'll take to the chemo, I think he is being quite bullish about the side effects, but it's his choice of course. If he does go on to decide he'd rather stop the chemo I'll support that of course, but I don't think he will.

That's good to hear your partner is in good health at the moment (congratulations on your upcoming wedding!). Hopefully he will be able to withstand the side effects better. I have read a lot that people tend to have a bad first week and then are back to normal for the second week, gradually getting better and better as the chemo begins to shrink the tumour. 

Did the oncologist say whether surgery might be an option in the future?

With the prognosis, was that six months without treatment for stage 3 locally advanced? 

I wish we had some sort of prognosis - I fear my mum is in denial about it all. She thinks she will have the chemo, get the surgery (where they only take out the tumour - she doesn't believe me when I say they have to take the half/whole of pancreas) and then she'll be fine. I know the chances of this happening are very slim, especially in her case when she is so malnourished and weak already, but I can't take that hope away from her either. 

It all feels so surreal at times with this huge mix of emotions, one minute hopeful and the next grieving. How are you coping yourself? Do you have support and physical help? 

The oncologist said less than 5 months without chemo, 12 to 18 with depending on whether it's spread to the liver (there are shadows but they're not sure). It's not operable, but I think it's human nature to hope for a miracle.

It must be really difficult for you to cope if your mum is in denial, I'm finding it difficult that my partner doesn't want people who aren't close friends/family to know, so people who know him ask after him and I have to say something vague. I also feel like some of the acquaintances would actually be quite supportive of they knew what was happening but also I understand there would be some people who would be difficult (one friend of his has already overstepped boundaries a few times).

I don't have much support locally, both are families live some way away (other than his daughter who is close by). My best friend is 50 minutes drive away but she had MS so is being very careful about mixing with people.

At the moment I'm not doing much extra (other than more housework and cooking) but I am tired. It's emotionally tiring as well as the physical side. 

Surreal is a good word. One minute I'm in tears, the next we're having a laugh about me trying to feed him up.