New here - dad with pancreatic cancer

[Cazza]

Hi there

My father was diagnosed with PC about three months ago. Initially, the experts thought he had Adenocarcinoma of the lungs because a 'suspicious' mass on his pancreas was visible from a separate scan taken three years ago, and they said that if it had been cancer, he would have died a long time ago. His lungs are both full of nodules and this was the assumed primary until January this year, when he fell ill. Eventually, after a lot of tests (and hassle), the diagnosis emerged of primary in the pancreas and secondaries in the lung. Needless to say, he was just getting to grips with the idea of a terminal diagnosis of lung cancer - and now is really struggling with the darker reality of PC.

I am really involved in his hospital visits, chemo etc. From reading some of your posts, I guess I don't need to say how stressful it all is and I suppose I am looking for support/resources in this difficult time. He is apparently a very odd case, because the cancer in his pancreas has been around for so long. As the consultant said, he is 'long past his sell by date' (sounds more insensitive than it was - he is a lovely chap). He started chemo four weeks ago (GemCap) and has been Ok ish apart from frequently spiking fevers of around 38 degress. At first the docs said it was probably due to infection (he had two stents inserted prior to starting chemo) but now they are so common that they think it is due to the cancer. Has anyone heard of that before ? He gets all shivery and unwell and it lasts for a few hours.

The thing is, he is too scared to ask how long he has left and whilst we have skirted round the issue, the consultant is very unwilling to even give a ball park. Is it impossible to take a stab at this sort of thing? He is obviously stage 4 but a weird stage 4, as explained. His general health is good and he is pretty fit. I know that no-one can really tell time he has left, but can anyone give me an idea of the progression of this sort of thing. How do they decide when to stop giving chemo and let things go. What are the signs? What is the beginning of the end like, the middle, the end like? We have absolutely no idea and my dad won't ask in the meetings with the doctor. For a control freak, I feel so out of control!!

Thanks

C

[laura]

hi cazza, my hubby is also on gemcap has been for the last 12months,mostly doing ok. since his 9th 4 wk cycle he too experiences hot and cold shivers he says he feels cold right inside but is very hot to touch, i keep an eye on his temp, we have a tel no for the oncology ward if i am concerned, has only been admitted once due to high tenp, mainly does seem to sort itself out, have you got a specialist nurse attached to your care team? or a macmillan nurse? we have found both to be very helpful.

take care and best wishes to your dad and you xx

[PCUK Nurse Jeni]

Hi Cazza,

Sorry to hear about your dad, and it is an remarkable story that it has been there so long.

Are the temperatures he is getting due to his blood count or neutrophils? This can happen if he gets low neutrophil count from the chemo. I am sure this was explained to him at the chemo unit? Sometimes this happens after chemo, and just settles down itself. He gets the shivers because it is the body's way of reacting to being very hot -it tries to cool itself down.

Prognosis is always difficult, and consultants tend to steer clear of giving exact time lines.

It is good that your dad is a fit man, as it will stand to him during his treatment.

Feel free to email support@pancreaticcancer.org.uk if you have any other questions,

Kr,

Jeni.