What To Do Next

Hi There

I would like to hear from anyone who can give me advice from personel experience in regards to my P/C.

I was diagnosed over a week ago with inoperable P/C after a 3 week stint in the hospital.

I was admitted for various diagnostic procedures due to an abdominal mass and jaundice,at first I thought it was Gallstones as I new I had them but was told it was an obstructive mass in the bile duct that had to be removed with a stent inserted to increase the diameter of the duct.

When I was discharged I had to attend a follow up appointment with one of the consultants who explained that after the biopsy the mass was a tumour.

I generally keep in good health although for the past few months I find that I tire very easily and am losing weight.

I am now waiting for an appointment with a specialist oncologist to discuss where I go from here, any advice about questions I should ask would be very much appreciated.

From Davie

I am really sorry to hear your news Davie. It must have been totally gobsmacking. I am not sure whether you have had your oncology appointment yet but treatment will depend on a variety of factors including but not limited to disease progression, general health, age, fitness, location. You haven't mentioned whether it is inoperable due to metastases or the situation of the tumour.

You are probably looking at chemotherapy though. There are two main options here - the standard gemcitabine and the more aggressive (but consequently far more toxic) FOLFIRINOX. The latter has the longer progression free survival but not everyone can tolerate its effect. You should know - and I say this as gently as I can - that a 'cure' for inoperable pancreatic cancer is very rare. Alternatively, you may be offered participation in a trial as treatment for PC is at the edge of current medical knowledge. Some people opt for no treatment at all, some take the alternative medicine root, some do chemo but add in alternatives like LDN, vit C, vit D etc.

Everyone has different reactions to the diagnosis - anger, bemusement, disbelief, shock, depression. Do talk about this aspect with family, friends and/or healthcare professionals. Looking after the soul with this disease is as important as looking after the body - the two are inextricably linked in survival.

I am happy to answer any queries you have to the best of my ability but I am not a healthcare professional. I wish you the very best of luck.

hi davie, sorry to read your post, diagnosis is earth shattering. then begins the rollercoaster.

my hubby bri diagnosed feb 2010, attempted whipple apr 2010, unsuccessful , tumour wrapped round smv [ superior mesenteric vein], sewn up after couple of "alterationsd inside"?

bri lost 4 stone prior to op[ done in xx]

started chemo "gemcap" was a trial, he did very well on it, had 19 months [ cycles]

had two shrinkages during this time, no chemo since nov 2011, scan every 12 weeks, just had one yesterday, we see oncologist on thursday for result, he does get tired but we still have a life, albeit slightly differant,, he is now 63, we were told in may 2010 that possibly 6months ish!!!

he / we have maintained a very PMA and i really thinks this helps, but other than that its in the lap of whoever.

its not an easy road, but it can be walked with care.

you are probably losing weight because your pancreas is unable to process your food and obtain the goodness from it, you possibly need a digestive enzyme replacement, bri takes creon, there are various strengths bris are 25000 and takes between 8 or ten a day.

do hope you have a good hospital and team looking after you. we are in cornwall. uk

i believe that there is a booklet? available from pcuk with a list of questions for you to ask, would suggest you write down anything you think of, but equally do WRITE DOWN THE REPLYS, cos you will forget, honest, likewise im not an authority on pc, can only relate our journey, hope this helps, take one day at a time and stay strong,

kind regards laura x

hi again davie, i would add, dont wait too long before you start chasing your app, some hosp appear not too quick with initial app, this is about your life, be polite but be FIRM, we have recd ist class care and to date have had no need to do this but i know many on here have had to? what area are you from? cos you can choose, i believe, where to be treated, cheers laura x

To Kicking the can & Laura

Thanks for the advice guys,I've just had my first meeting with the Oncologist and was told the cancer was inoperable due to it's location. The Doctors and nurses could'nt have been more helpfull in explaining the condition. I am going to start chemotherapy shortly if the Jaundice shows signs of improvement which i'm sure it has. I was told that I would receive Gemcitabine 3 weeks on 1 week off to stop the cancer spreading as the tumour seems to be localised to one area, my family and doctors are surprised that I'm taking It so well but I refuse to let it beat me. Although I feel lousy at times I try to keep as fit as possible. The only thing at the moment that concers me is the possibity of having another E.R.C.P to get another stent inserted to fix the plumbing and help with the jaundice as the last one floored me. Theres still a lot more questions to be asked just one step at a time.

Best wishes

Davie

Hi Davie,

Im sorry to hear about your diagnose. Its positive that you have been offered chemo.

My Dad was quite similar. The Jaundice really floored him and once he got it cleared with the metal stent he was good for Chemo. He had Gemcitabine also 3wks on and 1wk off. This thankfully agreed with him well, so much so that he was feeling alot fitter and put back on almost 2 stone.

Best of luck with the chemo and stay positive!

Takecare ..Rachel

To Laura and Rachel

I have to admire the strength and courage you have with the advice and kind words you have given to myself and other people. I have been following some of the other forums to learn as much as I can. thats me now ready for chemo now that the jaundice has cleared, the stent seems to be doing its job for the time being so ive now only got a couple of weeks before I start the gemcitabine 3 weeks on 1 week off I'm not entirely sure how many treatments I might require. Ive also been offered the chance to take part In some trials to monitor the weight loss problem with P/C patients as i'm still resonably healthy so im waiting for more information. If it helps myself and other people I'll definately consider it.

Best wishes

Davie

hi davie, wondered what had happened to you, great you have been offered gemcitabine, thats part of the treatment brian had, he tolerated it very well. hope you are the same.

regarding the stent brian did have his replaced in the beggining because it got blocked. but has been fine since may 2010.

any trial you can be part of, has to be good for everyone i guess.

if your weight [ well loss of it !!! ] is still a problem, have you been offered creon? i actually asked our specialist nurse for it, the reply was well you can try it if you want, we did and bri is still taking them, i am sure they helped him put back on 2 stone, and he now maintains it. in spite of eating lots of chocolate, n trifle, hmmmph!

in the beggining we thought what the heck, its fancied, so eat it, and have to say pretty much still of the same opinion.

you will probably find your taste buds will change, will be trial and error what you like, we had meal replacement drinks from the surgery, several differant flavours, they really helped when he didnt fancy food, didnt last throughout the 19 months of chemo, and now 10 months off chemo, almost back to normal, beef was and still is the most difficult to digest, get nutrients from. wishing you so much good luck and love, stay positive, exspect to be tired, just go with it and sleep when your body tells you!!! laura xxx

Hi Laura

I hope you and Brian are keeping well, I seem to be doing quite well so far and the creon you mentioned seem to work well if I take them properly. At the moment my weight is normal and I'm still trying to exercise as much as possible without overdoing it, as I've mentioned before I refuse to let it beat me must think positive. But as I've only recently been diagnosed I'm sure things will change. Thanks Laura best wishes.

Davie