Inoperable pancreatic cancer

The chemo is brutal isn’t it. The diarrhoea has been the worst. I even have it in my sleep sometimes so have to wear incontinence pads at night.

good luck -hope all works out for you with the treatment

hmm. ok. thanks.  i have been double sock and glove-ing but not really making much difference.  Someone sugessted duloxetine. will ask my GP

Hi jeanieB

i have read your post an would like to reply as we are very similar,

I was diagnosed very suddenly at the end of may ( so just before you),, mine is also inoperable due to it being attached to blood vessels my cancer at mo , has also not spread to other organs, but it has progressed very slightly up my stent causing some issues 

I had 10 chemo  folfirinox from last August to January, I am now starting again with the same chemotherapy  at a reduced rate of 50% but to being unable to tolerate 100 % ( put me in hospital twice and made me very poorly)have been told chemo radiotherapy is not an option ,

my scans showed that the chemotherapy is not shrinking the tumour, but it is holding it stable and this is what we are hoping to achieve for now , I am not in too much pain just the usual chemo stuff , plus 2 back to back hospitals stays with sepsis, I do have oxycotin at home if needed I have not heard of pregabalin. 
your chemo side affects are the same as mine ( awful nausea I take ‘ cyclazine when I need to which when in chemo is quite regular, I find this works best but I also various others should I need them diahorria/ constipation is also an alternating issue as is the pain in my rectum when going, again I have medications some work some don’t. Weakness fatigue dizziness are all problems, but like you I have learned to cope as best I can.

so for the positive,, the ‘ beast as you call it ( I like that) has not shrunk , but it is stable while on chemo to me that is a great positive , and makes all the hard time more understandable and bearable.

I don’t know about you , but my teams that are all working with me are all amazing,, another positive , I had 6 operations to get the stent fitted  2 blood transfusions 1 platelet infusion 2 spells in hospitals with side effects and then stent replacement, another 2 long hospital stays with sepsis and now more chemotherapy with the hope it can be controlled,

so I pick myself up , dust myself off and say, I’m alive I have to cope with everything thrown at me  what can I do to help others ( maybe answer questions, listen, give someone support that they are not alone, ) please can you do one thing for me ,

each day find just one thing to laugh at / smile at , it will make you feel better, any question please feel free to ask ,

It’s good that thanks to Macmillan we don’t have to face this alone. I find comfort in knowing that others are in the same boat as me. I have had agonising pain since my last post. I had a Coeliac plexus block last week to help with my pain but unfortunately it didn’t work. On Friday I start 4 rounds of radiotherapy to hopefully help with the pain and if this doesn’t work the plan is to put me on methadone and I will have to be admitted to the hospice for this which I find scary. For now I’m taking one hour at a time as that’s all I can cope with. I’m grateful to be still alive 9 months after a diagnosis of stage 4 pancreatic cancer with secondaries in my liver and lungs. I wish you all well

Thank you for getting back to me my thoughts are with you, you are not alone, and although we don’t always know the answers we do know how to support each other, please feel free to message me anytime at all if only for a brief chat.

I also have a lot of anxiety. I went in for my whipple 12 days ago and it was aborted 4 hours in because of an artery that was involved and also some abnormality I was born with which I haven't had explained to me yet. I have a first phone call appointment with my oncologist tomorrow to discuss options and his recommendation. I just turned 60 and feel like my life is over. I am depressed and scared. My mother died of pancreatic cancer 11 years ago. 

Thank you for sharing, this is so great to hear with all the terrible statistics out there.

Hi Sanda I am in the same position, have my third chemo next week. I try very hard to take each day as it comes, but the fatigue and weariness in between sessions is hard to deal with, plus the digestion problems and lack of appetite.  It’s a cruel blow when one has been so fit for so long! I don’t want to die yet, I want to see my grandchildren grow up.  However positive thinking is good for the soul and a healer, and I take alternative medicines which seem to help me.  Stay strong and I wish you well x