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I’m 58 years old woman and 12 months ago I was diagnosed with stage 4 pancreatic Cancer with secondaries in my lungs and liver. I was given months, weeks and possibly days to live. I’d seen my GP with what I now know are classic symptoms of pancreatic Cancer, awful gastric reflux and pain in my upper back. My GP put this down to the stress I was under at the time and sent me away with two months supply of Omeprazole. I will always wonder if I’d been diagnosed earlier I may not have developed secondaries 

In February I completed 12 rounds of Folfirinox chemotherapy followed by 4 radiotherapy treatments to help manage my pain. I’m now having Gemcitabine chemotherapy with 3 weekly treatments followed by a week ‘off’. I’m to continue with this treatment until my 3 monthly CT scans show that the Gemcitabine is no longer working. Has anybody else had this chemotherapy and how have you found it? The first treatment gave me terrible nausea and diarrhoea so I’ve been prescribed a better antiemetic which has really helped 

medication wise, 

the medications that have really helped me among other things are

Pregabalin Zormorph Ketamine Dexamethasone  Creon and  Oramorph for breakthrough pain when needed

Before my diagnosis I was an active ( although looking back I noticed I was feeling very tired and losing weight which I put down to stress) I was 10 stone and a year on I’m 14 stone mainly due to the steroids I’m taking and the medications that I’m on that increase my appetite. I’ve gone from a size 10 to a size 20 but I’m alive! Has anyone else put weight on like me? I mainly read about people losing weight and not gaining weight 

l have  gone from being an active person to walking with a walking aid, using a wheelchair, reclining chair, electric chair to help me get in and out of the bath, a shower stool, frame that fits round the loo to help me get on and off it and handrails for the stairs.(I hate that I’m losing my independence and sometimes need help getting in and out of the shower and doing my shoes up) All these aids  have been supplied by Macmillan to whom I’m very grateful. I really can’t fault the care I’ve had.

I’m determined to make the most of the life I’ve got left whilst being  terrified about the day I’m told that there’s no further treatment for me. I’m the happiest I’ve ever been and have so much to look forward to. This cruel disease has robbed me of my future 

Lots of questions, sorry but I’m interested to know how others have felt when they were told that there’s no further treatment available for them

sending virtual hugs to you all



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Hi. I was moved by your post and would like to share some thoughts. Although myself being no cancer patient I am a caregiver to my Dad whose journey is identical with yours so far, 12 rounds of Folfirinox followed by radiation and now Gemcitabine. When it stops working and this will happen in the next few months we are going to try FOLFIRI with liposomal Irinotecan which as far as I know is the only third line chemo that has been officially approved. There are other options as well. Cisplatin etc.

Best wishes to you. Greetings from Bulgaria


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  • 2 weeks later...

Hi Favlemv

Sorry to hear about your experience. Not sure if I can offer any help as I have just started on gemcitabine and have the entire buffet of side effects. Currently in hospital being checked over for these. The nurse said it is common to have this many side effects with this regime but as for it no longer working, I didn't know this was possible. I do hope they change my treatment. I have had Folfirinox which was evil too. The only treatment I could tolerate was radiotherapy and chemo tablets. 

I totally get how you feel, we're about the same age and I too was diagnosed a year ago. I have always been fiercely independent and hate asking for help and relying on people. 

I hope you are getting the psychological support you need as this is so important right now. 

Take care of yourself and keep us updated and hopping they find a forward for you. 

Angelina xx

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