Trial for stage 4 PC - PRIMUS 001

Hello Sanita

I'm sorry to hear of your mothers diagnosis. My husband had Gemcitabine but it wasn't effective. Whilst he was taking it he had few side effects.

He then went on to Folfirinox. This has some of the components of Folfox-A. It was a more challenging regime and he ended up in hospital several times. Folfox-A seems to be using some of the previous components of chemo for pancreatic cancer but in a different combination. The trial is researching whether the combination is better this way.

Squeaky

Hi Squeaky,

Thank you for your reply. May I ask if the second treatment has helped him to stop from cancer growing, given him.more time? Do you feel it has been worth it? 

My mother also is in significant pain despite taking 30mg slow release morphine & 75ml pregabalin twice per day, and Oramorph, it is so hard to see, and not bring able to help...

Hi

my husband was diagnosed in May 2023 has just had his 18th cycle of Folfirinox-  his tumours in pancreas and liver have all shrunk and the one in his peritoneum has disappeared in his two previous scans - we have another next week - he was however very fit and healthy before and has been lucky to get few side affects and as of yet no hospital admissions so I realise we have been lucky - I think it is a harsh regime for most.

Thank you, Plum, so encouraging to read this! May I ask how old is your husband? My mum also is fairly fit and healthy, however she is 74, so I understand that this experience could be very different for her.

1. He is 53 - luckily has never had any pain went in with suspected diabetes - has your Mum been prescribed Creon as this really helped too especially with gaining weight.

Hi Plum, yes, she takes Creon which helps her hugely. Sending you both best wishes! And thank you

hello Sanita

I'm sorry to say that the second line treatment was not successful. My husband had the Whipple operation which removes part of the pancreas and other organs but the disease recurred.

People have different views which I respect but in my husband's case the chemo was not of any use and simply made him ill.

He had considerable pain too.

Squeaky

I don’t know your situation my husband is classed as stage 4 incurable so palliative chemo was and still is our only option, he was given a prognosis of 2-3 months and we are still here 10 months later. It is a harsh regime and definitely not for some as the side effects can be awful - like I said we are ‘lucky’ as we can be in a very bad situation and he seems to be able to get away with few problems.

Hi my partner of 52 has just been diagnoised - but it has spread to his peritoneum also we have been told this is invcurable ur post has give me a goimmer of hope in such dark times . We are all trying to process the whys the hows x i am glad ur husband is doing well x