Pancreatic Cancer UK

Hi Michaela, I assume you are taking creon for your digestion? If so, what dose are you taking? Its possible that you are not taking enough, and this might be contributing to the issue. Do email us - details below. Kind regards, Jeni. Jeni Jones Pancreatic Cancer Specialist Nurse Support Team Pancre...

Hello Staystrong, I am so sorry to learn that your dad passed away so quickly after his diagnosis. Our thoughts go to you and your family - and our condolences to you all from all of the nurses on here, myself, Dianne and Rachel. I think Kerry has a point about going back to work so soon - aware tha...

Hi Toodotty, Sorry to hear all of this. The reason you would have had all the work up is that they will follow a neutropaenic sepsis protocol until proven otherwise - its the same across the country. Because you are on chemotherapy, it is something which needs to be acted upon quickly - so, antibiot...

Hi Toodotty, No we have not heard of this, actually, but it sounds really good. It looks like it was first set up for Kidney Transplant patients, but seems it is branching out. The local unit has to have the Patient View facility as far as I can make out - I haven't delved into it in depth, but have...

Hi there,

Perhaps email our fundraising team, and they may be able to help you?

The details are: fundraise@pancreaticcancer.org.uk

Kind regards,

Jeni

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Hi Michaela, Sounds as though you need more creon also - certainly double the 40,000 dose, and more for the crisp snacks - at least 20,000. You are welcome to call us or email us if you want more advice on creon. Details below. Kind regards, Jeni. Jeni Jones Pancreatic Cancer Specialist Nurse Suppor...

Hello Kerry, I am also so pleased to hear that your dad has got a place at the hospice - and you are right, they are peaceful and happy places and not in the slightest bit rushed. He will be so well cared for there. Also great to hear that you might be able to access some support via the hospice you...

Hello Keith, Thanks for posting this absolutely fantastic news! I am so happy for your daughter, and yourself, and the family - you have been amazing going through this together. This really is a fantastic result - after 3 months of chemo! lets hope the next 3 cycles will make a good fist of the rem...

Hi timefortiffin, And, thanks all for the posts. I wasn't sure, timefortiffin, whether your relative has already had the Whipples and now has local recurrence or not? Or, what did you mean by local recurrence? You are welcome to drop us an email to explain a bit more if that's OK, and hopefully, we ...

Hello Kerry, I am so sorry to read your post and the news about your dad. Certainly, it is very difficult to watch your dad going downhill, and no doubt, your desire is for him not to suffer in a protracted way. It has not been easy for your dad, reading your post, with all the complications also, a...

Hello Mrshappy, Thanks for your post, and thanks Veema for suggesting a call/email. I also agree with veema - Folfirinox is extremely toxic and difficult to tolerate. It is an aggressive regime, and can cause neutropaenic sepsis frequently - I think he should have some time off to recover from these...

Hello fairy, Thank you for your post, and sorry that you have ended up on this forum and that your family has been affected by pancreatic cancer. I am sorry to hear how difficult things are right now. Can I ask, do you know what chemo your mum has had? And has she had a second opinion from another o...

Hello Toodotty and Kate, Firstly Kate, the footy was sad for England, but they have done themselves and the whole country proud! They gave us all a wonderful and entertaining time, and I am sure for some of you folks on here, something else to focus on, albeit, momentarily. Toodotty, your gp sounds ...

Hello Pippin, Thank you for your post. I am sorry to hear that you have been experiencing some health issues for a few weeks now. I can understand your concerns surrounding some of your symptoms. I wonder Pippin, if you might wish to give us a quick call tomorrow (Friday 6th July) so that we can spe...

Hello H, The reason the chemo is the way round that it is, is that you cannot have Gem/Abraxane as second line treatment on the NHS presently, so if Folfirinox was not working, your mum would have no otpions left available, other than Gemcitabine, which has not had the same outcomes in clinical tria...