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by PCUK Nurse Jeni
Wed Sep 09, 2020 4:02 pm
Forum: Patient Experience Forum
Topic: Reaction to Folfirinox, reassurance needed please.
Replies: 3
Views: 253

Re: Reaction to Folfirinox, reassurance needed please.

Hi Clare,

I have emailed you now.

KR,

Jeni.
by PCUK Nurse Jeni
Wed Sep 09, 2020 12:12 pm
Forum: Advanced pancreatic cancer
Topic: Ascites/Advanced symptoms
Replies: 2
Views: 476

Re: Ascites/Advanced symptoms

Hello Anna, Thank you for your post on the forums. I am sorry to hear about what is going on with your mum - I am sure this is an anxious time for you all, with a lot to take onboard. Anna, there is a lot contained here in your post, and I will reply to you via email as its easier when there is a lo...
by PCUK Nurse Jeni
Wed Sep 09, 2020 11:19 am
Forum: Treatment & side effects
Topic: Pancreatitis 3 Years After Whipple?
Replies: 6
Views: 840

Re: Pancreatitis 3 Years After Whipple?

Hi there, We are so sorry to hear that your MIL has passed away from pancreatic cancer. Please accept our condolences from all of the nurses here and the wider charity. It is remarkable to hear that she lived with pancreatic cancer for 4 years, nonetheless, still difficult to lose a loved one. I am ...
by PCUK Nurse Jeni
Wed Sep 09, 2020 11:11 am
Forum: Patient Experience Forum
Topic: Reaction to Folfirinox, reassurance needed please.
Replies: 3
Views: 253

Re: Reaction to Folfirinox, reassurance needed please.

Hi Clare, Thank you for your post on the forum. I am sorry to hear about your mum. I can imagine that this is new ground for your mum and yourself, so quite a lot to take in. Clare, I will reply to you directly as there are quite a few queries here and easier to address in an email. Kind regards, Je...
by PCUK Nurse Jeni
Tue Aug 11, 2020 1:22 pm
Forum: Patient Experience Forum
Topic: Does anything neutralise the taste you get as a side effect of chemo?
Replies: 2
Views: 360

Re: Does anything neutralise the taste you get as a side effect of chemo?

Hi there, And welcome to the forum. Thank you for posting, and hopefully, you will get some replies from folk who have personal experience of this themselves. The metallic type taste in your mouth is most likely from the Oxaliplatin part of the chemotherapy. It is quite common to hear those who are ...
by PCUK Nurse Jeni
Wed Jul 08, 2020 3:42 pm
Forum: Family, friends and carers
Topic: Dad's PC - Stage 4 with liver mets
Replies: 2
Views: 1200

Re: Dad's PC - Stage 4 with liver mets

Hello c, Welcome to our forum. I am sorry that you find yourself on here, and to hear that your family has been affected by pancreatic cancer, and that this has been compounded by the Covid 19 pandemic. It seems as though things have been going relatively well, as you say, until recently. C, do you ...
by PCUK Nurse Jeni
Wed Jul 08, 2020 3:22 pm
Forum: Treatment & side effects
Topic: Prolapse surgery with pancreatic cancer
Replies: 2
Views: 770

Re: Prolapse surgery with pancreatic cancer

Hello Jo sister, Welcome to the forum - understandably, not a place anyone wishes to be, but we hope a place where you will get mutual support from others on here. I am so sorry to hear about your sister - this sounds so painful. I wonder, has your sister considered a second opinion from a different...
by PCUK Nurse Jeni
Fri Jun 26, 2020 10:33 am
Forum: Patient Experience Forum
Topic: First folfirinox experience
Replies: 4
Views: 1233

Re: First folfirinox experience

Hello Mo2020, Welcome to the forum and thank you for your first post. In order to maximise your replies, and to ensure the post is visible, I have moved it to its own topic, which means the thread will be replies to your post alone. Its good to hear that you have been able to have a Whipples operati...
by PCUK Nurse Jeni
Tue Jun 23, 2020 3:16 pm
Forum: Family, friends and carers
Topic: Dad’s Pancreatic Cancer
Replies: 1
Views: 849

Re: Dad’s Pancreatic Cancer

Hi There, Welcome to the board - I hope that you will find it a welcoming and helpful place to ask questions. Please don't hesitate to contact us should you need to - its good to hear you found your phone call useful. Kind regards, Jeni. Jeni Jones Pancreatic Cancer Specialist Nurse Support Team Pan...
by PCUK Nurse Jeni
Wed Jun 17, 2020 1:09 pm
Forum: Patient Experience Forum
Topic: First folfirinox experience
Replies: 70
Views: 84270

Re: First folfirinox experience

Hi Kate, My apologies for the late reply - I had posted a reply, but due to maintenance on the forum, it doesn't seem to have uploaded. Lovely to hear your inspiring update - so hope filled and also, quite busy in all the things you have managed to do! You really are doing amazingly, and still manag...
by PCUK Nurse Jeni
Thu Apr 23, 2020 10:07 am
Forum: Patient Experience Forum
Topic: Recently diagnosed and concerned about surgery and chemotherapy
Replies: 7
Views: 3655

Re: Recently diagnosed and concerned about surgery and chemotherapy

Hi FishNChip, Thanks for your post on the forums. We would like to take this opportunity to welcome you to the discussion forum, and we hope that you find it helpful. These are difficult decisions for you to make no doubt, and you are doing the right thing by gaining insight into how others have cop...
by PCUK Nurse Jeni
Tue Apr 21, 2020 10:35 am
Forum: Treatment & side effects
Topic: Bile duct Stent
Replies: 1
Views: 2391

Re: Bile duct Stent

Hello Vera, Thank you for your post and I would like to take this opportunity to welcome you to the forums - although of course, not the place you would wish to be visiting. Vera, the pain you are getting might be because of a couple of different things - I wonder whether you might wish to call us o...
by PCUK Nurse Jeni
Fri Jan 17, 2020 1:14 pm
Forum: Family, friends and carers
Topic: The nightmare so far....
Replies: 40
Views: 66294

Re: The nightmare so far....

Dear AndAde, Thank you for your post. I am so sorry to hear the news about your husband. It was good that he passed away peacefully, and that this was made possible by the support of the palliative care team. And that you had such closeness at the end of his life. No doubt this is a difficult start ...
by PCUK Nurse Jeni
Thu Jan 16, 2020 1:13 pm
Forum: Treatment & side effects
Topic: Lynparza -olaparib)
Replies: 1
Views: 3010

Re: Lynparza -olaparib)

Hi there Nighean, Thanks for your post. Yes, olaparib has been used in the UK in the POLO clinical trial - which is now closed to recruitment. It was used in BRCA mutated pancreas cancers, and the results are due in February 2021. More here: https://clinicaltrials.gov/ct2/show/NCT02184195 There is a...
by PCUK Nurse Jeni
Tue Jan 14, 2020 4:57 pm
Forum: General chat
Topic: Our wonderful nurses
Replies: 2
Views: 3305

Re: Our wonderful nurses

Dear Sandra and Mo, Our heartfelt thanks to you both for your lovely wishes. We were all overwhelmed and surprised, but honoured to receive such a prestigious award. It is our privilege to support those affected by pancreatic cancer in a small way. Kindest regards, Jeni. Jeni Jones Pancreatic Cancer...

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