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Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: This cruel disease

Postby Proud Wife » Fri Feb 08, 2019 6:42 pm

Dear Keith

Fantastic to hear Kerry is stuffing her face. That for me says it all.

Fingers and toes crossed that her next scan brings equally fantastic results.

I might not post much anymore but I still come on and follow everyone's stories. I just can't help it.

Love Proud Wife x

KeithKerry
Posts: 54
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Sun Feb 17, 2019 8:11 pm

Before I mention my Daughter, Kerry, let me just say that I am still in shock about Erika. I had assumed (as I'm sure others had) that the Nanoknife treatment would give her an appreciable amount of time to carry on fighting. Although, I did see her post about Ascites, and that did set alarm bells ringing in my head. It was still a shock though.

I was not going to mention Erika's passing to Kerry, as I had used her as an example to follow for staying positive and battling on, and had also passed on every good wish and positive message that Erika had posted here in response to my updates.

It turns out that she found out through Facebook anyway. I guess that was always going to happen. So, we are almost one year since informal diagnosis (which turned out to be 100% accurate). We are on the second line treatment of Folfirinox after 6 months of Gemcitabine & Abraxane, followed by a 3 month break. At the end of that nine months Kerry was much better off than when she was diagnosed, with a stable and much reduced primary tumour and some lymph nodes that returned to normal appearance. The amount of cancer in her liver was also greatly reduced, and one point her liver was clear of anything that could be seen on a scan.

At the beginning she had a 3 x 3cm tumour on the head of her pancreas, two small lesions on her liver, and numerous suspicious looking tiny nodules dotted through the layers of her liver. Although she was reasonably well and had only experienced an attack of what turned out to be mild pancreatitis that led to the investigations and discovery of the cancer. Prior to that she was checked for gall stones, given Omeprazole for indigestion and reflux, and prescribed various fibres and supplements for Inflammatory Bowel Disease that was linked to Rheumatoid Arthritis.

The Folfirinox is really quite harsh. She has had blood clots in both of her legs, an unidentified infection which required very brief hospitalisation, and paradoxically, blood that is too thin. She also had a nasty episode of oral thrush which was really quite unpleasant for her. The combined illnesses put her off her food for a while and she lost weight. Recovering from those illnesses and benefiting from Mum's cooking is fixing that particular problem.

Other than that, she is symptom free and all of her ailments have been connected to the Folfirinox. She is soldiering on and is still smiling. The next round of treatment is on Wednesday (that will make three doses) and a scan is planned for the middle of March.

I will admit that watching her be so ill at times has been hard on both my Wife and myself. We both work at the hospital that she is being treated at which sometimes adds to the stress of what is a traumatic and horrific situation for all of our close family.

I will also admit that it has crossed my mind that quality of life really may be at least as important as quantity. But, I have broached that subject with her and I cannot repeat what she told me to do with that line of thinking. I won't mention it again!

Fingers crossed that next scan brings positive news.

Theresa Upton
Posts: 34
Joined: Thu Oct 11, 2018 4:39 pm

Re: This cruel disease

Postby Theresa Upton » Sun Feb 17, 2019 9:11 pm

Hi Keith, thank you for your update on Kerry, it is truly a difficult journey and I am so sorry that she has been unwell with folfirinox. Although the side effects for me are minimal compared to what other seem to suffer I am struggling but I am determined to finish the 12 cycles. My last chemo was reduced to 80% and the last few days have been better so when I go this week (number 9) I may ask for it to remain at 80%, I am also going to take a month off, I have a few things I want to do in March and I want to be well to do them. If Kerry continues to struggle she may want to consider a reduction or even a break (I had a month off over Christmas and New year).
I have also been devastated by Erika's passing, I found her to be inspirational and she gave us all so much hope, I did at one point think what's the point in trying to fight this horrible disease but I had a word with myself, brushed myself down and on I go.
My thoughts and best wishes are with Kerry, you and your family.