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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: 60
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: 62
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.

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: This cruel disease

Postby PCUK Nurse Jeni » Tue Feb 19, 2019 4:35 pm

Hello Keith and also, Theresa,

Great to hear the updates, as well as the challenges.

Keith, it must be hard when both you and your wife work at the same hospital where Kerry is being treated - it must seem hard to get a "respite", so to speak, not that you want this more than likely, but you will appreciate what I mean.

It must be incredibly hard to watch a loved one, especially your child, go through this kind of intense regime of treatment. As her father, probably devastating. You do seem to be "in this together" - I hope you don't mind me saying - and your relationship seems strong and so encouraging. There is no doubt that this isn't what any parent expects to need to do for their child - but you have stepped up and are providing unwavering support on all levels. Having events such as Erika's death can also seem to bring a "shaking" to your reserves, nevertheless, you carry on.

There is probably no "measure" to say what your support means to Kerry - she seems determined and tough - and with you by her side, I am sure that she will continue to fight.

Theresa, you are right in taking things at your pace in terms of dose reductions and delays in treatment - if this helps you to achieve what you need to, then in balance, its absolutely worth it. And I would agree with your thoughts to Keith about Kerry potentially having a dose reduction if needed. Keith, this is something which her oncologist will be mindful of. Dose reductions are pretty common throughout a course of chemotherapy.

As Theresa has reminded you, you can ask (or rather Kerry can ask), for a longer delay before treatment or an extra week off if she feels she needs it. Most of the time, oncologists will be happy to accommodate a persons wishes, for example, if there is a special event or something and the person doesn't want to be mid-chemo during this.

We know the true heroes are those battling this disease on a daily basis.

We hope that you can find some moments of respite and happiness during this time.

All our best wishes,

Jeni & the nurses.

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

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Tue Feb 26, 2019 10:07 pm

Nurse Jeni and the Nurses

Thank you so much for the kindness you have shown to me and all of the other patients and their families and friends. I love this friendly little forum so much. I pass on every little bit of encouragement and every good wish from everybody here.

We've had round 3 and fingers crossed, Kerry is much less affected this time. She is experiencing some side effects like chilly extremities and mild nausea, but apart form that she has bounced back very quickly this time and is more like her old self.

Thank you Theresa for the suggestion about dosage reduction. I think we would have to seriously consider it if Kerry suffers as much as she did, certainly with the first round, which essentially left her housebound and only able to travel in a wheelchair. That really was the worst time yet in terms of treatment and quality of life. She is a tiny little thing with tiny little veins and those blood clots left her in so much pain.

But, onward and upward. Life is almost normal (new normal!) again and we pick up ourselves up and keep on keeping on!

Good luck and best wishes to all.

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: This cruel disease

Postby PCUK Nurse Jeni » Wed Feb 27, 2019 4:33 pm

Dear Keith,

Your response is most humbling, and of course, it is an honour and privilege to be able to support any of you in a small way.

Good to hear things have not been so bad this time around.

Keith, has anyone ever considered placing a line for Kerry? Or does she already have one? it would really help with the vein access.

Let us know and we can provide more information.

Best regards,

Jeni

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

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: This cruel disease

Postby Dandygal76 » Thu Feb 28, 2019 11:32 pm

Hi Keith - I have accidentally caught up on your thread when researching a complaint I have re my fathers treatment privately (removed - moderator). I just wanted to say that our GP got dad's Ca-19 markers for us. We were close to our GP but it is available outside of the hospital (and privately). My dad is two years passed now. Enjoy your time with your lovely daughter, with age on her side you have hope of many good things yet. x

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: This cruel disease

Postby Theresa Upton » Mon Mar 11, 2019 6:56 pm

Hi Keith, how is Kerry doing?

Theresa

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Mon Mar 11, 2019 7:35 pm

Hi All

Kerry is doing OK overall I think. The side effects are not as harsh as the first two rounds, although she now experiences neuropathy for the first couple of days after a dose and has to avoid the cold like the plague. We have bought numerous things to keep her wrapped up warm and safe. She doesn't like not being able to go out as much whilst it's really cold but she understands why she can't. It does get her down though. Also her mouth gets very sore with ulcers and oral thrush so eating is problematic for a few days after chemo day.

No more blood clots so far though which was of great concern after the first dose.

The first staging scan since she started Folfirinox is this week (Thursday). Then we all panic quietly and experience the dreaded scanxiety whilst we await the results. We will hopefully have them in time for the clinic appointment next Tuesday, although we have been warned that there is a backlog of scan results which is delaying things for some people.

I will let you know whatever news we get as soon as we get it.

Fingers crossed!

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Mon Mar 11, 2019 7:40 pm

Dandygal76 wrote:
> Hi Keith - I have accidentally caught up on your thread when researching a
> complaint I have re my fathers treatment privately
> (Removed - moderator). I just wanted to say that our GP got dad's Ca-19 markers for
> us. We were close to our GP but it is available outside of the hospital
> (and privately). My dad is two years passed now. Enjoy your time with
> your lovely daughter, with age on her side you have hope of many good
> things yet. x


Dandygal76, that is so kind. We are enjoying everything as much as we can. With a year gone already I think we would all like time to slow down! Things will improve when the weather warms up. Kerry is an outdoor person and a "do-bee" by nature. She hates sitting in and twiddling her thumbs.

She has been so strong and resolute throughout all of this and she is as determined as she was on day 1 to fight as hard as she can for as long as she can.

We need the sun to shine for a few days!

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: This cruel disease

Postby Theresa Upton » Mon Mar 11, 2019 8:03 pm

I am so pleased Kerry is tolerating the chemo. Please let us know how the results go
My thoughts and best wishes are with you. X

Theresa

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: This cruel disease

Postby KeithKerry » Tue Mar 19, 2019 9:31 pm

So, here I am, writing one of messages that I knew I would have to write sooner or later.

The Folfirinox is not making any difference. I had already worked that out and so had Kerry. She has lost so much weight since January. Whereas with the Gemcitabine she was able to carry on as normal, she has been unable to do so on this treatment. She has tried so hard, and still has the will to fight, but not the physical strength.

There has not been much growth, but there has been some and she has a clot in her pulmonary vein. Probably from the clots that formed in her legs after the first dose of FolFox. Possibly due to the chemo, possibly due to the disease.

The best we can hope for now is that ceasing the Folfirinox will allow her to gain some weight and some strength back so that she can be considered for another trial, or for another few cycles of Gemcitabine. Currently she is too weak and too poorly for anything at all. Her quality of life is awful and she knows it. It has pretty much been that way since she started this second line treatment in early January.

Whatever happens now, we know that she has tried her hardest for one day short of one year to carry on fighting. What we want now is for her to have some quality of life back and then take it form there.

PCUK Nurse Rachel R
Posts: 61
Joined: Thu Jan 25, 2018 10:52 am

Re: This cruel disease

Postby PCUK Nurse Rachel R » Wed Mar 20, 2019 11:04 am

Hi there KeithKerry,

I’m sorry to be reading your post. You must all be incredibly sad and disheartened that despite what she has gone through your Daughter’s treatment has not had the impact you and all of us on the forum were hoping for. I just wanted to let you know that we are thinking of you and offer a hand of support or a listening ear. You have such a brave and inspiring Daughter and I’m sure she will keep on fighting a much as she is able. I really hope this time off from chemotherapy can allow her to regain some strength so that she can begin to find some enjoyment in things day to day.

Do let us know if we can help in any way.

Thoughts with you all,

Rachel

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

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: This cruel disease

Postby Theresa Upton » Wed Mar 20, 2019 7:17 pm

Oh Keith I am so sorry to read your post. I hope that Kerry picks up and is able to continue with some level of treatment, folifirinox is such a tough treatment. Kerry comes across as being a brave young woman, I wish Kerry, you and your family the strength needed to keep going. Good luck to you all. X

Fernack45
Posts: 17
Joined: Mon Dec 03, 2018 6:26 am

Re: This cruel disease

Postby Fernack45 » Wed Mar 20, 2019 8:02 pm

So, so sorry to read this. Kerry has really taken PC by the scruff of its neck and given it a right ragging. Your daughter is an absolute inspiration as I know you are aware.. I hope she does too. Wishing you all peace and strength at this tough time xxxxx