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kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: My mum - Stage 4 PC with liver mets

Postby kate2101 » Fri Dec 21, 2018 3:59 pm

Hi Dianne,

Thanks for your good wishes, who would have thought a year ago I’d be in this position, I didn’t appreciate how simple life was. Looking forward to my trip but also scared stiff! Like Erika, I’m fortunate that my life insurance paid out so I can pay for the treatment without remortgaging or robbing the bank.

It’s been a strange year since my diagnosis in June, a rocky rollercoaster but it’s ending better than I expected. I’m still here, tired but still functioning as normal and looking forward to cooking for my family for Christmas. And of course America in January! I know nanoknife is no magic cure and there are risks but what to lose?

Best wishes to all for Christmas, let’s hope 2019 brings good news and progress for PC sufferers. X

Theresa Upton
Posts: 60
Joined: Thu Oct 11, 2018 4:39 pm

Re: My mum - Stage 4 PC with liver mets

Postby Theresa Upton » Fri Dec 21, 2018 6:38 pm

Good luck Kate, I wish you all the luck in the world and a safe journey.

Enjoy your Christmas break

Theresa

xx

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: My mum - Stage 4 PC with liver mets

Postby kate2101 » Fri Dec 21, 2018 11:59 pm

Thanks very much Theresa. Must admit I’m a mixture of emotions, excited, hopeful, mainly scared but what an adventure! But one I wish I wasn’t involved in. I now have to concentrate on getting as fit as possible and avoid any nasty bugs going around.

Thanks again for good wishes, I’ll keep you posted. Enjoy your Christmas too. X

J9pkr
Posts: 15
Joined: Wed Sep 26, 2018 8:35 am

Re: My mum - Stage 4 PC with liver mets

Postby J9pkr » Wed Feb 06, 2019 9:17 pm

Hi All,

It has been a while since I have written anything here but have been reading your blogs with interest and hope everyone is doing well.
My Mum is not doing too badly we are on the last dose of chemo on the first cycle and will have a CT next Tuesday which will no doubt bring anxiety until we receive the results. Everything is crossed that the the chemo is doing something positive which I know will spur Mum on. Mum is on Gemcitabine and Abraxane and after this dose has experienced a really strong metallic taste along with the usual nausea. Has anyone any experience of this and any suggestions to relieve this side effect?
Best wishes to all. J

Dee123
Posts: 29
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Mon Feb 11, 2019 7:50 pm

Hi all,

Just a quick update on my Mum's CT scan results today after the end of her Gemcitabine and Abraxane chemotherapy.

The pancreas tumour and liver mets have not changed since they reduced in the last scan, so this is good news.

However her lymph nodes have now been mentioned for the first time.

The lymph node in her abdomen has increased in size from 5cm to 16cm. This might explain the pressure/tightness pains she has been feeling in/around her stomach recently.

The next step is to have another scan in 4 weeks to check if the lymph node has increased in size again, if it has she will then move on to Folfirinox chemotherapy. I know this is a more aggressive chemotherapy and she did not want this originally but they have said they can adjust the dosage to what works for her.

If anyone has any tips on how to reduce the swelling of the lymph nodes, any diet tips, or anything else that would be great! I am going to start my research online now to look into lymph node involvement because this is new...

I hope everyone is doing ok xx

J9pkr
Posts: 15
Joined: Wed Sep 26, 2018 8:35 am

Re: My mum - Stage 4 PC with liver mets

Postby J9pkr » Mon Feb 18, 2019 9:26 pm

Hi Dee,

We get Mum’s first scan results tomorrow so we are all anxious tonight. Your post was the first I read after Mum was diagnosed and I remember it giving me some hope as your Mum has just got her first scan results and they were so positive.
So pleased she seems to still be doing well.
Hope the Lymph node treatment is successful.

Janine

Dee123
Posts: 29
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Tue Feb 19, 2019 8:19 pm

Hi Janine, how did the results go?

J9pkr
Posts: 15
Joined: Wed Sep 26, 2018 8:35 am

Re: My mum - Stage 4 PC with liver mets

Postby J9pkr » Tue Feb 19, 2019 9:27 pm

Hi Dee,

We have had amazing news. The tumour on the Pancreas has shrunk so it is barely visible on the scan and the tumours in her liver have halved in size and some have even shrunk completely.
We were given the option of coming off the Abraxane but Mum decided to continue with the dual Gemcitabine and Abraxane for now but may take some more time between doses. We could not have hoped for better news. Thank you for asking xx

Theresa Upton
Posts: 60
Joined: Thu Oct 11, 2018 4:39 pm

Re: My mum - Stage 4 PC with liver mets

Postby Theresa Upton » Tue Feb 19, 2019 9:47 pm

That is brilliant news.

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: My mum - Stage 4 PC with liver mets

Postby PCUK Nurse Jeni » Wed Feb 20, 2019 3:46 pm

Hello Janine,

Thanks for sharing this very good news! How fantastic!

And well done to your mum!

Long may this continue.

Jeni.

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

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: My mum - Stage 4 PC with liver mets

Postby kate2101 » Wed Feb 20, 2019 5:33 pm

Hi Janine,

So happy to hear your good news, love to you and your mum. xx

Dee123
Posts: 29
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Wed Feb 20, 2019 7:54 pm

Hi Janine, that is great news! Gemcitabine and Abraxane seems to work really well in the cases that I have seen. It must be such a relief for you both. Hopefully the next batch will help even more! Xx

Dee123
Posts: 29
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Mon May 13, 2019 10:09 pm

Just a quick update.

My mum last had chemo on 17th January and since then, although her lymph nodes had increased in size slightly, the cancer was stable. So she was given a break from chemo. Throughout this break she had pressure/pain in her abdomen/under her ribs so she wasn't symptom free but it was manageable with pain killers however it got worse as time went on so we knew the next scan would show something.

The cancer has now increased in size on her pancreas and there are a few lesions on her lungs. However the liver and lymph nodes have remained stable.

She is starting chemo again next week, she has been offered Gemcitabane and Capecitabine (GemCap) which they think she would tolerate better than Folfirinox.

I will let you know how it goes.

I hope everyone is doing ok xx

Dee123
Posts: 29
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Sun Jun 02, 2019 10:35 pm

My mum was meant to start chemo again but started having dark urine and pale stools and then her skin and eyes turned yellow and she couldn't hold down any food or drink. She suddenly developed jaundice. It was so quick over a few days and she was rushed to hospital. Watch out for jaundice everyone!

She has just returned from 2 weeks in hospital after having a bile duct stent and then a duodenal stent.

Chemo is now due to start in a few days.

Dee123
Posts: 29
Joined: Wed Aug 08, 2018 8:21 pm

Re: My mum - Stage 4 PC with liver mets

Postby Dee123 » Sat Jun 15, 2019 8:45 am

My mum hasn't started her second-line chemo yet because she was taken into hospital with sepsis (symptoms were fever, increased heart rate, very spaced out/confused and dizzy) but we caught it early and the hospital gave her IV antibiotics and fluids.

She also had another CT scan this week and there is more cancer spread to the liver so they said she needs chemo asap but it depends if she is strong enough.

She has lost so much weight (down to 6 stone) but the doctors said they will adjust the dosage to match her size so it doesn't overwhelm her.

Chemo is due to start next week now.