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Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Update - stabilised tumour after folfirinox

Postby Annie14 » Wed Mar 26, 2014 4:04 pm

Hello everyone!

I just wanted to update you all! My husband was diagnosed with inoperable PC in November 2013 and has just finished his 7 cycles of folfirinox! The scan results following this have shown a stabilisation in the tumour and his cancer markers have come down from over 1000 to around 100! He is going to have another six treatments before other options explored! He feels great and has put on weight, still working and managing the side effects which haven't been too bad! We'd take this for awhile longer considering how we felt the day he was first diagnosed!

Hope you are all well!

Fiona

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Update - stabilised tumour after folfirinox

Postby Cathy » Wed Mar 26, 2014 4:28 pm

Hi Fiona

Fantastic news! I am really pleased for you both. :)

Cathy xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Update - stabilised tumour after folfirinox

Postby nikkis » Wed Mar 26, 2014 4:34 pm

Dear Fiona,
I was just wondering yesterday how you and Jim were doing, so glad to hear that everything is going to plan, and Jim continues to feel so well.
Best wishes to you both,
Nikki

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Update - stabilised tumour after folfirinox

Postby jay » Wed Mar 26, 2014 5:03 pm

fantastic news Fiona xxx

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Update - stabilised tumour after folfirinox

Postby Annie14 » Wed Mar 26, 2014 6:03 pm

Thanks very much everyone!!! We are really pleased and Jim just glad the hiccups, lock jaw, cold sensitivity and dodgy tummy have been worth it :-)

We even had a bottle of champagne last night! Friends and family don't seem to understand that "staying the same" is a real victory! Perhaps at the back of their minds they still don't appreciate pancreatic cancer is not like the others but hopefully our positivity about the results rubs off on them and that miracles are unlikely.....although we will keep trying, just invade they do!

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Update - stabilised tumour after folfirinox

Postby Annie14 » Wed Mar 26, 2014 6:09 pm

On a side note - we are thinking of looking into nanoknife after the next six folfirinox rounds. Has anyone on here had it and do you know what the requirements are with regards to health and tumour location & size! Also will they do it if the spots on his spleen and liver have not gone away?

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Update - stabilised tumour after folfirinox

Postby sandraW » Wed Mar 26, 2014 7:44 pm

Hi Fiona
What great news and it also gives me hope for my husband Trevor, he had surgery in Sept 2013 and had 2/3rds of his pancreas and spleen removed, he then had 6 cycles of 5 fu unfortunately his tumour markers rose to 1990 so they gave him a scan, which showed 2 very small lesions on his liver. They switched his chemo to folfirinox, he has had 4 now and is expecting to have 2 more, before another scan, so hopefully we will get some good news too.
He too is eating well and apart from feeling tired his only real side effect is the cold sensitivity, take care sandrax

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Update - stabilised tumour after folfirinox

Postby J_T » Wed Mar 26, 2014 9:23 pm

Hi Annie, great news about Jim!

Yes, others have had nanoknife treatment, just put 'nanoknife' in the search box.

Fifi

Re: Update - stabilised tumour after folfirinox

Postby Fifi » Wed Mar 26, 2014 9:52 pm

Wonderful news. At the very beginning, I too would have though staying the same wouldn't be great news. But now, I know that is great news. My dads last scan was the same as previous. I was very relieved. I tell other family members and they are sorry, and the ' oh no's' come out!

Brilliant news, really good to read.

xx

jules 2015
Posts: 55
Joined: Mon Sep 23, 2013 10:20 pm

Re: Update - stabilised tumour after folfirinox

Postby jules 2015 » Wed Mar 26, 2014 11:36 pm

Hi Fiona
Lovely to hear Jim is doing so well, my advise would be to enjoy every day and do everything you can whilst you can. This terrible disease makes you realise how short life can be.
Julie x

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Update - stabilised tumour after folfirinox

Postby Annie14 » Thu Mar 27, 2014 8:02 am

Thank you everyone for the kind words! We are just enjoying his health and he is certainly making the most of it! He has had us on more holidays & long weekends in the past 3months than I've been on in my whole life! I'm certainly not complaining but my expanding waistline is struggling to cope :-) our daughter starts school in September so trying to fit them all in before then! I'm pleased he has the chance to do all these things as I know how lucky we are - so many people don't get that chance! One step at a time though!

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: Update - stabilised tumour after folfirinox

Postby Ant11 » Thu Mar 27, 2014 2:16 pm

Hi Fiona, this is wonderful news and like everyone else so pleased for you and your family. As you say if only others including friends and family understood this terrible disease. It is a very tough journey with highs and lows but we all keep battling on. Glad you are all doing everything you possibly can and enjoying every day, don't worry about your waistline just enjoy.....

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: Update - stabilised tumour after folfirinox

Postby PCUK Nurse Dianne » Thu Mar 27, 2014 3:35 pm

That is great news Annie. When you are interested to find out some information about Nanoknife, please feel free to be in contact with us. Jeni and I can give you an update on what is happening with Nanoknife.

The current status is: Patient's usually need to be on a course of chemotherapy, both pre and post Nanoknife. The current guidance is that this is used on tumours that are 4cm or less in size. We can guide you through the process and at the time that you may be requiring the information there may be an update on its availability in the UK.

Please don't hesitate to touch base with us if you need some help with this.
Regards,

Dianne
Pancreatic Cancer Specialist nurse
Support Team

Annie14
Posts: 60
Joined: Tue Dec 03, 2013 5:19 pm

Re: Update - stabilised tumour after folfirinox

Postby Annie14 » Thu Mar 27, 2014 6:53 pm

Thank you very much Dianne! We will certainly be in touch to find out more about nanoknife once these six treatments are over! I thought he couldn't surprise me anymore but he actually played golf with some friends today while attached to his bottle and won!!

Sandra - I hope Trevor's scan goes well and he gets an even better result than Jim