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Folfirinox- seems to be working!

Posted: Mon Nov 11, 2013 4:35 pm
by nikkis
Dear all,

Paul had a scan on Friday, after Folfirinox number 7, and have just heard that it looks good. He has a small amount of tumour left after surgery (see previous posts), and there was some in the lymph glands, both of these have shrunk back. His tumour markers have also gone down from 800-1000 to 160. Apart from feeling terrible from the chemo, he generally feels much better, if that makes sense. He has managed to stop his morphine infusion, and the pain is controlled by Abstral tablets. So all really good. Paul, of course, in his positive, determined way, was convinced it could only be good news, while I have been falling apart all weekend!

Still a long way to go though, but just so pleased to be able to pass on some positive news. At times things have looked so bleak for us, and previous scan showed no improvement, but we are fighting back!

Nikki

Re: Folfirinox- seems to be working!

Posted: Mon Nov 11, 2013 4:39 pm
by InfoForMum
Nikki, I'm so pleased! A justification for all the pain and discomfort for him. I doubt either of you are jumping up and down with joy as rough is still rough, but that's just fab!!!

Sarah
XXX

Re: Folfirinox- seems to be working!

Posted: Mon Nov 11, 2013 4:52 pm
by nikkis
Thanks Sarah,
It's this week for your Mum's scan isn't it? Keeping everything crossed for good news for her,
Nikki

Re: Folfirinox- seems to be working!

Posted: Mon Nov 11, 2013 4:56 pm
by J_T
So nice to hear positive stories. So pleased for Paul and you. Brilliant news!

Julia x

Re: Folfirinox- seems to be working!

Posted: Mon Nov 11, 2013 5:26 pm
by PCUK Nurse Jeni
Nikki,

Very good news! Well done Paul!

Jeni.

Re: Folfirinox- seems to be working!

Posted: Mon Nov 11, 2013 10:39 pm
by Bee
Nikki,
Fantastic news, I am delighted for you. Great to have something positive to read about, onwards and upwards!!

Bee xx

Ps. Perhaps you should get another bell with a different tone and he could summon you with a celebratory tune, lol!

Re: Folfirinox- seems to be working!

Posted: Mon Nov 11, 2013 11:14 pm
by belgrade
Brilliant news Nikki, wishing you both well.
Hilary x

Re: Folfirinox- seems to be working!

Posted: Wed Nov 13, 2013 12:24 pm
by Cathy
Hi

Just adding my sentiments to the others.

Well done!!!! You must be absolutely delighted.

It is great to hear some good news :)

Cathy xx

Re: Folfirinox- seems to be working!

Posted: Wed Nov 13, 2013 12:41 pm
by Brian
I know how tough Folfirinox can be, so delighted to hear such good news.

Brian

Re: Folfirinox- seems to be working!

Posted: Wed Nov 13, 2013 1:59 pm
by nikkis
Thank-you everyone for your kind words, it has meant so much to Paul and I. There has been so much sadness recently, I really wanted some good news of hope for everyone. Credit to Paul's oncologist, who gave him Folfirinox post surgery, which isn't the normal first choice. I also think most wouldn't have taken the risk and given it to him when he was so poorly for the first few sessions, but the gamble seems to be paying off so far.

Paul actually got through his first few days post chemo better this time, and I am sure the good news was a factor. Not so great today though (day 6), diarrhoea with a vengeance. Only 5 more to go though. When we started 12 seemed so many, and 6 months such a long time, but the next session comes round so quickly.

One thing he hasn't had, that I have noticed others have suffered with is mouth problems. He drinks on average 2 bottles a day of Bottle Green, Lemongrass and Ginger. I am spending an absolute fortune on the stuff (possibly more than I do on wine for myself!), so I like to think it has some magic properties that protects his mouth.

And yes, he is still using the bell. Every time I hear it I think I should be in some sort of Downton's maid outfit!

Thinking of you all,
Nikki

Re: Folfirinox- seems to be working!

Posted: Fri Nov 22, 2013 8:09 pm
by nikkis
My daughter did a cake sale with her class today to raise money for Pancreatic Cancer UK. A member of staff, who hadn't realised that Paul had PC, told her that she had it 8 years ago and is doing fine. So great to hear of someone who has beaten it, and especially lovely for my daughter who has come home so positive from her day, and they had made £133!

Nikki

Re: Folfirinox- seems to be working!

Posted: Fri Nov 22, 2013 8:30 pm
by J_T
Wow that is fab Nikki's, a big round of applause to your daughter! Well done mini Nikki's! xxx

Re: Folfirinox- seems to be working!

Posted: Fri Nov 22, 2013 10:11 pm
by InfoForMum
I know what you mean about survivors, it's great to meet them! Well done to your daughter and her class too, great effort!

Funnily enough Mum was her own version of a survivour for someone the other day. She was waiting to start her cycle 5 on Wednesday and was sat next to a really lovely lady who'd just travelled back 70 miles to have her pump disconnected after her first cycle. She was floored when Mum told her how far she was through and they talked through symptoms and symptom control as well as asking to be trained to disconnect pump to avoid all that travel. Apparently she hugged Mum and said she'd made her day.

Mum's now thinking of other ways she can give back.

Still feeling smiley about your great news too Nikki. Feels like corners have been turned for a few folk while still remembering those dealing with loss.

Love and hugs

Sarah
XXX

Re: Folfirinox- seems to be working!

Posted: Fri Nov 22, 2013 10:12 pm
by nikkis
Thank-you Julia,
So proud of both my girls and how they are coping (much better than me!) and any little lift really helps doesn't it?
Nikki

Re: Folfirinox- seems to be working!

Posted: Fri Nov 22, 2013 10:23 pm
by Bee
Nikki,
Well done to your girls, I am sure you are a very proud mum!

Children are just so amazing, another setback for us today ( will update thread), but my two took the latest head on!

Have a good weekend

Bee x