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Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Folfirinox- seems to be working!

Postby Bee » Sat Jan 04, 2014 9:15 am

Hi Nikki,

Great to hear the hospice has helped and that you have a new plan, onwards and upwards.

Bee xx

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Folfirinox- seems to be working!

Postby EmmaR » Sat Jan 04, 2014 10:54 am

Hello Nikki,
What a great job you are doing for you man !
Love and hugs to you both xx
EmmaR

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Folfirinox- seems to be working!

Postby Bee » Sun Jan 12, 2014 11:31 pm

Hi Nikki,

Just wondering how things are going and if Paul is home yet?

Fingers crossed all is going to plan !

Bee xx

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

Re: Folfirinox- seems to be working!

Postby nikkis » Mon Jan 13, 2014 9:22 am

Hi Bee,
Still officially in the hospice, but most days he comes home once they have reviewed his meds. Hopefully we are getting there with the pain, the hospice are determined to crack it! New chemo on Wednesday so that may help.
Hope you are doing ok,
Nikki

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

Abraxane - still to be convinced.

Postby nikkis » Sat Jan 25, 2014 9:31 pm

Thought it was time to post an update. Paul has had one gemcitabine with abraxane, due the second next Wednesday. The plan is for him to have 3 and then scan again, and see if he is feeling any better, as pain and vomitng can still be an issue. He is still officially in our local hospice, but we come and go, home most of the item, and off to London for chemo.

The problem is that Paul had nausea for 8 days post chemo ,when this only lasted for 4 days post folfirinox. The hospice docs have been relentless in trying to help with this, but nothing has really helped. Something Sarah said in her post resonated with me, about doctors not being will to pick up a book Or a phone. We see a team of doctors at the hospice and they have all researched abraxane as they hadn't any previous knowledge of this. They also read every letter written about Paul, to have a better understanding of what is going on, and talk to each other,amazing, if only it was always like this. We have had private and NHS care and it had never come close to this standard ,why not? Their feeling is that if the abraxane continues to make Paul feel this rough, it's benefits are outweighed by the side effects,but they support us in whatever we want to do.
So we shall see how the next one goes.

Take care all,
Nikki

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Folfirinox- seems to be working!

Postby Bee » Sat Jan 25, 2014 10:15 pm

Hi Nikki,
Good to have an update was wondering how you were getting on.
Sorry to hear about the nausea, fingers crossed it improves. I am so glad to hear you are getting fantastic care from the hospice, ours was amazing.
Keep us posted and don't forget about you in all of this!

Bee xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Folfirinox- seems to be working!

Postby InfoForMum » Sat Jan 25, 2014 10:25 pm

Same as Bee said Nikki, every word. Take 5 minutes to try and clear your head whenever you can and remember you're doing all you can. I wish paul peace and control over that pain and hope he has some good rest.

Sarah
XXX

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

Re: Folfirinox- seems to be working!

Postby Cathy » Sun Jan 26, 2014 10:35 am

Hi Nikki

Ditto the others.

Having so very recently tread on this path I know how exhausting it can be fighting to get things sorted. Great the hospice doctors seem on the ball and concentrating on getting things sorted for Paul. Lets hope so and that the chemo helps with symptom control.

Cathy xx

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

Re: Folfirinox- seems to be working!

Postby nikkis » Sun Jan 26, 2014 8:19 pm

Thank you my lovely ladies, the pain seems to be under control, thanks to a subcutaneous buscopan infusion which has proved more effective than morphine for Paul's pain, which has surprised everyone.
My 14 year old is a keen cook, so I get to put my feet up with a glass of wine and eat well, a win/win situation!
Nikki

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Folfirinox- seems to be working!

Postby InfoForMum » Sun Jan 26, 2014 9:29 pm

YEY for the bright spots in this rocky journey and creds to the offspring. Enjoy hon.

Sarah
XXX

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

Re: Folfirinox- seems to be working!

Postby J_T » Sun Jan 26, 2014 10:14 pm

Nikki, great to hear Paul's pain is more under control. Enjoy the wine!

Julia x

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Folfirinox- seems to be working!

Postby EmmaR » Sun Jan 26, 2014 10:22 pm

Wine and food what more could a girl want !! and Paul having respite from his pain cherish your 14 year old with every fibre of your being which I am sure you are .
Love to you all .
EmmaR x

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

Re: Folfirinox- seems to be working!

Postby nikkis » Mon Jan 27, 2014 8:05 pm

Thank you all.
Emma your words really touched us, as that is what we are doing as a family, cherishing each other,
Nikki

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

Re: Folfirinox- seems to be working!

Postby Cathy » Mon Jan 27, 2014 9:58 pm

Hi Nikki

Thinking of you lady and your lovely man. So good to hear about pain relief. It is terrible to see someone you love in pain.

We're right behind you!

Cathy xx

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

Re: Folfirinox- seems to be working!

Postby nikkis » Mon Jan 27, 2014 11:07 pm

Hope it goes well on Wednesday Cathy, I know you will give Jonathan the send off he deserves. Will be thinking of you,

Nikki