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Re: Folfirinox- seems to be working!

Posted: Sat Jan 04, 2014 9:15 am
by Bee
Hi Nikki,

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

Bee xx

Re: Folfirinox- seems to be working!

Posted: Sat Jan 04, 2014 10:54 am
by EmmaR
Hello Nikki,
What a great job you are doing for you man !
Love and hugs to you both xx
EmmaR

Re: Folfirinox- seems to be working!

Posted: Sun Jan 12, 2014 11:31 pm
by Bee
Hi Nikki,

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

Fingers crossed all is going to plan !

Bee xx

Re: Folfirinox- seems to be working!

Posted: Mon Jan 13, 2014 9:22 am
by nikkis
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

Abraxane - still to be convinced.

Posted: Sat Jan 25, 2014 9:31 pm
by nikkis
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

Re: Folfirinox- seems to be working!

Posted: Sat Jan 25, 2014 10:15 pm
by Bee
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

Re: Folfirinox- seems to be working!

Posted: Sat Jan 25, 2014 10:25 pm
by InfoForMum
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

Re: Folfirinox- seems to be working!

Posted: Sun Jan 26, 2014 10:35 am
by Cathy
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

Re: Folfirinox- seems to be working!

Posted: Sun Jan 26, 2014 8:19 pm
by nikkis
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

Re: Folfirinox- seems to be working!

Posted: Sun Jan 26, 2014 9:29 pm
by InfoForMum
YEY for the bright spots in this rocky journey and creds to the offspring. Enjoy hon.

Sarah
XXX

Re: Folfirinox- seems to be working!

Posted: Sun Jan 26, 2014 10:14 pm
by J_T
Nikki, great to hear Paul's pain is more under control. Enjoy the wine!

Julia x

Re: Folfirinox- seems to be working!

Posted: Sun Jan 26, 2014 10:22 pm
by EmmaR
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

Re: Folfirinox- seems to be working!

Posted: Mon Jan 27, 2014 8:05 pm
by nikkis
Thank you all.
Emma your words really touched us, as that is what we are doing as a family, cherishing each other,
Nikki

Re: Folfirinox- seems to be working!

Posted: Mon Jan 27, 2014 9:58 pm
by Cathy
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

Re: Folfirinox- seems to be working!

Posted: Mon Jan 27, 2014 11:07 pm
by nikkis
Hope it goes well on Wednesday Cathy, I know you will give Jonathan the send off he deserves. Will be thinking of you,

Nikki