Folfirinox side effects

hello margo

we are in Glasgow, you will find its called 5-FU in the UK that will be why you have been struggling to find it in London, its my sister who had her whipple in january 2010 for PC stage T3 and also a growth on her duadenium stage T1, she had started on gemzar but had a bad reaction to it and only had it for 2 months then started on 5-FU for the remainder of her 6 months chemo which she tollerated alot better

she did have clear margins but was advised to get 6 months of chemo as a 'mop up job' as her surgen called it

she had her surgery in Glasgows Royal Infirmary and chemo at the beaston in glasgows Gartnavel gen hospital

i havnt a clue why they call it 5-FU instead but when my sister went though her scare with chemo she had been told there were only a couple of options for chemo, those 2 being the only 2 mentioned,

She has been back at work for a while now (RM Nurse) but had a parralisezed bowel and other issues with tieredness, the last time she tryed to get signed off the local doctor refused for a few weeks as she was shocked at her weight loss and general looking shattered all the time, she has since returned again but it hoping to get offered redundancy or early retirement, something she would have fought against this time last year, she is only 42 but the surgery has taken it toll mentally and physically 

if there is anything you would like to ask if i dont know i am with my sister daily and ask her to reply to you

GB Clare

My dad is finishing up his first round (chemo tx #5) of gemzar. I have been reading about this Folfirinox on this blog and then googled it. I just assumed it was already in the US. I am going to check with our doc.

On Nov 13, 2011 12:36 AM marmorado wrote:

Which hospitals are already using Folfirinox. I can't find any - not even any clinical trials that are going on. Maybe my search strategies aren't effective.

Any adivce

Hi,

My dad was just diagnosis two months ago with stage 3 pancreatic cancer due to vein involvement.  He is currently using Folfirinox at Barnes Siteman Center in St. Louis Missouri.

thanks,

Lisa

Yes, they are using this in the U.S. also.  My husband had Gemzar treatments for six months following his Whipple surgery in September 2009.  He was diagnosed as stage IIB and got clean margins on his tumor, however, some cells were found in his lymph nodes.  In January they found spots in his lungs that turned out to be metastatic cancer.  He went back on a combination of four different chemo drugs, one of which is Folfirinox.  His last scan in September showed the tumors in his lungs have shrunk by 50%.  Next scan will be sometime in December.

Cindy

The Folfirinox regimine in my wife's case consists of the following: Camptothecin-11, Leucovorin and oxaliplatin introduced during the first 4 hours of infusion at the treatment center in Campbell, California (45 minutes south of San Francisco) with infusional 5-fluorouracil in a ball for the next 42 hour continuous infusion from home through a med-port device surgically placed above her chest once every other week. 

Hi Cindy,

Sorry to hear that your husband had a setback but it sounds as if you are having the right things done. It sounds as if he is making remarkable improvements! Please keep us posted.

We so appreciate your response and generosity.

Margo

Thanks Margo.  He's feeling pretty good right now, but he does get tired easy.  I suppose that's to be expected with the chemo he's getting.  I am just thankful that's the only real side effect he is having.  He actually went out and hiked a short distance in the mountains with me today, which made him really happy.  

I'll let you know how his next scan goes in December.  Praying for good news.

Cindy

On Nov 14, 2011 12:47 AM claretea wrote:

hello margo

we are in Glasgow, you will find its called 5-FU in the UK that will be why you have been struggling to find it in London, its my sister who had her whipple in january 2010 for PC stage T3 and also a growth on her duadenium stage T1, she had started on gemzar but had a bad reaction to it and only had it for 2 months then started on 5-FU for the remainder of her 6 months chemo which she tollerated alot better

she did have clear margins but was advised to get 6 months of chemo as a 'mop up job' as her surgen called it

she had her surgery in Glasgows Royal Infirmary and chemo at the beaston in glasgows Gartnavel gen hospital

i havnt a clue why they call it 5-FU instead but when my sister went though her scare with chemo she had been told there were only a couple of options for chemo, those 2 being the only 2 mentioned,

She has been back at work for a while now (RM Nurse) but had a parralisezed bowel and other issues with tieredness, the last time she tryed to get signed off the local doctor refused for a few weeks as she was shocked at her weight loss and general looking shattered all the time, she has since returned again but it hoping to get offered redundancy or early retirement, something she would have fought against this time last year, she is only 42 but the surgery has taken it toll mentally and physically 

if there is anything you would like to ask if i dont know i am with my sister daily and ask her to reply to you

GB Clare

5-FU (Fluorouracil) is only one of four ingredients in Folfirinox - it's not the same!  Seehttp://www.nelm.nhs.uk/en/NeLM-Area/News/2011---May/12/FO

I don't believe you can get Folfirinox on the NHS - you have to go private. Which is why they don't talk about it much in the NHS...

Good luck with everything!

Aston

On Nov 13, 2011 3:37 AM claretea wrote:

hi

we are in the UK marmorado x

GB Clare

 

5-FU (Fluorouracil) is only one of four ingredients in Folfirinox - it's not the same, as you have been incorrectly advised by someone! Seehttp://www.nelm.nhs.uk/en/NeLM-Area/News/2011---May/12/FO

I don't believe you can get Folfirinox on the NHS - you have to go private and it's very expensive- not much change from £30 or £40k for a complete treatment. Which is why they don't talk about it much in the NHS...

Good luck with everything!

Aston

hi

i had read it on the boards that it had been the same sorry if i have caused confusion, i was only trying to help other UK posters, as for the NHS not paying for the chemo @ £30 or £40k my sisters surgery cost the NHS over £100k alone with 3 teams of surgens and a 12 hour surgery, they sure as hell are not gong to skimp on her chemo if it means the difference between life and death, they did not skimp with any of her treatment and she received the best  NHS or private her treatment was the same??

she is doing well thankyou for asking

clare