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Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Irinotecan hydrochloride nanoliposomal injections

Postby Dandygal76 » Mon Oct 31, 2016 9:56 pm

Okay, I was looking at a spreadsheet from NICE this week that indicated this will be licensed in UK from January (note to everyone this was licensed in US last year - how disgraceful).

I need experiences as I think this is in private healthcare here... (W&M please be reading this in case). So a) I need personal experiences if they are out there b) I want to know is the 6.1 median survival from the point of 2nd line treatment or is it from the start of PC c) is this something to be considered with dad instead of Furry Fox.

PCUK nurses... would love some input on this. I think dad is going to come off the trial in December... he wants to nuke the blasted thing and not wait for growth. The trial sort of said it would be good time to step away as it can become immune to current treatment and if he steps away now he can come back later. They have someone who is 8 months on with no progression and no treatment. Dad is not there though to take that risk, he wants nano and so cannot go back to the trial. I think we will ditch trial in December after scan (if just stable... we will not do this if shrinking). Oh, I think I forgot to say properly last scan outcome we have stable disease sort of... a couple of mm shrinkage but who knows who was reading the 'difficult to read' scan this time. I will pay for a second opinion this week from professor nano.

I know my dad and I am pretty sure we are about to say goodbye to Sarah Cannon. This is fine of course, think outside of the box and be bold... what the hell else is there to lose. I just feel that the PC life is steering away from the furry fox?

To get a different outcome, we need to think differently. I am torn on what to advise my lovely dad. I think my head is stuck in folfirinox as there have been some great outcomes and I am scared to 'think differently'. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Wife&Mum » Mon Oct 31, 2016 11:53 pm

Hey DG,
b) the 6.1 median survival is from the point of the 2nd line treatment.
c) the ASCO practice guidelines (see https://pilotguidelines.atlassian.net/w ... w/68091910) recommend that first line Gem/Abrax be followed by 2nd line Fluorouracil plus oxaliplatin, irinotecan, or nanoliposomal irinotecan (recommendation 3.2). This concoction is similar to, but not the same as Folfirinox. I don't know the rationale behind it but maybe your oncologist can advise.

W&M xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Wife&Mum » Tue Nov 01, 2016 12:11 am

Oh and " irinotecan hydrochloride nanoliposomal injections" is another name for Onivyde which has its own short thread earlier in the Treatments forum. Don't know if there's an easy way to merge the two threads to save confusion? (this question is addressed to DG and/or the mod).

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Dandygal76 » Thu Nov 10, 2016 12:11 am

Few W&M... I thought I had almost made up the whole thing but here is what I was looking at as evidence of launch in Jan 2017. I am not saying it won't slip but NHS are starting to budget for it.

https://www.sps.nhs.uk/articles/prescri ... t-version/

DG

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Wife&Mum » Wed Nov 16, 2016 10:13 pm

Latest on this new treatment is very worrying:

"NICE set to reject treatment for use on the NHS in England"

See more at: http://www.pancreaticcancer.org.uk/1406 ... Q4uzy.dpuf

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Dandygal76 » Wed Nov 16, 2016 10:59 pm

I will look into this more tomorrow as just got in... it is very disappointing if this is the decision. Perhaps I will try an online petition but I have seen some around for Abraxane that do not go far. Maybe worth a try though... what is there to lose. x

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Dandygal76 » Thu Nov 17, 2016 8:03 am

I hope people on this forum and those reading this will take the time to respond to the consultation documents and argue the case for Onivyde. NICE consultation page can be found here....

https://www.nice.org.uk/guidance/indeve ... ml-content
Last edited by Dandygal76 on Thu Nov 17, 2016 12:09 pm, edited 1 time in total.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Wife&Mum » Thu Nov 17, 2016 10:40 am

It's World Pancreatic Cancer day today. How sad that NICE is once again poised to deny a new treatment to PC patients in NHS England. First Abraxane, now Onivyde. Plus there's the lack of support from NICE for NanoKnife. Talk about kicking people when they're down.

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Dandygal76 » Thu Nov 17, 2016 12:07 pm

W & M I have posted the consultation page in every nook and cranny on the internet and forums I can find and I am still going. I know they say #wagehope but today it is #wagewar!

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Wife&Mum » Thu Nov 17, 2016 12:30 pm

Good for you!!!

Support Team
Site Admin
Posts: 118
Joined: Fri Sep 23, 2005 2:50 pm

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Support Team » Fri Nov 18, 2016 3:43 pm

Hi all,

Pancreatic Cancer UK is preparing responses to current consultations about Onivyde and will be considering all comments on this thread when doing so, so please keep them coming.

Kevin Armstrong
Head of Policy and Campaigns (Maternity Cover)

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Irinotecan hydrochloride nanoliposomal injections

Postby Wife&Mum » Sun Nov 20, 2016 9:51 am

Hi Kevin, I'm very disappointed by this new recommendation from NICE as it's another step on the path to England becoming a backwater for PC treatment. Compared to other European countries our survival rates are already poor and we're going to be left further and further behind.
I do appreciate that there are cost and value for money considerations and if it was a choice between Abraxane and Onivyde I would choose Abraxane. Abraxane is now standard of care elsewhere and I think it's shocking that it's still not available in England. One of the reasons for the NICE Onivyde ruling is that the trial comparator was 5- FU/LV and this is not standard of care in 2nd line treatment here. I literally gasped when I read this in the NICE report as WE DON'T EVEN HAVE A 2ND LINE STANDARD OF CARE. And that's partly due to people being denied Abraxane for 1st line.

A very cross W&M.