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PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby PCUK Nurse Jeni » Fri Dec 13, 2013 10:37 am

Hi Guys,

Thanks for all the postings regarding different routes for treatment, and Mike, I hope the night away was splendid!

Can I please take this opportunity to clear up a few things about Nano-knife? As you are probably aware, the UK is heavily governed in medicine by evidence based practice. This is what determines what treatments you will be able to have, what works, what is licensed by NICE (all important!!) etc...The problem with Nanoknife is that it has mainly been used in the USA, which is NOT governed so tightly by evidence based practice, and anyhow, everyone pays for what they have, so you can have whatever is going! Nanoknife has had research done on its safety, and this has been positive, in that the treatment is safe to use, especially where there is a skilled professional carrying it out. This went to NICE consultation in the UK, and NICE basically said it could be used in the context of a clinical trial only (for NHS patients). Obviously, you can have it privately if you are in a position to do so, and it is also covered by health insurance.
Until we have some sort of clinical trial with efficacy data, hands are going to be tied NHS wise in using this. Amanda, you say that you now know that the hospital had Nanoknife available on the NHS? I have been in contact recently with the Nanoknife contact in the UK, and there are plans to put some machines in a small number of bigger hospitals across the UK - some of this has already started, but the criteria might be different, for example, at one hospital is strictly for use in a prostate trial. There may be some cases where this can be used on pancreatic cancer patients, but remembering, this is new technology in the UK at least and practitioners will need training on using the machines etc...The exact ins and outs of who will get to be treated by this I can't say, as I know that it will be open for all cancer patients.

I also know that there is great interest in trying to make this treatment more widespread. Pancreatic Cancer UK is really keen to help make sure that pancreatic cancer patients have access to any treatment that shows promise and that data is collected so that we have the evidence that is needed to either rule these treatments out or make them available to everyone on the NHS. We are looking at how we can do this and I will make sure we post updates on the forum about progress. We hope that there will be a positive outcome, so watch this space.

Jeni.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby Slewis7313 » Fri Dec 13, 2013 11:03 am

Hi Amanda, I am so pleased to hear that David is doing well especially as such a young family. It looks as though you have had to steer a tricky course with little support, but you have made the right decisions when needed. I can't match Mike's 47 years just yet, but Margaret and I did manage 40 years on Tuesday, though there was role reversal with me pushing out the zzzzz's whilst Margaret ensured the champagne bottle was empty! It was particularly poignant as 12 months ago I was certain we (I) would not make it this far.

Good luck to David with the next surgery and enjoy your Xmas celebrations..... We certainly intend to!

Steve
X

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby PCUK Nurse Jeni » Fri Dec 13, 2013 11:09 am

Congratulations Steve and Margaret on 40 years marriage! Amazing!

Yes Steve - remember those days last year. What a whirlwind of a year, but as you say, you have made it thus far - long may it continue!

Have a great Christmas all of you.

Take care,

Jeni.

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

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby J_T » Fri Dec 13, 2013 4:15 pm

Happy Ruby Wedding Anniversary Steve and Margaret xxx

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

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby InfoForMum » Fri Dec 20, 2013 10:46 pm

So, so heartened by this whole thread m'dear. We fought and won a battle with our oncologist and surgeon to have them agree to still leave surgery on the table as an option post Nanoknife. There's chapter and verse in my thread, but we had a harsh week or so getting from "only try nanoknife if you have given up on surgery" to this point. Now we have a debate about chemoradiotherapy. No-one, including Heidelberg will try surgery if you haven't gone through it, but against the background of most recent trials no-one, including the chap who'd do it would give mum more than a 50% chance of still being operable at the end of it.

Another battle for another day, but for now we're also looking forward to Christmas, with Mum treatment free for a wee while, all her grandchildren happying turning her house upside down and her son in law who volunteered as chef for the day soon to find out what he let himself in for in the house of a woman who rules that cooker with a rod of iron.

Take care and I hope you, he and the girls have a fantastic time. My girls are 4 and 7 so know how super special christmas is with them that age :-)

Sarah
XXX

Tas
Posts: 3
Joined: Mon Jun 15, 2015 8:25 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby Tas » Tue Jun 16, 2015 12:41 pm

Hi Amanda,
Just wanted to ask how your husband is doing now?
Regards,
Tas

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby sandraW » Tue Jun 16, 2015 1:19 pm

Hi Taz,
I think you will find if you look through Amanda's posts you will see she started another thread, and that she sadly lost David in January 2015. take care sandrax

Tas
Posts: 3
Joined: Mon Jun 15, 2015 8:25 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby Tas » Tue Jun 16, 2015 6:43 pm

Thanks for letting me know Sandra.

Dear Amanda,
My heart goes out to you and your little girls. May God give you strength in this tough time. And may you never have to face any tough time ever again.
take care,
Tas

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby Marieb » Tue Jun 30, 2015 7:41 am

What an inspiring story. I am Newly starting out on my journey of fighting this foul disease (I am 45 and have 4 children) and need all the hope and information I can get. Thank you for sharing. Marie

creonqueen
Posts: 1
Joined: Wed Oct 03, 2012 2:57 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in

Postby creonqueen » Thu Nov 05, 2015 5:21 pm

In defence of the NHS, they saved my life at Southampton Hospital - having been given the inoperable, incurable, palliative care only card at my local hospital. The PLANETS team at Southampton specialise in extreme surgery and will do things that other hospitals would not consider. Admittedly, Southampton only came to hear of me because of an email I sent!
You are entitled to a second opinion under the NHS.
You can find my story under Rarer types/Susan

Rachelneal
Posts: 2
Joined: Sun Nov 04, 2018 12:44 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

Postby Rachelneal » Mon Nov 05, 2018 9:55 am

Just wondering how things were now? I know its a few years on. X

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

Postby sandraW » Mon Nov 05, 2018 10:31 am

Not sure who you are asking the question of sandrax

KeithKerry
Posts: 33
Joined: Fri Apr 13, 2018 8:44 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

Postby KeithKerry » Tue Nov 06, 2018 8:14 pm

If anyone can share any information about experiences they know of with Heidelberg, or how anybody would go about contacting the right people to set things in motion, I would be eternally grateful. I have to explore every possibility for my Daughter.

boa
Posts: 129
Joined: Thu Jul 09, 2015 1:13 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

Postby boa » Wed Nov 07, 2018 8:08 am

It's a long time since I posted here but as an 'old stager' I can maybe help. I don't have a view or experience on Heidelberg. However, it is worth reading a thread here entitled 'Mum of 42 recently diagnosed with inoperable PC' by Ruthus. It commences on 28 November 2015. It is in Patient Experience and I found it easily this morning.
I think for Heidelberg itself this is what you are looking for https://www.heidelberg-university-hospi ... as-center/.
I hope that helps.

toodotty
Posts: 126
Joined: Sat Jun 09, 2018 4:17 pm

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

Postby toodotty » Wed Nov 07, 2018 1:11 pm

It is a rather sad state that we are still having to explore routes abroad because they are still not available in the UK. This post started how long ago, 6 years? and nothing has changed over here. Re Heidelberg, they are also on my radar, my mother is German and the German relatives have done much research on my behalf. Heidelberg seems the 'go to place' in Germany and Dr Bulcher is a leader in this field, the Germans are also prepared to take more risks (within reason) to give people hope. Certainly when I sent my original scans after being diagnosed Stage IV in March, they were very efficient. I said I was exploring surgery and within one week they had come back with get straight onto Folfirinox and we will review after 6 or 12 cycles to see if this is possible. So, not "go away you haven't a chance!, but it is not an easy choice. However, having spent a lovely evening with a bunch of Whipple survivors (some more than 7 years), believe me you wouldn't have thought that they were ill as they tucked into their 3 course dinner and wine! At the moment I am looking at open nanoknife which may give similar benefits but be less invasive. Who knows …..

Erika