A forum for advanced pancreatic cancer issues

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WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Any advice will be greatly appreciated

Postby WilliamS » Fri Jul 10, 2015 9:13 am

My Dad's Consultant told us that Nanoknife is available on the NHS but the protocol is that the patient has to be stable on chemotherapy first. There is some info on it here -

https://www.kch.nhs.uk/news/public/news/view/16891

It is also available privately in some hospitals such as the Princess Grace -

http://www.theprincessgracehospital.com ... nanoknife/

Levi1
Posts: 13
Joined: Sat Jul 04, 2015 10:16 am

Re: Any advice will be greatly appreciated

Postby Levi1 » Sun Jul 12, 2015 7:41 am

Thanks very much for the information William, this is something we will defiantly pursue.

This nanoknife treatment seems like such a life line and can give us that extra bit of hope what we need. Of course it's not guaranteed but it's much better than the dull statistics without it.

We spoke to the palliative nurse, she seems to think we should get a date for the biopsy within 10 days (much better than the 3 weeks the consultant said) I'm hoping we can get the wheels turning for chemo too just in preparation for after the biopsy.

Again I'm so thankful for this forum and the nurses for all your help.

Levi x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Any advice will be greatly appreciated

Postby kittycat » Sun Jul 12, 2015 2:07 pm

Hi levi, my husband has arranged to have nanoknife at the princess grace next month, it was previously arranged for 1st July but he was hospitalised and we had to rearrange. We feel that this treatment is the way forward and that we have to go for it as we are pretty desperate with the outlook so bleak for this dreadful disease. We did quite a lot of research and read others experiences on this site which was encouraging and the consultant at princess grace was excellent. Our oncologist has also been very helpful which has made things easier. I see that this is now available on the nhs but we are already booked in privately so will go with that.

Good luck.

Sue

Levi1
Posts: 13
Joined: Sat Jul 04, 2015 10:16 am

Re: Any advice will be greatly appreciated

Postby Levi1 » Mon Jul 13, 2015 5:00 pm

Thanks Sue,

Us as a family feel that nanoknife is the way forward as well. I feel that I've read that much about it now that I could do the operation!

We are going to pursue the nhs route as hopefully as it hasn't spread to the liver we hopefully would be excepted for it. If not then our family will pull together as always and make the private route happen.

Good luck to your husband Sue and please keep me updated on his route on beating this horrid cancer!

Levi x

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

Re: Any advice will be greatly appreciated

Postby Marieb » Sun Jul 26, 2015 12:53 pm

Hi Levi

Just catching up on your posts today as there has been a lot happening on my side of thing.
The last time I posted my EUS had been abandoned as the doc felt continuing was unsafe. Hearing that no biopsies had been taken was hard. However they turned it around very quickly and tried again, 2nd time round with more information and involving the full MDT. Thank fully it was successful and I met with my Oncologist for the first time last week.

I get a Hickman Line fitted and start on Folfirinox on 3rd August (they are saying it inoperable and I have a year) as palliative care. I am determined to prove them wrong and beat this awful disease. I too am looking into Nano Knife and plan to discuss it with my Specialist Nurse on Wednesday.

I hope your mum is making progress and you are keeping strong. I know it's difficult for family and friends. it would be good to hear from you as her case sounds very like mine.

Marie x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Any advice will be greatly appreciated

Postby Didge » Sun Jul 26, 2015 4:02 pm

Marie, we were told that on folfirinox the average prognosis was 11 months but that includes the stats of people who have to stop soon after or have no response. I know you're not anyway, but please see this as an average not a limit. Many people do much better! X

Levi1
Posts: 13
Joined: Sat Jul 04, 2015 10:16 am

Re: Any advice will be greatly appreciated

Postby Levi1 » Thu Aug 06, 2015 10:43 am

Hello all,

Just to update you guys, mums had her biopsy and has confirmed its the adenocarcinoma. She's having a second cat scan today and meeting the oncologist (finally) on Tuesday. They have mentioned chemo radiotherapy but I'm sure we will have a definitive answer on Tuesday. We have been referred for nhs nano treatment and that's going through the system-hopefully we here back very soon about that too.

Mum herself is struggling, finding it hard to eat and in pain (back and stomach) and constantly tired. Being such a strong lady she has been going work when she can and fighting between through it. Thankfully for the first time in 6 months she managed to put weight on (2lb) this week, it's only small but I feel it's a step in the right direction. Hopefully her diet/enzymes etc are working and this can carry on.

We are trying to stay strong and positive but there are most certainly times you just can't help but to cry.

I hope you all are well and I will update as soon I can.

Levi x

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Any advice will be greatly appreciated

Postby WilliamS » Mon Aug 24, 2015 5:43 pm

Hi Levi,
How is your Mum? Did she get a date for Nanoknife? I hope her chemo/radiotherapy is going well. Best wishes.

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

Re: Any advice will be greatly appreciated

Postby Marieb » Thu Sep 24, 2015 9:59 pm

Hi Levi, how is your mum getting on? Would be good to hear how she is progressing and any news of Nanoknife.

Levi1
Posts: 13
Joined: Sat Jul 04, 2015 10:16 am

Re: Any advice will be greatly appreciated

Postby Levi1 » Mon Oct 05, 2015 5:58 pm

Hello all,

A quick update on what's going on my end. We have been referred for chemo radiotherapy-this means mum has chemo for 3 months the radio for a month afterwards. So far on chemo it's not been great as by the third week on both cycles her bloods have came back too low to have it. She's been up and down on it but always staying strong willed.

We had a letter a few week ago from the MDT and they stated a 'C' word we all would like to hear which is 'cure'- to explain the reason for the radiotherapy is to try and cure the cancer where as chemo alone usually means palliative. So we are holding on to everything we can at the moment.

With regards to nanoknife we didn't qualify on the nhs as they said it was too big- even though the size Guide we have seen we are sure it's small enough. We've contested it but nothing has come from it as of yet. Mum doesn't want us to pay for it as she is hopefully about the radiotherapy.

All the family are trying to keep positive even though it's obviously hard when she has a down day, to me it still doesn't feel like it's real and it's all going to go away.

I hope you all are as well as you can be

Levi x .

Levi1
Posts: 13
Joined: Sat Jul 04, 2015 10:16 am

Re: Any advice will be greatly appreciated

Postby Levi1 » Tue Nov 17, 2015 5:00 pm

Update:

We have just been to a consultation and we have been given good and bad news. Bad news first so we end on a high.... They have found a hole in the spine nearly 2cm big so now that has taken priority over the pancreas. Mum will have to have a high dose of radiotherapy which will hopefully lay whatever was there dormant. They said the tumour must of been hiding it and only noticeable now because it's left a big hole.

Good news is that the chemo (gem cap) has removed the shadows that were near lymph nodes and reduced the tumour by 7mm, which at the start they said don't get our hopes up about the main tumour being reduced. So we are very happy about that obviously!! Her ca19.9 is now reduced to 123 from 560 at the beginning.

Massive mixture of emotions at the moment, but taking it as a positive at the moment.

I hope you all are doing as well as can be.

Love to all X