A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Tue Aug 28, 2018 10:15 am

I am very upset this morning. :cry:
My Nanoknife treatment has been postponed because of red tape. Due to some current reviews being undertaken, the medical profession is clamping down on private treatments. I can now only continue with Nanoknife if my MDT team discuss this and agree that this can be incorporated as part of my treatment. As the only time the MDT team discussed my case was back in April when the put me into the "Go away and die quickly pile", this naturally hasn't happened. The MDT meet on Mondays, so I have to wait until next week to get onto a doubly busy meeting. What happens if they don't agree to it, I cannot even bare to think about. I am paying for this treatment, this is not cosmetic surgery, it is hoped that this will extend my life.

I am at a point of total despair,

toodotty

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Tue Aug 28, 2018 10:50 am

That is devastating! This is your decision and you are in effect half way through your NanoKnife treatment. Words fail me I’m afraid.

Kerry
Posts: 25
Joined: Wed Jun 20, 2018 7:22 pm

Re: Nano knife for Stage IV PC.

Postby Kerry » Tue Aug 28, 2018 11:27 am

Dear Toodotty,

Oh my god - I cannot believe this is happening to you! It’s so unfair. I don’t understand how they can stop your treatment when you’re paying for it.

Reading your post has made me so angry and I wish there was something I or someone could do to help.

Could an online pertition help? Could your local MP do anything?

I understand totally how time is of the essence and you need to get moving with treatment - it’s not fair to delay this or cause you so much stress and upset in what is already such a difficult time.

I hope and pray you can get this sorted. You are always so positive and brave you deserve to have the best shot at battling your PC.

Kerry x

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Nano knife for Stage IV PC.

Postby Michaela1 » Wed Aug 29, 2018 7:08 pm

Hi Toodotty,
Can you have it done abroad? Would there stiĺl be red tape? I think it is disgusting, like you say it's not just for the hell of it, it's actually to prolong life!xx

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Thu Aug 30, 2018 10:46 pm

A quick update,
I have been told in no uncertain terms that my MDT will not sanction this treatment and therefore I am unable to continue with it in the UK. I can go ahead and have it at some cowboy institute on the continent but not with a experienced specialist in the UK. I thought it was a free country, somehow I have been mistaken. Past being depressed, now seething with anger. I have written to my MP, my GP and complained to PALS of the trust that I am under. Please be warned if you are planning any private treatment in the UK you could also be impacted by this. I am in contact with the lovely nurses on this site, and they are equally dismayed.
toodotty, aka stroppy cow, aka trouble is my middle name.

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Fri Aug 31, 2018 9:45 am

I’m so angry for you, how dare they! This is your life and your money, it’s beyond belief. Carry on fighting, behind you all the way x

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Thu Sep 06, 2018 2:19 pm

Well Nanoknife is now off the agenda, I cannot get treatment in the UK as my MDT will not approve it. If I want this I will have to go abroad. In the meantime I will return to chemotherapy tomorrow, round 7 though I have been told that the side effects are likely to be worse due to the build up of toxins in the body. Great, just what I need, I have to hope that the milk thistle affords me some protection. Hopefully the next three months will give me time to review alternative treatments and to pray for some miracle to happen. I still have not been told by my Oncologist whether there is any change since by baseline scan and I have sort of given up asking.

toodotty

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Thu Jan 24, 2019 5:32 pm

Hi All,
Been off line for a bit as I have been to sunny Florida for open Nanoknife surgery in December. It was a much more brutal procedure than I had expected but the surgeon was extremely thorough and zapped anything that looked at all suspicious. So the pancreas, liver and peritoneum were all treated. All tumours were biopsied whilst I was in theatre so they could effectively determine the margins to allow. He also sorted out my stent issue though he says this was a happy accident.


Naturally my Oncologist says it was a waste of money and he hadn't even read the extensive surgery report. Don't you just love open minded people.


Erika

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: Nano knife for Stage IV PC.

Postby KeithKerry » Thu Jan 24, 2019 9:35 pm

Hi Erika

It's good to hear from you. I was wondering how you were getting on. Our Oncologist told us that the Nano knife treatment was entirely inappropriate for a cancer like Kerry's. I have asked around and it seems to be the staging that drives that opinion in this country. Apparently the fact that some parts of the cancer cannot be seen or treated with the nanoknife due to their size or location means that they will grow anyway and replace what has been cut away, either in the same places or elsewhere. Even with chemotherapy and radiation therpay before and after surgery. Likewise with a Whipple procedure. The opinion is that many people that have it succumb to the disease anyway. Most would not have fully recovered from the drastic surgery before the cancer takes them if stage IV patients had surgery.

Frustratingly, Kerry's primary tumour may have been "operable" apparently. Hence why she had a very briefly lived appointment for a pre-op right at the very beginning, before the spread was confirmed by biopsy.

None of this was in anyway delivered unkindly or in a negative way. Quite the opposite. However, it is immensely frustrating that there is so much conflicting opinion, not just about nanoknife, but about surgery for stage IV patients with the "once stage IV always stage IV" approach in the UK, whilst in some other countries there is a seemingly more daring (for want of a better word) approach to surgery coupled with chemotherapy which translates into a seemingly more compassionate and caring view of victims of this dreadful disease.

Ironically, this person is a fairly eminent and highly experienced Oncologist that specialises in Pancreatic Cancer and is a very public champion for more research into treatments and ultimately a cure. When I mentioned this split of opinion they agreed that it was upsetting and confusing for patients and families, but they absolutely would tell us if there was anything else that could be done, either within the NHS or outside in the private healthcare sector. The clinicians find it all upsetting themselves.

I don't for one minute doubt their good intentions nor question their expertise. But I cannot give up and cannot simply let Kerry die without researching every realistic avenue (I say that because some wild and far fetched things have been suggested to me!).

It is an awful situation for patients and families that there is such a difference in opinions and approaches. What we seem to lack in the UK is the ability to give people hope. We do seem to have a defeatist attitude, although that may come across as a little harsh. Words fail me a little tonight.

When you consider that as a species we can achieve such amazing things through global cooperation like space travel and mechanical exploration of distant planets. But we cannot agree a common approach on things like cancer treatments and pathways. There is so much experience and talent in the world in the field of cancer. But no appetite to have a common approach.

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Fri Jan 25, 2019 2:39 pm

Hi Keithkerry,
There is so much arrogance and pig-headedness amongst many of the medical professionals who do not seem to understand that even the chance of extending life will be grasped. If they take the view "there is no point in doing this treatment because you will still die anyway", then why not apply that to everyone? We are all mortal.

I had the op with no expectation that it would cure me, but with the hope that it will allow me to live longer and of this I am still hopeful. Yes, I am having problems at the moment but statistically I have less than a 10% chance of being around at Easter without this intervention and the odds drop everyday. Since the Op, I know that there are no active tumours sending out more cancer into my blood stream. Yes the existing ones will possibly re-seed and I need to be ready to zap them then and there.

I have absolutely no regrets about the treatment even though it was hideously expensive. I believe the surgeon has done his utmost to treat me and is in contact most days to see how I am doing. I believe you know who I am referring to, he would be more than happy to review your daughter's details and feed back at no charge.

In this country we will not improve outcomes without a change of attitude and a willingness to embrace different treatments that are having success elsewhere. I am now having a similar battle to deal with Ascites, even for this there a different opinions and I know whose makes the most sense.


Best wishes,

Erika

KeithKerry
Posts: 60
Joined: Fri Apr 13, 2018 8:44 pm

Re: Nano knife for Stage IV PC.

Postby KeithKerry » Sat Feb 02, 2019 8:51 pm

Erika, I thank you so much for your support and determination, despite your own battles with this awful disease.

I really hope that you're recovering from your operation and that the ascites isn't making life too difficult. My Father lived with ascites for almost 4 years. He used to joke about having a hose pipe plumbed into his liver with the other end running into the bath so that he didn't have to keep on going into hospital to get his abdomen drained. He had some kind of strange and very slow developing occupational cirrhosis caused by working as a welder in the construction industry for the best part 60 years.

He used to get really boated and couldn't eat before he was drained. But was OK for a while after each stay in hospital. He may well still be here now and living with it if he hadn't have succumbed to kidney cancer in the end.

Kerry has a staging scan in 6 weeks (which is after 3 more rounds of Folfirinox). I just hope that the cancer is gone from her liver again so that I can think about other options.

I hope you're doing OK.

Keith

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Sat Feb 02, 2019 10:53 pm

Hi all,

Don’t mean to hijack Erika’s post but content closely related.

I followed Erika to America and had open nanoknife on 10th January. You can read more of my story in previous posts from my diagnosis in June 2018 but briefly, I was diagnosed stage IV with multiple liver mets and offered palliative chemo (Folfirinox) and had 9 rounds. Nothing more could be offered to me here, although I responded very well to chemo. I decided to approach America and sent my scan details etc and was accepted as a patient.

My husband and I travelled out on 8th Jan, PET scan etc on 9th and procedure on 10th. I will admit it was much tougher than I expected but all went well and we arrived home on 21st Jan. I started back on chemo this Thursday to ‘mop up’ stray cells. I’m holding my breath at the moment not daring to think too far ahead but loads of benign biopsies taken! I know it’s not a cure but the chance of more future ahead is more than I could have hoped for a few months ago.

Anyone considering this option, please make sure you are in the best possible health....protein, protein, protein and exercise as much as you are able. Apart from the obvious discomfort, my biggest problem after surgery has been my appetite, a problem I thought I’d never have! Everyday I’ve managed to eat a bit more, setting small hourly goals, even if it’s half a biscuit.

I’m taking each day at a time at the moment, I know how quickly things can go downhill so I think I’ve poked my head in the sand for a while. I think it’s called ‘plodding on’.

I financed the trip with my life insurance which paid out due to my terminal diagnosis and my children have set up a ‘Go Fund Me’ page which has generously raised some too.

It’s a scary decision and I was convinced I wasn’t coming home again but I’m here with good news and hope!

Kate x

Erika.... thinking about you and hoping you’re feeling better x