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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Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Nano knife for Stage IV PC.

Postby Dandygal76 » Mon Aug 06, 2018 10:33 pm

I am not on here very often but this has really set me thinking as to why we took this route and why it was not the best route. If you look at the NICE approvals - it took a huge fight to make Abraxane available and rightly so that it should be available. It is evidenced that it extends lives a few months at a stupid cost to the NHS. They are willing to spend a significant amount of their budget on this decision. Nano is silly cheap in comparison, If it worked it would be a huge win for the NHS. Said professor is making money from our desperation (I will take the liability PCUK). Don't be fooled... sociopathic traits do exist and he is charming and warming but he knows everything I say is correct. Look at my thread and see who started my dad's treatment (as PCUK do not like me naming). He still makes money privately but he is passionate for solution and at the forefront of cancer's like these. All around the world. We didn't win but he gave my dad hope and a chance... put him on a trial and my dad lived his life in hope.

toodotty, please be careful what you read although I am sure you are fully informed. Dr Martin et al perform open surgery nanoknife - their procedure is not comparable to said professor. Also, they are open and publish their results. Just ask said prof for his stats and keep a copy of it... surely he has nothing to hide? If we went to next procedure it would have been £40K. You are entitled at that price to written confirmation of his results.
Last edited by Dandygal76 on Tue Aug 07, 2018 9:11 am, edited 1 time in total.

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Nano knife for Stage IV PC.

Postby Dandygal76 » Mon Aug 06, 2018 10:49 pm

I just know so much where you are at. Screen print this and give it to him, get my name from PCUK or it is in my thread somewhere. Tell him to sue me for slander... he would not have a leg to stand on. I really wish you all the best and it is why I stay away from here in general... I am not always right, even though I think I am. But I do love riding across that moral high ground at times. I hope it works for you, perhaps it does for some. My dad sort of got 'blasting the bugger' than he did chemo.

PCUK Nurse Dianne
Posts: 279
Joined: Tue Aug 14, 2012 3:29 pm

Re: Nano knife for Stage IV PC.

Postby PCUK Nurse Dianne » Tue Aug 07, 2018 4:57 pm

Dear Forum users,

You will notice that this thread has been edited as some aspects do not meet the rules and regulations of using this Discussion forum. I would hope that you have all read through the forum rules and be reminded that we do have to be respectful of all health professionals and health institutions. You may have individual views however this is not within the remit of the forum to cause any reputational damage to others.

This forum enables you to gain support during these difficult days, and we encourage you to do so safely and respectfully. We also encourage you to touch base with ourselves if you have specific medical related questions that we can guide you with or link with other health professionals to gain further information.

I will remind you that our rules and regulations state the following:

4) Keep it legal.

Please do not identify specific healthcare professionals (especially by name). Please do not 'name and shame' individuals or organisations. Publishing statements which damage others’ reputations could leave both the forum user who posted the statement, and Pancreatic Cancer UK, vulnerable to legal action under libel law.

I am sure you will all appreciate this.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
Support phone line: 0808 801 0707
Email: nurse@pancreaticcancer.org.uk

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Nano knife for Stage IV PC.

Postby Dandygal76 » Tue Aug 07, 2018 10:22 pm

Thanks Diane but I do think everything I said was legal and I did not name neither hospital or doctor. It is clear in my original thread that he stated he was publishing his results and did not do so. It is not something I made up. However, my intention was never to put PCUK in a position that they would have to spend any of their valuable resources defending my take on things. I totally understand where you are coming from and IF i win my legal case I hope I can come back and legitimately publish the results here. PLEASE, anyone considering NANO contact the nurses. Do not waste your money on stage IV PC Nano knife without doing so and without requesting ACTUAL stats and results from any doctor saying they will provide the procedure. Go on a holiday of a lifetime instead. If you would like my original take on this (that PCUK moderated) then you can get my e-mail from PCUK and I will tell you personally. I am back at work again tomorrow and will be on my e-mails (been off for few months if anyone tried to contact).

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Tue Aug 14, 2018 3:17 pm

Hi All,
First Nanoknife booked for next week, initially to attack the liver tumours, the pancreas to be targeted the following week. Not sure how my Oncologist is going to take this, I was unable to make my last appointment as I was in hospital with a blocked bile stent, but I guess I will find out this Thursday when I see him!
I have decided that I will have to become my own clinical trial, it seems to me that the people who survive the longest are the ones that take things into their own hands.
I have met my first milestone target, of still being alive when my son gets his A Level results (this Thursday), something that was looking increasing unlikely in May. Next target, eldest son's 21st at Christmas.

toodotty

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Tue Aug 14, 2018 4:00 pm

Wow!

Good luck! I’ll be folllowing your progress with great interest. Presume Prof Leen is doing it? How were your recent scan results?

Xx

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Thu Aug 16, 2018 1:05 pm

Hi All,
Long awaited appointment with Oncologist today but unfortunately they have not been able to view my CT scan which is at another hospital. They have not been able to download it successfully and despite me hand delivering a copy on disk yesterday, this has not been reviewed either. Hugely disappointed, and I may have to have another CT scan if the last one is not up to scratch.

The good news is that the Oncologist is fully supportive of me having Nanoknife. He says that they used to use this at one of the Trust's hospitals but found no evidence of it making any difference, so they stopped doing it and now it isn't even an option on the NHS.

So we have agreed to me taking a chemo-holiday, partly so that I can do Nano-knife but also because of the toxicity of Folfirinox. If my condition remains stable we will hold off for as long as possible before starting the next phase, but have regular reviews.

toodotty

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

Re: Nano knife for Stage IV PC.

Postby Michaela1 » Thu Aug 16, 2018 10:11 pm

Sorry they couldn't view your view your CT scan Toodotty, but like you say great your oncologist is in board! Do you know when your next appointment will be with nanoknife again?
Sounds great to have a chemo holiday too! How many sessions have you had again of folfrinox? Are you going to try and have a few days away with your time off?
Good luck when you do have the nano knife.
Michaela.x

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Fri Aug 17, 2018 10:43 am

Hi Michaela,
I have had the full 6, though 3 were reduced rounds, (2 because of jaundice and 1 because the bottle leaked down my T-shirt for 8 hours, oops!) Feeling better than ever, about to go out on my bike for the first time since diagnosis, hopefully 10 miles to go and pick up my CREON prescription.

First Nanoknife scheduled for Wednesday, eek!

Hope you are feeling OK.

toodotty

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Mon Aug 20, 2018 12:09 pm

2 days to go to Nanoknife. I had a very useful discussion with Prof L this morning. He is concerned that the last CT scan shows things as a lot worse than he expected. He particularly wanted to know how I was feeling in myself, and I feel better than I have for most of this year. I did say that I wondered whether the CT scan was even mine, it paints a picture of someone who is bed-bound and on oxygen, which I am anything but. I suggested that a lot of what had been reported was not fact but an educated guess of where I should be given than I am 5+ months into this disease. He admitted that there was a lot of truth in what I was saying, so plan for Wednesday is further investigative tests before we start, I have not even had a biopsy on the liver mets, this might not even be cancer. If he is not sure about the liver, he will switch to the pancreas first, then re-visit the liver later.
toodotty

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Thu Aug 23, 2018 2:05 pm

Hi All,
Back from my Nanoknife treatment, 24 hours yesterday, and feeling better than I expected. Prof L has ablated 3 liver tumours and had a good look at the pancreas. As expected, the previous A&E CT was unduly pessimistic about my condition, some of the things seen may have been directly related to the blocked bile stent. He is happy to go ahead with the pancreas next week (as indeed I am!). I was pretty sore after the procedure yesterday so I was put onto morphine to start. Then onto paracetamol afterwards, stronger pain relief was available if needed, but this was fine for me. Last dose of paracetamol was at 7am this morning and I am in no pain now. I have been taking Arnica to help which seems to have done the job. Next week will be more challenging as a bigger tumour and more difficult to get to so I am expecting higher levels of pain. But overall very happy, and the hospital and food were fab.

toodotty

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

Re: Nano knife for Stage IV PC.

Postby Kerry » Thu Aug 23, 2018 3:28 pm

Toodotty I’m so pleased to hear your treatment went well and even more pleased to hear the last CT did not reflect your current condition.

You’ve been so supportive in my threads about my dad and I am in awe of how brave and positive you always are. You’re a pioneer in finding the available treatment and must be so much help to so many people.

I’m sorry my thread ended so negatively and after posting it I felt bad for any of the PC sufferers reading it. I want to reiterate that my dad was more elderly and his cancer was very progressed when it was discovered. It was also a very aggressive form of cancer that apparently is quite rare in PC (only 1 percent).

Anyway, I am following your progress and sending all my positive thoughts your way.

Kerry x

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Thu Aug 23, 2018 5:20 pm

Hi,

So pleased all went well and all positive for next week, sure you’ll keep us updated with your progress. Good to hear you’re pain free so quickly after the procedure. Just home from round 4 chemo, perhaps be following in your footsteps soon if I’m a suitable candidate.

Kate x

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

Re: Nano knife for Stage IV PC.

Postby Michaela1 » Fri Aug 24, 2018 2:54 pm

Wow toodotty that is excellent news and all sounding so positive! Sorry not replied earlier for some reason the website just wouldn't let me log on, had to email and get it all sorted! I know this is a bit of a personal question so you don't have to answer but was wondering how much this nanoknife is costing as it is private right? Would like to know so if I ever become eligible I know how much I have to try and raise!? I've had session 2, was a bit sick and my hair was falling out, but I have pretty thick hair so you can't notice....wonder if it will all fall out!? Anyway good luck for next week, fingers crossed the pain won't be so bad.
Michaelax

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Fri Aug 24, 2018 9:10 pm

Hi All,
Thank you for your replies, it is always a pleasure to read them.
A couple of quick answers for Michaela, the cost of Nanoknife will depend on how much and how difficult it is to treat. Each treatment is likely to be in the range of 10-15K, most of this is to pay for the theatre and the theatre staff. I have funded mine by the discovery that my life insurance pays out on terminal illness.
Re loss of hair with Folfirinox, I lost all of my non-grey hair on round 2, it literally melted off my head. It was hideous, it looked like a skinned cat in the shower! This could be because I was jaundiced, blocked bile duct meaning that my body could not expel the chemotherapy normally making it more toxic. After round 2 I didn't lose much hair and I have noticed that there is now some re-growth. I am now living with a comb-back, rather than a comb over and with a smart hat I can just about pull it off!
Feeling well today, off down the paddock early to pick up the horses poo so back to normal routine at the moment. Sadly one of my chickens died overnight due to old age, so Shirley Bassey has been buried today.

Have a good bank holiday,

toodotty