Nanoknife and Cyberknife

[MSH]

If there is one positive to come from pancreatic cancer, it is to be diagnosed at a time when so many exciting treatments are being developed. I am coming up to a year since diagnosis, and statistically should be dead. The one year survival for males is only 17%. Instead I have had the benefit Folfirinox which has stopped any symptoms from the disease for many months and reduced the activity of the tumour to a bare minimum, at least according to the PET scan.

I have had the benefit of a recent MDT meeting who found my tumour to be inoperable and suggested I await the recurrence of further symptoms before having second line chemotherapy. Well thanks but no thanks, I prefer to be a little more pro-active. When this does come back it will only be more difficult to treat. Irreversible electroporation (Nanoknife) is a new treatment not yet widely available, but with huge promise. This years summit on survival suggested it may allow tumours to be shrunk away from vessels to make surgical treatment possible. My thought at the time was that if it can do that then why not treat the whole thing. When I asked this question at my appointment the reply was that they may be surrounding micro-deposits which are more amenable to surgery. My suspicion is that this is so new that no-one really knows. NICE suggests further studies on IRE are needed but that "one study of 27 patients with pancreatic cancer found 100% success". So where are these studies being done?

I have a further problem outside the pancreas which has only really come to light on my recent PET scan. There had earlier being suspicion of bony spread because sclerosis in various bones on later CT scans. Oddly the only area taking up FDG on my PET scan was in one of the thoracic vertebrae not one of the bones shown previously. My best hope of treatment for this is with stereotactic radiotherapy (cyberknife), and my oncologist has asked an opinion from a colleague at the XX.

To enhance the chances of successful nanoknife treatment a short course of chemotherapy is used around the time of the procedure. My oncologist who encouraged me to seek advice regarding the treatment has with apologies declined to prescribe this chemotherapy. She has taken advice from the HPB unit at Newcastle and her clinical director. I know that the co-ordination of NHS and private care can be contentious, but fail to see the rationale of involving an oncologist who knows nothing about me and is over 300 miles away.

I have confirmed my appointment for nanoknife surgery on 8th January and will seek a date for cyberknife treatment later this month. I will update this post post treatments.

[J_T]

Wow! just wow!

So you would be able to ENHANCE the chances of exciting and pioneering new treatments for pancreatic cancer and thereby prolong your life and your oncologist says no to the short course of chemotherapy needed to so?

Disgraceful, it really is. It all comes down to £sd, meanwhile people are suffering unnecessarily and even dying. I'm so frustrated and angry for you.

You still have guns in the armoury and most of all you have your dogged determination to keep pushing through.

So many inspirational people on this forum.

Good luck Mark, I'll look forward to more and more positive updates from you in the New Year.

Juliax

[MSH]

Julia, this isn't about money. The chemotherapy proposed is capecitabine which would cost perhaps £200, a single course of Folfirinox would be over £2000.

http://www.medicinesresources.nhs.uk/upload/documents/Evidence/Drug%20Specific%20Reviews/LCNDG_FOLFIRINOX_UPDATED.pdf

I suspect the argument used would be along the lines of not wanting to get involved with something they know little about. Also perhaps keeping lines of accountability clear in the advent of complications. It is not uncommon on these boards to read of an attitude of antagonism from some surgeons and oncologists to nanoknife treatment and I suspect in reality this is more about guarding territories, so much for holistic care.

I am very fortunate in having the means to access private treatment, and yes these treatments are largely untested, but where are the tests being done? There is little wonder that pancreatic cancer has such an horrific prognosis when NICE is still pushing gemcitabine as first line treatment.

[J_T]

£200?! I hope I'm not being too dramatic when I say these posts make me weep!

How on earth can progress be made when our doctors seem so uninterested in broadening their knowledge and skills. You'd think they'd want to be at the forefront of exciting and so far positive new treatments. It's time they DID get involved, who, what are they waiting for!

No wonder the Germans are way ahead of us!

I think I might explode!

[cestrian]

Hi All

All this makes me await my own discussion of nano-knife with even more anticipation!! I think you are right Mark in your belief that this is more about guarding territories and keeping clear lines of responsibility in case of complications. I guess we've only got to look at the horrendous cost of "compo" to see why this may be the case but it is very discouraging of innovation. The UK attitude of "What if this goes wrong" compares very badly with other countries' "Let's at least try".

Of course we can criticise the profit motive in the USA but it does seem to encourage the "can do" attitude so admired in business but so feared in the NHS. My daughter has a couple of friends locally who are "interventional radiologists" who seemed totally unaware of the procedure but who quickly looked it up so they could give her feedback. Operating in a bubble?

Love and Peace

Mike

[Sueba]

Hi

We too faced this attitude when Mick was diagnosed,inoperable and that's it basically!

Well actually no!we too looked at nano knife and cyber knife as they seemed promising.

As you may know we went to Heidelberg where the attitude over there was so different,we can help you! Why can't you have this done in this country?the surgeon asked?had we not the skills?no we have the wrong attitude over here,we need to put money into researching procedures and push for pioneering procedures.

When we said we were going to Heidelberg we were greeted with yes the Gemans are more aggressive than us!!!but to us it was a case of if you never try you'll never know!!

You may know Micks outcome.. He died 4 weeks ago,with an oesophageal bleed,totally unexpected and at the moment his death is still unexplained,waiting histology.

One thing we both had said over the last few months was that he never once regretted having surgery it gave him back his life and his health and he felt he'd given it everything he had!!good luck with your continuing treatment,we need people like you to break the mould as Mick did and be proactive!!

Sue

X

[InfoForMum]

Hi Mark,

I feel agrieved on your behalf about the response of your local oncology team. As you probably saw, we've had a fight with our previously supportive care givers over my Mum's decision to have nanoknife, short circuiting the "normal" "protocol" treatment path.

Now full steam ahead to have it the same day as you, but did have to go to an oncologist in london to whom we were referred by the good professor to get the prescription for the accompanying chemo (to be adminstered at home under his supervision by Healthcare at Home). Far from feeling hobbled by his lack of understanding of recent history he had been proactive reviewing scans, notes and my home maintained history of symptoms, diagnosis path, treatments and drugs.

The enormous benefit was his familiarity with the procedure, although his consultation was unbiased, looking at all options for next steps and both he and the professor had a conversation with her local oncologist. The upshot - 3 treatment options were on offer - alternative chemo (probably capecitabine and/or gemcitabine erlotnib)as her tolerance for oxaliplatin was lowering (peripheral neuropathy to end of each cycle and into next), CRT with capcitabine as sensitiser (taking into account the non-statistically significant benefits shown up in a recent large trail) and 3rd, newer, more experimental treatments like Nanoknife.

We felt all avenues were properly explained and Mum considered all in depth. Now all systems go for option 3. Gratifyingly, given the relationship we thought we had with him, the local guy is now on board to offer the pre-agreed treatment with the hope of eventual surgery depending on the outcome of IRE.

I doubt many would have enjoyed the psychological pressure applied to adhere to protocol (at one point we were told nanoknife should only be considered if we had given up on CRT and possibly surgery as standard treatments) and these kinds of relatively untested approaches may not make sense to many. But Mum and I are with you on the "not on your nelly" rsponse to wait and see approach.

Here's hoping that success rate applies to both you and my mother and both she and I are ready to wade in to anything that moves this towards being available on the NHS for others.

Sarah

XX

[J_T]

It saddens me that almost every step is by tooth and claw.

Are we in the business of saving lives or not?

[MSH]

Hello Sarah,

I had thought to make a private appointment with the doctor at the XX in order to get an opinion on cyberknife treatment and the prescription for capecitabine at the same time. In the end, because of time constraints, I got a prescription from my GP and used an excellent on-line service which expeditiously delivered seventy 500mg capecitabine tablets for £185.88. I have an appointment at the xx on the 7th January, which is very handy. You have it exactly, the best way of making IRE more widely available is for us to have good outcomes, so here's hoping too.

I am looking forward to the coming New Year with more than the usual anticipation.

Mark

[InfoForMum]

Excellent creative problem solving! What struck me harder than everything when consulting with the London oncologist was that he was 100% behind Mum, as an individual, and was geared up to support Mum and facilitate whatever she decided was best out of the FULL range of offered treatment options.

I'd followed up, nervously, asking how we put her case in front of surgeons with the right vessel resection expertise, should surgery look possible post IRE. The answer "WE will make sure we get to the right people when we know the outcome".

I have to admit I cried. It felt like I had been carrying an enormous weight on Mum's behalf and someone else had firstly validated my thinking and research (always a fear I wasn't presenting Mum with all the choices and right information about them) and secondly he was offering to share some of that burden. It was the first time I felt I could safely take my foot off the gas and has meant both Mum and I have had a relatively worry free and normal Christmas.

I don't think doctors grasp how much withdrawl of that partnership approach, making the fight for treatment a confrontational experience, impacts people. Lets hope that improves one day.

Sarah

XX

[MSH]

An early start on Tuesday to get to my appointment at the XX. I had hoped to come away from this with a treatment plan, but as ever things are rarely straightforward. It is true that the cyberknife provides a focused beam allowing more powerful treatment, but you lose some of the coverage which more conventional radiotherapy gives. Also there is the issue of which bones to treat. Can we assume that those which didn't take up glucose on my PET scan have been cured by the Folfirinox? The outcome is more tests and an MRI was recommended. One practical suggestion was to consider taking a bisphosphonate. These drugs are usually used in osteoporosis, but apparently there is some evidence that at least in breast cancer they can reduce the risk of further spread from the bone. I am loath to take more tablets but at least this should be just once weekly.

The following day I went for my nanoknife treatment. The procedure itself takes one or two hours, with the majority of this time being taken by the accurate placing of the probes under CT control. The area treated is infiltrated by a local anaesthetic, but I was aware of a mild discomfort narrowly centred in my upper abdomen when I surfaced from the anaesthesia. This quickly changed to a more generalised abdominal sensation which I can hardly call a pain and was absent when I first woke this morning. The professor said that he was very happy with how things had gone and suggested a follow up CT scan in 2 months. I don't need a dressing and the only external evidence are two very fine marks on my upper abdomen. I have had to put my gym activities on hold for now but was told that I should be fit to ski after two weeks. How I'll manage with my neuropathic feet remains to be seen.

[PCUK Nurse Jeni]

Wonderful news Mark, and glad that the procedure went well. Not sure about the Skiing! How bad is the neuropathy? Constant or intermittent? Is your balance affected? Be wise of course. Have you asked at oncology about any tips to help this?

Jeni.

[cestrian]

Hi Mark

Excellent news and I sincerely hope the Nano knife has had the required effect. Two months for the CT scan will seem an awfully long time but if you can get your ski trip in that will help it pass.

I am so full of admiration for your courage in getting this done and indeed must chase up my message which I think I may have misdirected as I have had no response and could do with some news to report to my specialist next week!

Good Luck

Love and Peace

Mike

[MSH]

Jeni, the neuropathy is pretty much confined to my fingers and toes and is constant though more in the way of diminished sensitivity. The only real effect I notice is some difficulty in buttoning up my shirts. I used to have to check in the mirror to manage the top one, though less so now. Whether this means I'm better through practice or the condition is resolving is moot. I think my balance will be affected but I had noticed that as a general ageing thing anyway. When skiing there is generally a choice of slopes and it should be just a case of staying within my capabilities. Anyway there is nothing firmly arranged as yet.

Mike, thanks for your kind words, but I'm not sure how courageous I am. This is the closest I'll get to a Whipples and compared to that it's a doddle. I'm not fretting about the scan, in my mind I'm thinking, right that's the pancreas treated now what about the bones.

[InfoForMum]

Mike, so pleased it went well for you! You and my Mum will be ticking off weeks to the scan together, but in your case you have another battle plan to finalise so good luck with that too. In Mum's case treatment and recovery has been less straight forward, but so glad you are back to normal so quicky, that's great.

Sarah

[J_T]

Hi Mark, pleased to hear the procedure went well and the information will be so useful for others. Hope the treatment has the desired effect.

Best wishes

Julia xxx

[Bee]

Hi,

Glad all went well fingers crossed for good results!

Bee xx