Advice re nanoknife

[Joanna]

Hi everyone,

I'm new to this forum, and have read a lot of very useful information on here over the last couple of days so thank you.

My Dad was diagnosed with stage 4b pancreatic cancer in May (in head of the pancreas, surrounding the artery in the pancreas and spread to the liver). Was such a massive shock at the time, but I think we are all slowly getting back to a normalish life.

He's been on a trial and his latest CT shows that the tumour has reduced by 25% so that was a nice to get a bit of good news after 3 months of no good news!

I was wondering if anyone had had any experiences with nanoknife - in particular when the cancer had already spread? We went to get a second opinion from a private oncologist who has suggested nanoknife as an option but just wanted to see what other peoples experiences were with this?

Thanks

Jo

[Dandygal76]

Hi Jo,

I would suggest your best bet is to join the Facebook group Nanoknife Warriors. There are a fair few people on there who have had nano in London and they are responsive to queries - it is a good support group. My dad is going to have nano on his tumour and the mets to the liver but we cannot do this until he finishes the trial he is on. The professor who does it has people going 4.5 years later with mets to the liver and there have been some good stories out there. The thread by MSH on here was an example of nano assisting with mets. Unfortunately though he died from other complications.

I am sorry you have found yourself having to deal with this and yes that initial emotional stuff does settle somewhat. Out of interest, can I ask what trial your dad is on?

x

[Dandygal76]

Apologies, it is 'nanoknife surgery warriors'. In the USA they often have open surgery nanoknife but there are quite a few UK people on there who have not had open surgery nano. It is a very knowledgeable group.

[Joanna]

Thanks for your reply, I will have a look at that facebook group.

He's on the resolve trial - consists of gemcitabine, abraxane +/- ibrutinib.

Do you know the name of the professor who is doing it?

Thanks

Jo

[Dandygal76]

Hi Jo, google London and Nanoknife and it should come up in top one alondside NHS ones that don't treat Mets. PCUK don't like private name dropping on here but they will let you know details if you e-mail them or phone. You will easily find the name on Nanoknife warriors. There are two heros on there... one is a dr in USA and the other is Professor x in London. x

[Joanna]

Ok great, thank you so much for your help!

[Ruthus]

Hello Joanne

I am very sorry to hear of your situation. I had a consultation with Prof and he is very knowledgeable and pleasant. I was deemed suitable for Nano knife and would have definitely pursued this treatment but then I was deemed operable in Germany so went for this instead.

If you google nano knife and London you should see Hospital come up. This is the one you want and has the details of the Prof on here. You would need to have the scans sent to him for review and take it from there. The cost of the initial consultation is around £300 and the treatment is £15,000 for PC ablation. If there are mets in the Liver he may want to treat these first before the pancreas and the cost is less (I think!).

When I met with the Professor he told me his specialist is the liver and then found more and more people requesting pancreatic intervention. He has done a fair number over the past few years and is due to have a paper published with the results.

Best of luck

Ruth

[Joanna]

Thanks Ruth for the advice, very helpful! We are going to book an appointment to see him.

I hope your surgery in Germany goes well. I've been looking at treatments in Germany too for my dad.

Jo

[Ruthus]

Hi Jo

I've actually had my surgery in Germany at the end of May and the tumour was successfully removed. I am now 8 weeks post op. Feel free to email me via the PC nurses if you want any further information.

Ruth

[Joanna]

Hi Ruth,

Thats great news, so glad they were able to successfully remove it all!

Jo

[Dandygal76]

Did you manage to book your appointment with Prof Jo... I hope things are still ticking along. Will the trial let your dad have nano and the trial at the same time? x

[Joanna]

We have booked an appointment to see Prof next week. I don't think he will be able to have the nano while on the trial as it will interfere with the results I suppose. I am going to ask the professor whether he thinks it will make too much difference if we delay the nano until he stops responding to the trial chemo - if he does then we will have a difficult decision to make as to whether to continue with the trial or go with the nano.

As my dad is responding to the trial at the moment my view is that we continue with that for now and then go with the nano once he is no longer responding, but will discuss this with the professor when we see him.

Dad has his chemo tomorrow, has had a 2 week break as had pneumonia last week so hoping this course all goes smoothly!

[Dandygal76]

We are absolutely the same. We are very lucky they are responding and I spoke to prof and said we have to deal with the mets floating in his system and at least on trial scans are usually 8 weeks. As with everything with PC there are 2 schools of thought re nano now or delay round trial. What I will say is that when we get back in NHS we will not be telling them about nano until we get their 3 month scan. The ltd literature and conversations I have had is that Nano should be in conjunction with chemo but I have seen too many stories of NHS over prudence and they stop Chemo. Our NHS oncologist was not enthused over nano and so I am not willing to take the risk that the negativity will continue (over other negative things as well re next chemo route). This is my dads choice and it is my family's choice, there needs to be a little more respect for that. Do you have an NHS oncologist (your trial may be NHS... I did look it up but I am not sure) - how have you found them? I am currently trying very hard to research Forfinox prices right now but blimey... if there was a median for that around the world it would make sense to none of us. I have sent e-mail to relevant pharmaceutical company for some realistic costs and will update on my thread when I know. However, I am not sure we could afford it.

I still do not understand why some trial cannot go for stage IV... forfinox, immunogy latest drug, nanoknife, cyberknife, hollistic approaches. I know it is not realistic the pharma companies will do this but there would be scope for a joint charity / funding body approach.

[Joanna]

Hi Dandygal

Having read your story we seem to have been told a similar thing at the beginning - that if we go for the trial we will then still have the option of going for the folfrinox after. This in the end is why we made the decision to go for the trial so that we could have access to the abraxane on the nhs, and then still have the option of folfrinox after. Having read your posts it seems like you might now be being told otherwise is that right?

We are currently having the RESOLVE trial on the nhs. Is your dad having his trial on the nhs? I've just done a bit of reading on the YOSEMITE trial and seems like a very interesting one as they are using a monoclonal antibody in the trial. I have done a lot of research on immunotherapy treatments in pancreatic cancer and am very keen for my dad to try one of them.

My dad is currently having the trial on the nhs. His oncologist is nice but I would say is not very interested in doing anything extra (eg supplements) and does not really give much other information about further treatments available. I have therefore done a lot of my own research, and we went to see another oncologist privately in London for a second opinion. He was the one who originally told us about the nanoknife and he also does immunotherapy trials so we are keeping our options open.

I was also looking into tumour profiling for my dad, and I see that you are also trying to organise that! I will keep following your thread to see how you get on with that. I was going to ask our oncologist about it but I'm not sure he will be that helpful with it, but worth a try!

[Dandygal76]

Joanna,

I have written to the oncologist and will let you know the outcome. I have a letter from hims stating dad will be given Folfirinox after the trial. Once I get a reply from him then hopefully he will say it is still on the table but if not, I will get dad referred to a more forward thinking oncologist on the NHS. I suspect the professor your saw in London may be the one that referred dad to his trial because Dad's one is not NHS.

Now dad is better and eating I think I will again take a look at supplements and alternatives again. It was all we could do to get him to drink water at one stage and so we had to abandon a lot of it but we are going to start gearing up to put them back in, go back to organic and no processed food.

I think you saw on my FB page where you can get the tumour profile undertaken (I assume it was you that joined and not another Jo?). We will have an update very soon on this. Oxford and the Institute are now in contact directly over e-mail. Before he goes to Nano (or at the same time) I will ask Prof to take another biopsy to see what has changed with Chemo and try and keep on top of the evolution of the blasted beast.

I really do get that debate re trial v Nano but I don't think there is a right answer. As with everything around this... decisions are between the devil and the deep blue sea. In some ways the quicker the better that dad is off the trial and into Nano but if the cancer in the system is not dealt with then it will just keep popping up everywhere. As long as everything is shrinking and not active we have decided the trial it is. This is even more exacerbated right now until the Folfirinox debate is resolved. I want to resolve the issues and get second NHS opinions if necessary whilst he is getting first line treatment.

Your dad has had a great response from the Resolve trial... you should be v pleased.

Much Love

xx

[Joanna]

Yes that was me that joined the facebook group - thats great that they are sorting out getting the tumour profile for you. I asked our local oncology team but they didn't know where we could get this done, so will look into what you have done.

We are going to see prof on Tuesday so will update you on what he says to us.

Glad your dad is feeling better and eating better now. At the beginning my Dad had no appetite, was loosing weight rapidly and hardly eating anything. He too has got his appetite back now and started to put on a bit of weight, so thats been a bit of a relief which I'm sure it has been for you too!

[Proud Wife]

The very best of luck for Tuesday Joanna.

Love PW xx

[Veema]

Dandygal...I remember seeing the costs of the drugs involved in folforinox on the wall at our chemo unit and was shocked at how cheap they were! We're not likely to be back there till the end of September or I could have copied them down for you.

[Joanna]

Has anyone had any experience of having microwave ablation of liver metastasis?

[Didge]

Yes my partner had one liver tumour treated with that and the other with radiotherapy. I think both worked but sadly his disease progressed shortly after but in different places.

[Joanna]

Thanks Didge, sorry to hear about your partner

[Joanna]

I was just wondering if anyone had any tips for helping with the side effects of fatigue post chemo. My dad is now on folfrionox as he was progressing on the trial so had to stop that. He had his first session on Tuesday and has been so tired since, much worse than he was with the gemcitabine/abraxane. He also had an ablation to 3 of his liver metastasis last week, so had a double hit to the body!

I know this is a side effect that is to be expected but just wondered if there was anything anyone had come across to help?

[Veema]

The tiredness will lessen with each subsequent session...Nige's did. He needs to keep his potassium and such things up, so lots of bananas, oranges and napolina tinned tomatoes help with keeping the neutrophils up.

Vx

[WifeampMum]

Gentle exercise is good if he can manage it, e.g. a short walk each day.

[Joanna]

Thank you both for your advice - we will try them!