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jss
Posts: 3
Joined: Sun Dec 18, 2016 9:18 am

can you have nanoknife without chemo?

Postby jss » Wed Jan 11, 2017 4:01 pm

My mum went to have Whipple last year but they discovered the tumour was localised but inoperable. She is due another ct in the next few weeks to see what tumour looks like now, before making a decision on chemo. She doesn't really want chemo, but her doc offered the chance to have nanoknife procedure IF she had chemo first. Does anyone know if someone could go for nanoknife without first having chemo? If not, would it be worth doing the chemo (even though she doesn't want to) to be in with a chance of having it? Would love to hear experiences and views.

Veema
Posts: 475
Joined: Mon Feb 02, 2015 5:35 pm

Re: can you have nanoknife without chemo?

Postby Veema » Wed Jan 11, 2017 6:14 pm

Dandygal is your person for all things nanoknife, but my understanding is you get better results having it alongside chemo.

It's great that your doctor has suggested it, its not often offered as standard treatment.

Good luck

Vx

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: can you have nanoknife without chemo?

Postby Dandygal76 » Wed Jan 11, 2017 8:10 pm

Yes you can probably have it without chemo but you are putting all your eggs in the basket that there is no spread and this is proven unlikely. Even with the just the whipple and chemo it is still the minority that will make 5 years at between 20 -25% and I would think the nano would be less likely than that although open surgery in the USA on Nanoknife seems to have much improved results.

If it is being offered to you via the NHS to try and reduce the tumour away from blood vessels then you will probably have to play by their rules. If you are going to try privately to go with Prof L or another private consultant then they may do it but I would be surprised if they do not also say chemo as well would be best. But, being private practice, they may consider it could increase how long your mum lives but not be a cure so they could probably be persuaded.

Is your mum fearful of the chemo? She is in a better position than most that she could be 'lucky' to get 6 months strong chemo, nano and then a positive result to then have the whipple and a little chemo afterwards and then recover fully. I have seen it happen. If it is left and the cancer spreads to stage IV then the only option would be palliative chemo to reduce the symptoms or to go for no treatment. If you reach stage IV then it will be very hard. It is not so much the actual pancreatic tumour that is the biggest risk, it is all the cancer that may be in the system as a result of it.

If you are on the NHS and there is the potential for nano and chemo then I would suspect they do have a view it could shrink enough.

If you are not in the UK then in Germany you can have a partial whipple and nano at the same time which seems to be having positive results. They take out the what they can and zap the rest.

It is a little hard to advise because the info you provide is limited.

I do also often say go to the nanoknife warrior facebook page because there is vast knowledge there to answer your questions from every type of nanoknife procedure and around many successes and equal failures. Nano is not a proven outcome and it does not work a lot of the time but, at the same time, I do see promising results in many.

xx

jss
Posts: 3
Joined: Sun Dec 18, 2016 9:18 am

Re: can you have nanoknife without chemo?

Postby jss » Wed Jan 11, 2017 9:33 pm

Wow thanks for all that info dandygal76. She has stage IV already. They opened her up mid December but the proximity to the artery made it inoperable. They aren't offering it on the NHS, she would have to pay for it, but it was suggested as a route she could go down with that Prof, but only if she had chemo first. The side effects and risk with chemo are the main factors. She says she would rather have a few good months, than potentially longer with all that comes with chemo

Marmalade

Re: can you have nanoknife without chemo?

Postby Marmalade » Wed Jan 11, 2017 9:56 pm

It is my understanding that nanoknife is never used without chemo. M

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: can you have nanoknife without chemo?

Postby Dandygal76 » Wed Jan 11, 2017 10:18 pm

Marmalade you are right - I have never seen it without chemo but at a lesser stage described then I thought they may consider it privatley. JSS, sometimes I think I know more than I do... why is it classed as stage IV... as far as I am aware it needs to have spread to outer organs to be stage IV. As I mentioned, it is difficult with ltd info to advise.

Also we will all tell you the major thing you should do... call PCUK tomorrow and speak to the nurses. You will not regret it. They have far better advice than I could ever provide.

My dad has been in for nano on his liver today. But, his cancer flowing around his system is the greatest issue and not the tumours you can see right now. It cannot spread if it is not broadly in the body / system.

Your mum may also benefit from a call to PCUK. Sometimes it is good for them to also talk to someone independent... not us, and not the medical team treating. Just someone with no background to the whole thing to allay their fears and without us all in tow to the various meetings.

xx

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: can you have nanoknife without chemo?

Postby Dandygal76 » Wed Jan 11, 2017 10:37 pm

I wanted to add that I know it is hard (and trust me, I have eaten so many words as I have matured... a little bit... over this) but you do need to listen to your mum and respect her decision but.. at the same time, make sure it is an informed decision...

I have seen situations where people were very fearful of chemo because of their knowledge from years ago and then breeze (relatively) the blasted thing... I have seen people from this angle that do very very well in terms of chemo side effects. It is not a walk in the park.. but okay, and this is on every chemo type.

On the other side, I see people that think they will breeze it and then it is brutal.

I have also seen people that find it brutal (my dad) and where we had to fight to come to normal (which we did). My dad though has now had a chemo too many (they upped the dose as well 4 weeks ago) and so you get the cumulative effect as well.

All I can say to you is that everyone is an individual and you mum could be one of any above. But. it is their choice and all you can do is open up and offer those choices. My dad is changing treatment now and I suspect he will give it a good blasting around nano so he can hopefully go fishing in the spring... without chemo for probably a while. This is my guess but if you read my thread I would not have even contemplated it from the start.

It is such an individual journey and with every one of us with people still fighting the battle and those who lost their loved ones to the battle.. the one thing I have learned is not one path is the same.

Just learn, inform, and let them choose what they want to do. Most importantly, enjoy the special moments when you reach a new normal. x

Marmalade

Re: can you have nanoknife without chemo?

Postby Marmalade » Wed Jan 11, 2017 11:35 pm

I agree with DG, it must be Mums decision and you must respect it. A lot depends on how well your Mum is and whether she has other health issues beside PC.

Many inoperable tumours can become operable with chemo as it can sometimes shrink it. Chemo is also used in palliative care in low doses to help manage pain and other symthoms so your Mum should think about what an oncologist has to say. Has she seen an oncologist? She can also stop chemo at any time if it becomes too much for her.

It would not be me if I didn't say that treatment is not for everyone, especially those with other complex health issues. The decision not to have life prolonging treatments is not 'giving up' and patients should not be made to feel that they are letting us down. Do contact your palliative care team and make sure you know what support is available, local hospices often have caring and coping courses where the patient and family members can learn about managing symthoms, finances, care options, and many other topic in a relaxed and non medical atmosphere. This is all very useful and reassuring irrespective of the choices your mum makes. My husband chose not to have chemo and my thread about his journey is called Our Journey without chemo' it's not gory and some people have said it has helped them be more confident about dealing with the final stages of this disease.

I hope you, your Mum and the family are coping ok,

Marmalade x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: can you have nanoknife without chemo?

Postby Elaine123 » Thu Jan 12, 2017 7:58 am

I agree with Marmalade this disease seems to have so many different forms on how it affects people on an individual basis that although we totally have their best interests at heart we can never fully be aware of their thoughts. Pete has pinned his hopes on chemo since day one and that is his choice but if further down the line he changes his mind as to what is best for him and stops treatment then that will be the way we handle this. I just feel if the person has been given all the facts and makes an informed choice then we have to accept that decision. I hope you find the best answer for your Mums situation and I wish you both all the best
Elaine
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