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Joanna
Posts: 13
Joined: Sat Jul 23, 2016 8:42 am

Re: Advice re nanoknife

Postby Joanna » Sun Jul 31, 2016 1:53 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Advice re nanoknife

Postby Proud Wife » Sun Jul 31, 2016 3:57 pm

The very best of luck for Tuesday Joanna.

Love PW xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Advice re nanoknife

Postby Veema » Sun Jul 31, 2016 6:13 pm

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
Posts: 13
Joined: Sat Jul 23, 2016 8:42 am

Re: Advice re nanoknife

Postby Joanna » Sun Aug 21, 2016 1:51 pm

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

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Advice re nanoknife

Postby Didge » Sun Aug 21, 2016 8:32 pm

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
Posts: 13
Joined: Sat Jul 23, 2016 8:42 am

Re: Advice re nanoknife

Postby Joanna » Sun Aug 21, 2016 10:19 pm

Thanks Didge, sorry to hear about your partner

Joanna
Posts: 13
Joined: Sat Jul 23, 2016 8:42 am

Re: Advice re nanoknife

Postby Joanna » Sat Oct 08, 2016 5:28 pm

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
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Advice re nanoknife

Postby Veema » Sat Oct 08, 2016 6:40 pm

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Advice re nanoknife

Postby Wife&Mum » Sat Oct 08, 2016 7:41 pm

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

Joanna
Posts: 13
Joined: Sat Jul 23, 2016 8:42 am

Re: Advice re nanoknife

Postby Joanna » Mon Oct 10, 2016 10:02 pm

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

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Advice re nanoknife

Postby Dandygal76 » Tue Oct 11, 2016 9:47 am

Joanna, I would say take a good multivitamin and with dad I always give he strong B vitamins to protect against fatigue and neuropathy. If you do this though increase gradually or you get the niacin flush which is harmless but will freak out. My thread does say somewhere the ones I give dad in drop form and I did a quarter of the dose and upped a quarter each week. I truly believe the b vitamins have helped my dad as he is now the last one on the trial still tolerating abraxane and the others we saw were in a bad way before they got taken off the abraxane. It is particularly B12 that I was going for. The doctors on the trial are surprised he is is still tolerating well.

I also agree a good walk does help with energy levels but in the early days my dad could not manage that at all.

The only other thing we found helpful was the anti depressants. If he is feeling particularly tired and wants to do something he also takes a steroid but they can wreak havoc on blood sugar in some.

Saying all of the above, my dads energy have not gone up to anywhere near what he was. He was a very strong man and con now do about 2 hours max on my sons bedroom and needs a rest day in-between. The crazy man is up there now lobbing bits of wood out of the window (too tired for clearing up as well!). But, this is well forwards from the man underneath a blanket 24/7 and who nearly quit a couple of months into it all after having the most shocking melt down.

I would just say keep trying this and that and hopefully there will be an individual solution to help your dad but it really is trial and error.

xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Advice re nanoknife

Postby Dandygal76 » Tue Oct 11, 2016 12:38 pm

Joanna I just wanted to say as well that dad, even though he gets tired from doing decorating and over exertion, does have a nice quality of life now. He just gets tired but is quite happy to read, snooze, potter about, snooze, walk, snooze... etc etc. He is not exhausted like he was. So, although I said we never got him back to strength, he is good and things are okay.

I was sorry also to hear about your dad's progression on the trial. That must have been disappointing for you all. As my dad's exhaustion came from Abraxane I am hoping he may be one of these that tolerates The Fox when his time comes.

Hopefully your dad will respond to the Fox. I also wanted to mention that when my dad got overly tired one time we found out it was infection as he got more tired over a few days - I am sure you are watching for this but just in case because there was no temperature with my dad until he literally went down hill in front of us.

I wish I had more experience of Folfirinox to offer up our knowledge but I can only go from the Abraxane side of things and my dad's extreme side effects of this at the beginning.

Joanna
Posts: 13
Joined: Sat Jul 23, 2016 8:42 am

Re: Advice re nanoknife

Postby Joanna » Sat Oct 15, 2016 12:41 pm

Thanks Dandygal for your help. I am trying to get him to take a few extra vitamins but is very difficult given that he takes quite a few other tablets anyway, he finds it hard to have to take even more! Yeh my dad is also on antidepressants now and on steroids.

Thats really good news your dad is still doing well on the abraxane. It sounds like he's doing amazing with being able to work on your sons bedroom.

Yes it was very disappointing when he was progessing on the trial. Am hoping the folfrinox is going to work. He's also having the nano-knife next week.