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So far so good!


Slewis7313
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Dear Steve,


I've just read that you had the NanoKnife procedure. I haven't been on the forum for a long time. Wow, so good news that you are doing so well! You are amazing, such an inspiration to all of us here. You and Margaret a very good team. It is much better that Margaret will do your PICC line flushing, it gives you more freedom. I did it for my husband and he always said to me that I was doing it much better than the nurses. What Leila just said that is a good advice in case it's hard to push, we were told the same and it happened a few times. First time I panicked but it was ok after.

Keep going, wonderful news!

Susanna x

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  • 3 weeks later...

Now on cycle 23 of 'The Fox'. So far ok and the Tumour Marker has dropped from 1328 to 1188. Not sure if it is down to the increased frequency of chemo and/or NanoKnife, but the important thing is that it is going down. I have a CT scan in around 3 weeks to see what effect the NanoKnife has had, so fingers crossed!


Steve

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Hi Steve, it's good to hear you're doing so well, you're an inspiration to us all. My husband is having Nanoknife on the 1st July, is there anything else he should know that we may not have already been told? He has had a really rough ride up to now, but hopefully things are picking up and yesterday he had his third Folfironox and seems to be doing better than the first two, so fingers crossed.


Sue

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Thanks for the comments


Sue, the team at the Hospital will look after you totally. It was not an unpleasant experience at all, other than some discomfort in the evening after the procedure which was managed well by the very attentive Nursing staff. I felt fully recovered by the time I was discharged the morning after the procedure. There is even a full Sky Sport and Movies selection on the TV, though not enough time to fully take advantage. Professor and the Anethtestist both visited me before the procedure and reassured me. They may tease you with the evening dinner menu, but after selecting the Lamb, I was told that I could only have a cold meal! It was however a very nice Smoked Salmon sandwich.


My Folfirinox likewise improved after each session, especially in the early ones.


Good luck!


Steve

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  • 3 weeks later...
Slewis7313

Apologies all round for my lack of activity here. Now I am back on 2 weekly Folfirinox (still minus Exoliplatin) I find myself very fatigued for the whole cycle. I am meeting my Oncologist on 9th, so will discuss the possibility of going back onto a 3 weekly regime. I had a CT scan on Monday and will also discuss next week with my Oncologist. I hope to see something positive from the scan that we can attribute to my Nanoknife on 6th May. Otherwise, things seem to be going OK and I certainly hope to have a bit more energy for our weekend in Paris on 10th July (I have a 3 week cycle to allow for this).


Steve


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Hi Steve ,

Hope they can sort out you feeling of fatigue you and Margaret enjoy gay paree ! Stay well ,stay positive and stay happy .

Emma x

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Hope you enjoy Paris Steve, and that the results are good enough to go back to your 3 weekly treatments, the fox is debilitating, I think its the cumulative effect, your body takes such a battering, take care sandrax

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Good to hear things are going well, and enjoy your trip to Paris. I'm on a three weekly cycle myself and it's very useful having the extra week. Strictly speaking without oxaliplatin it's Folfiri. I'm sure we have much to learn about how best to use this regime.

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I hope you have a great time in Paris, I love it there. Good luck for the scan results and fingers crossed you can spread out the treatment to 3 weeks again.

Rob

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  • 2 weeks later...

A couple of developments here in Wales. The CT scan showed the Liver to be clear and the original site to be the same size, though the mass could contain harmless scar tissue as the result of Nanoknife. Apparently, none of the scans can reliably show what is scar tissue. The scan also showed a constriction of some kind betweem the stomach and duodenum which would explain my occasional issues with sickness. I will be having a Barium meal test to better isolate the problem. I had this test a year ago, so they will be able to compare both sets of results. They may then consider a stent (by endoscopy) between the two organs to ease the passage of food. Chemo is still going ahead tomorrow.


I'll update you all later this week when I've got the Tumour Marker results.


Steve

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Well, the Tumour Marker was an unpleasant surprise. It has jumped from 1188 to 2314. I hope the Nanoknife is still the initial cause of this and that it will settle down again. I have emailed the good Prof. For his thoughts and will of course discuss with my Oncologist next week. I must not forget that both recent CT scans picked up nothing of immediate concern, so fingers crossed! If there are no answers, I think I'll be looking at a PET scan soonest!



Steve

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Hi Steve, sorry to hear that but didn't you have a high tumour marker once before that turned out to be a 'blip'? Hopefully same here.


Hope you continue to be well.


Regards

Julia x

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  • 3 weeks later...

Several developments here, but not perhaps what we wanted. The sickness has not improved, so I am to have a Barium meal test with a view to fitting a Stomach/Duodenum stent to help.


Perhaps more worrying is that my Tumour Marker is up again at 3125. My Oncologist is now convinced that my Folfiri is no longer effective and I am to switch to Gemcitabine/Abraxane as soon as funding can be sorted out.


The optimism after the NanoKnife is waning somewhat and the future seems uncertain for me at the moment. But.......we are still hitting it and I had previously responded well to Gemcitabine, so fingers crossed as ever!



Steve

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Hi Steve,

Sorry the news is not so good, but.. try not to let it get you down. I am sure after a few days that positivity will be back again, as you say you did well on the Gemcitabine last time and with the Abraxane added in hopefully you will knock its socks off again. Thinking of you and sending love to you and all your lovely family sandrax xx

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