Search found 165 matches

by toodotty
Thu Aug 30, 2018 10:46 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

Re: Nano knife for Stage IV PC.

A quick update, I have been told in no uncertain terms that my MDT will not sanction this treatment and therefore I am unable to continue with it in the UK. I can go ahead and have it at some cowboy institute on the continent but not with a experienced specialist in the UK. I thought it was a free c...
by toodotty
Tue Aug 28, 2018 10:15 am
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

Re: Nano knife for Stage IV PC.

I am very upset this morning. :cry: My Nanoknife treatment has been postponed because of red tape. Due to some current reviews being undertaken, the medical profession is clamping down on private treatments. I can now only continue with Nanoknife if my MDT team discuss this and agree that this can b...
by toodotty
Fri Aug 24, 2018 9:18 pm
Forum: Family, friends and carers
Topic: Update on my dad - gemcitabine chemo
Replies: 8
Views: 13929

Re: Update on my dad - gemcitabine chemo

Hi dmschampion, I am so sorry to hear about your husband, it is shocking that he died as a result of a blocked bile stent and as you say, such a short period of time.
Sending you a virtual huge,
toodotty
xxx
by toodotty
Fri Aug 24, 2018 9:10 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

Re: Nano knife for Stage IV PC.

Hi All, Thank you for your replies, it is always a pleasure to read them. A couple of quick answers for Michaela, the cost of Nanoknife will depend on how much and how difficult it is to treat. Each treatment is likely to be in the range of 10-15K, most of this is to pay for the theatre and the thea...
by toodotty
Thu Aug 23, 2018 2:05 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

Re: Nano knife for Stage IV PC.

Hi All, Back from my Nanoknife treatment, 24 hours yesterday, and feeling better than I expected. the professor has ablated 3 liver tumours and had a good look at the pancreas. As expected, the previous A&E CT was unduly pessimistic about my condition, some of the things seen may have been directly ...
by toodotty
Mon Aug 20, 2018 12:09 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

Re: Nano knife for Stage IV PC.

2 days to go to Nanoknife. I had a very useful discussion with the Prof this morning. He is concerned that the last CT scan shows things as a lot worse than he expected. He particularly wanted to know how I was feeling in myself, and I feel better than I have for most of this year. I did say that I ...
by toodotty
Fri Aug 17, 2018 11:05 am
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 85
Views: 205298

Re: My mum - Stage 4 PC with liver mets

Hi Dee, Your mum will definitely need Creon and you will need to experiment with the amount. Don't be scared of it, the worse that is likely to happen is that she will get an itchy anus if using too much. She also will need more with fats and meat, don't be scared of 80,000. She shouldn't need it fo...
by toodotty
Fri Aug 17, 2018 10:57 am
Forum: Family, friends and carers
Topic: Sadness
Replies: 11
Views: 15023

Re: Sadness

Sending you my love Kerry,
I am so sad,

toodotty
by toodotty
Fri Aug 17, 2018 10:53 am
Forum: Family, friends and carers
Topic: Update on my dad - gemcitabine chemo
Replies: 8
Views: 13929

Re: Update on my dad - gemcitabine chemo

oWith Stage III cancer he should have a much better outlook and life expectancy than those of us with Stage IV. The weakness will be partly due to the sepsis but maybe diet related as well. I was really feeble at one stage because I just couldn't eat anything. Keep his strength up and his morale. Do...
by toodotty
Fri Aug 17, 2018 10:48 am
Forum: Patient Experience Forum
Topic: First folfirinox experience
Replies: 70
Views: 94367

Re: First folfirinox experience

Hi both, Great that you are both showing positive improvements, this mirrors my own experience. After round 6 I can say that I feel better than I have since February when this all kicked off. I am even able to eat a bit of meat again and my need for CREON has diminished, I am now only on 40,000 for ...
by toodotty
Fri Aug 17, 2018 10:43 am
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

Re: Nano knife for Stage IV PC.

Hi Michaela, I have had the full 6, though 3 were reduced rounds, (2 because of jaundice and 1 because the bottle leaked down my T-shirt for 8 hours, oops!) Feeling better than ever, about to go out on my bike for the first time since diagnosis, hopefully 10 miles to go and pick up my CREON prescrip...
by toodotty
Thu Aug 16, 2018 1:05 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

Re: Nano knife for Stage IV PC.

Hi All, Long awaited appointment with Oncologist today but unfortunately they have not been able to view my CT scan which is at another hospital. They have not been able to download it successfully and despite me hand delivering a copy on disk yesterday, this has not been reviewed either. Hugely dis...
by toodotty
Wed Aug 15, 2018 5:10 pm
Forum: Patient Experience Forum
Topic: First folfirinox experience
Replies: 70
Views: 94367

Re: First folfirinox experience

Hi, CA19-9 is a blook marker for pancreatic cancer but is not reliable. Mine have been showing as less than 2 from day 1, none of my blood tests show any cancer like infection, so I wouldn't get too hung up about it. Your Oncologist will let you know if it is an issue. Glad that round 2 is out of th...
by toodotty
Tue Aug 14, 2018 3:30 pm
Forum: Patient Experience Forum
Topic: Patient View
Replies: 0
Views: 7908

Patient View

Hi All, Having recently had a spell in hospital with a blocked bile stent, I was extremely shocked to discover that the hospital treating me did not have access to any of my medical records, which were held under a different NHS trust. This was especially problematic as it was the weekend and there ...
by toodotty
Tue Aug 14, 2018 3:17 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

Re: Nano knife for Stage IV PC.

Hi All, First Nanoknife booked for next week, initially to attack the liver tumours, the pancreas to be targeted the following week. Not sure how my Oncologist is going to take this, I was unable to make my last appointment as I was in hospital with a blocked bile stent, but I guess I will find out ...

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