Search found 83 matches

by toodotty
Wed Sep 19, 2018 11:50 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 1
Views: 430

Re: Folfirinox Round 7

It is never good to feel smug. Just when I was thinking it was all going along nicely, I end up back in A&E with biliary sepsis (infection) and problems with the dreaded plastic stent again. Soooo many blood tests, more antibiotics and virtually the last rites from the A&E Registrar, "Yes I do expec...
by toodotty
Fri Sep 14, 2018 12:19 pm
Forum: Family, friends and carers
Topic: Travel insurance...
Replies: 2
Views: 431

Re: Travel insurance...

Mrs Happy, As a PC sufferer myself I tend to only book either day trips or things last minute. How you feel can change from hour to hour so it is probably best not to look too far ahead. It is frustrating as you do have to live for the minute! I hate letting people down so I don't put this pressure ...
by toodotty
Sun Sep 09, 2018 10:08 pm
Forum: Patient Experience Forum
Topic: Nano Knife for Stage 3 inoperable PC
Replies: 1
Views: 488

Re: Nano Knife for Stage 3 inoperable PC

Hi Nellie, thanks for sharing this. Unfortunately a lot of Oncologists are entrenched in the past and poo-poo anything that hasn't been through a NICE clinical trial. I have heard that there is a clinical trial now available for Stage III PC sufferers but so far only 3 people are on it. For anybody ...
by toodotty
Sun Sep 09, 2018 3:06 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 1
Views: 430

Folfirinox Round 7

Hi my fellow Folfirinox travellers, I started round 7 on Friday having been kindly informed by Dr Doom that the side effects would be much worse this time and that I will probably lose the use of my fingers and toes. Thanks for that cheery news mister .... I am taking a much more upbeat approach; fi...
by toodotty
Fri Sep 07, 2018 1:49 am
Forum: Ask the nurse
Topic: Creon Shortage
Replies: 5
Views: 2333

Re: Creon Shortage

Hi Florence,
See if you can get them from the hospital treating you. My hospital came up with the 40,000 and didn't even seem aware that it was a problem.

toodotty
by toodotty
Thu Sep 06, 2018 2:19 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 36
Views: 5598

Re: Nano knife for Stage IV PC.

Well Nanoknife is now off the agenda, I cannot get treatment in the UK as my MDT will not approve it. If I want this I will have to go abroad. In the meantime I will return to chemotherapy tomorrow, round 7 though I have been told that the side effects are likely to be worse due to the build up of t...
by toodotty
Tue Sep 04, 2018 11:23 am
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 36
Views: 8973

Re: This cruel disease

KeithKerry,
Absolutely delighted that your daughter is responding so well. Why wouldn't she? She is young, has a very supportive family and even reason to keep fighting to live. Keep writing your own story!
Toodotty
by toodotty
Tue Sep 04, 2018 11:14 am
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 12
Views: 2381

Re: My mum - Stage 4 PC with liver mets

Hi Dee123, So glad that your mum is feeling better, the chemo, though hideous at the time, can make a real difference. Re cold fingers and toes, make sure that she wears thick gloves and socks to prevent this from happening. It can cause long lasting damage if you don't keep it in check at this stag...
by toodotty
Thu Aug 30, 2018 10:46 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 36
Views: 5598

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: 36
Views: 5598

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: 1772

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: 36
Views: 5598

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: 36
Views: 5598

Re: Nano knife for Stage IV PC.

Hi All, Back from my Nanoknife treatment, 24 hours yesterday, and feeling better than I expected. Prof L 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 related...
by toodotty
Mon Aug 20, 2018 12:09 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 36
Views: 5598

Re: Nano knife for Stage IV PC.

2 days to go to Nanoknife. I had a very useful discussion with Prof L 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 wo...
by toodotty
Fri Aug 17, 2018 11:05 am
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 12
Views: 2381

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...

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