Search found 165 matches

by toodotty
Wed Oct 03, 2018 8:37 pm
Forum: Ask the nurse
Topic: Creon Shortage
Replies: 5
Views: 13003

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
Wed Oct 03, 2018 2:27 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42409

Re: Folfirinox Round 7

Well, arrived early for my appointment with my husband, like a pair of eager beavers only to meet with more disappointment :cry: :cry: . They did not have the scan report from the radiologist so they could not comment on further treatment. My Oncologist didn't have the guts to tell me himself but se...
by toodotty
Tue Oct 02, 2018 7:19 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42409

Re: Folfirinox Round 7

Feeling down today, the biliary stent is causing me problems. I have been in pain for the last two weeks, especially at night. I cannot lie on my sides without a stabbing sensation, if I lie on my back after about 3 hours the same happens and I have to spend the rest of the night trying to sleep in ...
by toodotty
Tue Oct 02, 2018 7:08 pm
Forum: Patient Experience Forum
Topic: Just my story....Michaela1.x
Replies: 19
Views: 26299

Re: Just my story....Michaela1.x

Hi Michaela1, I am so sorry to hear that you have been so unwell, you really have been through the wars. I had 6 days in hospital due to an infected biliary stent and yes it did feel like prison. It was the most depressing and exhausting experience of my life and I wasn't even ill after 24 hours but...
by toodotty
Tue Oct 02, 2018 6:58 pm
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 105
Views: 129897

Re: This cruel disease

Hi Keithkerry,
That is indeed wonderful news, it is good to have something positive on the site for a change. Even better to get some normality back to your daughter's life.

Sending you all a big happy hug,
toodotty
by toodotty
Mon Sep 24, 2018 5:54 pm
Forum: Ask the nurse
Topic: Is this the end?
Replies: 2
Views: 9435

Re: Is this the end?

Hi Suzima61, Sadly I have had experience of jaundice and stents. I have had 3 stents in three months due to infections which can be sudden and very nasty. Firstly jaundice in itself will make your husband feel really lousy, a bit like having flu with terrible itching. Once fitted the bile should sta...
by toodotty
Sat Sep 22, 2018 10:50 am
Forum: Ask the nurse
Topic: Upset stomach
Replies: 2
Views: 11437

Re: Upset stomach

Hi Janmac, You could try camomile tea which will settle an upset stomach, it depends on what you mean by upset. I tried a vegan diet to cope with swinging from diarrhoea, stomach cramps & constipation and this has worked brilliantly for me. Also check out the medication, much of this causes the same...
by toodotty
Sat Sep 22, 2018 10:42 am
Forum: General chat
Topic: PET scan vs CT Scan accuracy
Replies: 2
Views: 8794

Re: PET scan vs CT Scan accuracy

Hi srshelly, Your dad is a similar age to me and young to have pancreatic cancer. The further through this process I go, (I have had 7 cycles of Folfirinox), the more I realise how much is guess work and supposition when it comes to test results. My CA 19-9 marker was zero at diagnosis, in fact all ...
by toodotty
Wed Sep 19, 2018 11:50 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42409

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: 8233

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: 3
Views: 11769

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: 40
Views: 42409

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
Thu Sep 06, 2018 2:19 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 49953

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: 105
Views: 129897

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: 85
Views: 205301

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...

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