Search found 147 matches

by toodotty
Fri Dec 07, 2018 9:22 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 30
Views: 5916

Re: Folfirinox Round 7

Well Round 12 over and done. Had a CT scan on Wednesday and unfortunately they found some very small blood clots on the lungs, "nothing to worry about" but I am now on blood thinners which I am having to self inject daily, for the next 6 months ….. I didn't get to see my Oncologist at the last meeti...
by toodotty
Fri Dec 07, 2018 9:05 pm
Forum: Advanced pancreatic cancer
Topic: My big brother
Replies: 11
Views: 1100

Re: My big brother

Hi BromsgoveSister, It really should not come as a surprise to the specialists that the disease has progressed, with pancreatic cancer this is what happens, and what happened to me. If your brother has jaundice then he will feel even worse, it is like having flu. Don't be afraid of the chemo, the fi...
by toodotty
Fri Dec 07, 2018 8:43 pm
Forum: General chat
Topic: Fund raising - Amazon Smile
Replies: 1
Views: 253

Re: Fund raising - Amazon Smile

Hi Kate,
This is really useful, I will post this on my Facebook account.

Erika
by toodotty
Mon Dec 03, 2018 10:42 am
Forum: Advanced pancreatic cancer
Topic: My big brother
Replies: 11
Views: 1100

Re: My big brother

Hi Bromsgrove Girl, I did post last night but the post has got lost, so I will start again. Firstly I am so sorry that you are having to join this forum because unfortunately it means that your brother is in desperate need of help and support, AND so are you. Firstly you are at the worst point of th...
by toodotty
Sat Dec 01, 2018 11:04 pm
Forum: Advanced pancreatic cancer
Topic: Just diagnosed PC with spread to the brain
Replies: 3
Views: 648

Re: Just diagnosed PC with spread to the brain

Paddy's sister,
I am so sorry to hear about your poor brother and I am sorry that I cannot offer any advice. All I can do is send you a virtual hug and my prayers.

Erika
by toodotty
Sat Dec 01, 2018 10:51 pm
Forum: General chat
Topic: Sign the petition
Replies: 12
Views: 1232

Re: Sign the petition

Thanks Cheryl, sorry about your husband, this is a truly horrific disease made worse by the fact you do not feel that the NHS is on your side. I was so angry about this I just wanted to do something about it. We now have nearly 46,000 signatures, so thank you for your support.


Erika.
by toodotty
Sat Dec 01, 2018 10:46 pm
Forum: Ask the nurse
Topic: Conflicting advice/medicine
Replies: 3
Views: 559

Re: Conflicting advice/medicine

Hi The_petal, I also have a cupboard full of medicines, most of which I no longer take. On chemo day and for the following three days I have Dexamethosone (anti-inflammatory) and also Ondansetron (anti-nausea) which I take on chemo day and the following day and that is it. I do not need the rest and...
by toodotty
Thu Nov 29, 2018 7:13 pm
Forum: General chat
Topic: Sign the petition
Replies: 12
Views: 1232

Re: Sign the petition

Hi All,
We are now at 42,000+ and still aiming for 50,000. So go and contact those people you may have over looked, and add details into your Christmas cards.

Best wishes,

Erika
by toodotty
Mon Nov 26, 2018 10:41 pm
Forum: Advanced pancreatic cancer
Topic: Getting confused with all the information
Replies: 3
Views: 484

Re: Getting confused with all the information

Hi Theresa, Firstly the stats that you are reading are four years out of date and things have moved on, even if our Oncologists haven't. One thing I have noted is that the people who survive the longest are the ones who do not follow the NHS pathway but do anything and everything in their power that...
by toodotty
Thu Nov 22, 2018 10:48 pm
Forum: Family, friends and carers
Topic: husband 50 months post diagnosis stage 4 - endoxan
Replies: 5
Views: 919

Re: husband 50 months post diagnosis stage 4 - endoxan

Wow, that is amazing. Sorry cannot help re endoxan, perhaps speak to the nurses? Though I suspect that you guys are in uncharted territory.
Erika
by toodotty
Thu Nov 22, 2018 10:44 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 30
Views: 5916

Re: Folfirinox Round 7

Hi Keithkerry, That is worrying indeed that there is nothing concrete planned for the New Year. Write to the Oncologist first to express your concerns, if this doesn't work then complain, you should be able to write to the CEO of the NHS trust that you are under, or PALS, Get reassurance that your d...
by toodotty
Tue Nov 20, 2018 11:36 am
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 30
Views: 8653

Re: My mum - Stage 4 PC with liver mets

Hi J9pkr, It will get easier, make sure you keep a diary of symptoms at the start, your mum will quickly learn about her good days and not so good days. Also things will change a bit which each cycle, generally for the better. I do find that having chemo is sometimes a bit like the early stages of p...
by toodotty
Tue Nov 20, 2018 11:29 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 30
Views: 5916

Re: Folfirinox Round 7

DandyGirl76, I have done much research into Closed and Open Nanoknife procedures in the months since my procedure was stopped due to NHS interference. It is clear that there is more risk and less chance of a successful outcome using the closed procedure versus open procedure. This does need to take ...
by toodotty
Tue Nov 20, 2018 11:17 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 30
Views: 5916

Re: Folfirinox Round 7

Hi KeithKerry, It is difficult not to worry about the big C even if it seems to have disappeared, it will always be there in the background. Your daughter just needs to listen to her body, any sign of change of digestion, even something as simple as "oh that seems to have given me indigestion, stoma...
by toodotty
Tue Nov 20, 2018 11:09 am
Forum: General chat
Topic: Sign the petition
Replies: 12
Views: 1232

Re: Sign the petition

Well done all, last count we were up to 26,000! So keep getting the message out there. I am also in today's paper, as part of this campaign. https://www.dailymail.co.uk/health/article-6407313/The-cancer-means-TWO-WEEKS-wait-surgery-wrecks-patients-chances.html Some really interesting stats coming ou...

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