Search found 151 matches

by toodotty
Sat Dec 22, 2018 7:24 pm
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 70
Views: 25523

Re: This cruel disease

Hi KeithKerry,
Good luck for Monday. I did post a reply yesterday which seems to have got lost. If you want to contact me direct about Nanoknife, then please ask the nurses to pass on my email address. I am more than happy to share what experiences I have had.

Erika
by toodotty
Thu Dec 20, 2018 11:44 pm
Forum: Advanced pancreatic cancer
Topic: My big brother
Replies: 22
Views: 4395

Re: My big brother

Hi both, I became jaundiced 3 days before I started chemo so had full dose Folfirinox with a blocked bile duct. The speed with which the jaundice disappears depends on the stent fitted, the plastic stents do not work as well as the metal ones. I had a plastic stent due to a nickel allergy but my onc...
by toodotty
Thu Dec 20, 2018 11:25 pm
Forum: General chat
Topic: First radiotherapy
Replies: 10
Views: 2098

Re: First radiotherapy

Sorry I cannot advise, this is a course of treatment that I am not aware of. Erika.
by toodotty
Thu Dec 20, 2018 11:20 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 9894

Re: Folfirinox Round 7

Hi everyone, my you have been very busy whilst I have been away. Lots of good advice as always, sorry KeithKerry to hear that there are some liver lesions on your daughter's scan, don't be afraid of chemo. I have been better on the 2nd course because I was fit and well, whereas I was really quite il...
by toodotty
Fri Dec 07, 2018 9:22 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 9894

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: 22
Views: 4395

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: 649

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: 22
Views: 4395

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: 1264

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: 2276

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: 1325

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: 2276

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: 1043

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: 1679

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: 40
Views: 9894

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...

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