Search found 129 matches

by toodotty
Wed Nov 14, 2018 6:32 pm
Forum: General chat
Topic: Sign the petition
Replies: 1
Views: 185

Sign the petition

Just a quick reminder to ask you to sign the petition and ask all friends, colleagues etc to sign as well. There has already been a tremendous response, 21,000+ as of last Monday but Pancreatic Cancer UK are aiming for 50,000. I have been working closely with these lovely people and they are absolut...
by toodotty
Wed Nov 14, 2018 6:28 pm
Forum: Patient Experience Forum
Topic: Just started Folfirinox
Replies: 16
Views: 3489

Re: Just started Folfirinox

Hi The Petal, Are you not having Oxaliplatin? It is not normally possible to have the cool cap because of the peripheral neuropathy (tingling toes, fingers etc), this would make it so much worse. Even a cool drink during chemo makes my lips go numb. About to have round 11 on Friday and my hair is gr...
by toodotty
Wed Nov 14, 2018 6:16 pm
Forum: General chat
Topic: Medical tourist insurance
Replies: 4
Views: 265

Re: Medical tourist insurance

Hi Kate2101, Firstly yes I will be there tomorrow and I am looking forward to meeting you. Re the disks I did send them FedEx (£52!), and they did get there. You might struggle to send electronically, the images were huge. We definitely need to compare notes, I think insurance is the biggest worry, ...
by toodotty
Mon Nov 12, 2018 9:51 pm
Forum: General chat
Topic: Medical tourist insurance
Replies: 4
Views: 265

Medical tourist insurance

Hi All, I am looking to travel to the USA for Nanoknife treatment to the pancreas. Can anyone recommend a company that effectively provides insurance for someone travelling abroad with the specific purpose of some form of treatment (health tourist)? I can get insurance for pre-existing condition but...
by toodotty
Mon Nov 12, 2018 9:43 pm
Forum: Ask the nurse
Topic: Large liver
Replies: 4
Views: 373

Re: Large liver

Hi Theresa, Milk thistle helps reduce some of the chemo side effects and also protects the liver. Certainly I have not lost my hair this time around and my liver function is almost normal despite all the chemo. So it looks like it is doing something. You can get it in tablet form from local healthfo...
by toodotty
Mon Nov 12, 2018 8:21 pm
Forum: Ask the nurse
Topic: Large liver
Replies: 4
Views: 373

Re: Large liver

Um interesting question Theresa. Are the liver tumours particularly large? I am not sure why they would make the liver bigger or if there is something else happening? Are you taking milk thistle to protect the liver? I am pleased that you are feeling fitter and stronger that is indeed a good sign th...
by toodotty
Wed Nov 07, 2018 5:28 pm
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 23
Views: 6940

Re: My mum - Stage 4 PC with liver mets

Dee123, That is indeed fantastic news I am so pleased for you both. Not being in pain will make a big difference as well, my pain went after about 4 cycles of Folfirinox and I have been feeling pretty well most of the time (got a stinky cold at the moment so today not so good!). Tell your mum to kee...
by toodotty
Wed Nov 07, 2018 1:11 pm
Forum: Advanced pancreatic cancer
Topic: Successful Surgery in Heidelberg Germany - Inoperable in UK
Replies: 29
Views: 33549

Re: Successful Surgery in Heidelberg Germany - Inoperable in UK

It is a rather sad state that we are still having to explore routes abroad because they are still not available in the UK. This post started how long ago, 6 years? and nothing has changed over here. Re Heidelberg, they are also on my radar, my mother is German and the German relatives have done much...
by toodotty
Tue Nov 06, 2018 1:12 pm
Forum: General chat
Topic: Feeling morbid!
Replies: 11
Views: 1253

Re: Feeling morbid!

Hi Michaela, I went to a Pancreatic Cancer Survivors Group in Nottingham recently and it was really helpful. The next one is next year I it is likely to be further north, Leeds or Manchester which might be possible for you. It was originally set up for Whipple survivors but they have expanded the gr...
by toodotty
Sun Nov 04, 2018 10:32 pm
Forum: General chat
Topic: Feeling morbid!
Replies: 11
Views: 1253

Re: Feeling morbid!

Fab, it would be great to meet up at the Marsden, at least you will recognise me! Though my hair seems to be thickening up which is against the run of expectations.

Erika (toodotty)
by toodotty
Sun Nov 04, 2018 10:06 am
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 61
Views: 18392

Re: This cruel disease

Thank you both for signing the petition and passing it on. No wonder the survival rates are so terrible when 70% of people receive no treatment at all. Keithkerry, you are at the stage I am rapidly approaching, what happens when I get past round 12 of Folfirinox? Having had to fight so hard to get t...
by toodotty
Sun Nov 04, 2018 9:41 am
Forum: General chat
Topic: Feeling morbid!
Replies: 11
Views: 1253

Re: Feeling morbid!

Hi Michaela1, Yoga seems like a good idea to help and will strengthen the body and help sooth the mind. It is a pretty S**T trip that we have hitched ourselves onto isn't it? I find it hard to try and be cheerful and support the rest of the family and I do get snappy and angry which isn't fair on th...
by toodotty
Sat Nov 03, 2018 1:12 am
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 61
Views: 18392

Re: This cruel disease

Hi All, Firstly thanks to DG about meds advice, I had thought about antibiotics but not even considered Creon. I found out on the weekend that these cost £1 a tablet (regardless of size) so make sure you take enough for emergencies as well and keep them in the hand luggage as they are sensitive to t...
by toodotty
Sat Nov 03, 2018 12:45 am
Forum: Patient Experience Forum
Topic: Just started Folfirinox
Replies: 16
Views: 3489

Re: Just started Folfirinox

The Petal, My Oncologist was happy for me to have chemo when is was only 1.3 and my white bloods cells were below the recommended level which did come as a bit of a surprise to me but I tolerated it well. I get a copy of each blood test result and have then on a spreadsheet with a commentary as to w...
by toodotty
Sat Nov 03, 2018 12:36 am
Forum: General chat
Topic: Feeling morbid!
Replies: 11
Views: 1253

Re: Feeling morbid!

Michaela1, We are all human and believe you me we all have bad thoughts as well as good. I have thrown the toys out of the pram on more than one occasion and done many of the "why me?" stomps through the woods. I have parked my cancer in an imaginary box and I try not to let it out too often. None o...

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