Search found 165 matches

by toodotty
Tue Nov 20, 2018 11:29 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42049

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: 40
Views: 42049

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: 15
Views: 19887

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...
by toodotty
Sun Nov 18, 2018 6:03 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42049

Re: Folfirinox Round 7

Round 11 of Folfirinox went well last Friday despite the stinky cold that I have had for two weeks. Immune system was fine and they were OK for me to go ahead which surprised me as I had been feeling pretty grim for about 10 days. Nearly at Round 12 and my fingers and toes are still working, so Dr D...
by toodotty
Sun Nov 18, 2018 5:48 pm
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 85
Views: 204263

Re: My mum - Stage 4 PC with liver mets

Hi Dee123, Try your mum on Milk Thistle, this can diminish some of the side effects. I also am more nauseous around chemo time and need to stay away from any diary products at all for at least a week. This time I felt sick before I even started chemo, what is that all about? Herbal tea such as camom...
by toodotty
Sun Nov 18, 2018 5:41 pm
Forum: Ask the nurse
Topic: Deleted post
Replies: 1
Views: 7748

Re: Protocol for treating diabetes

Freaki,
Sorry to hear about your Dad, this is not my area of expertise at all. Give the nurses a ring in the morning, if they don't know the answer they will try and find out for you. Erika.
by toodotty
Wed Nov 14, 2018 6:32 pm
Forum: General chat
Topic: Sign the petition
Replies: 15
Views: 19887

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: 22223

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: 8802

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: 8802

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: 9222

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: 9222

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: 85
Views: 204263

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: 32
Views: 68705

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: 13800

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...

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