Search found 165 matches

by toodotty
Thu Jan 31, 2019 9:53 am
Forum: Family, friends and carers
Topic: Does it get easier?
Replies: 7
Views: 5959

Re: Does it get easier?

Thank you Jeni.

Erika
by toodotty
Thu Jan 31, 2019 9:50 am
Forum: Advanced pancreatic cancer
Topic: Unusual presentation
Replies: 2
Views: 3439

Re: Unusual presentation

Hi Natalie, Firstly the cancer marker is only accurate in only 90% of cases. I didn't show any cancer markers at all despite being stage IV PC. It is great that your dad is fit and well and he now needs to keep his fitness and nutrition levels up because if it is cancer then the fitter he is the bet...
by toodotty
Thu Jan 31, 2019 9:45 am
Forum: Advanced pancreatic cancer
Topic: update/advice
Replies: 1
Views: 2524

Re: update/advice

Hi Theresa, Fantastic news about the tumour shrinkage, the chemo looks like it is really working. Let the Oncologist know about the side effects they may be able to adjust your general drugs to help rather than reduce the chemo. However, I did have 2 rounds of reduced chemo as I had jaundice, I thin...
by toodotty
Mon Jan 28, 2019 11:00 am
Forum: Family, friends and carers
Topic: The fight goes on
Replies: 5
Views: 3270

Re: The fight goes on

Wise words Annabelle about chasing appointments. I am glad your husband is tolerating Folfirinox reasonably well as it is the best regime in terms of outcome. I you haven't done already, research Milkthistle, available from any healthshop in tablet format. I used this on my second cycle of chemo (Fo...
by toodotty
Sun Jan 27, 2019 4:07 pm
Forum: Family, friends and carers
Topic: My husband Dan
Replies: 15
Views: 9535

Re: My husband Dan

Hi Fernack45, The first couple of rounds are the worst, it is a big shock to the body all those toxins. Your Oncologist knows what he/she is doing if they are dropping one of the chemos, (irinocetan, I call liquid flu, it makes me feel absolutely dreadful and I missed it out on 2 cycles as well). Yo...
by toodotty
Sun Jan 27, 2019 3:55 pm
Forum: Ask the nurse
Topic: Extreme Exhaustion
Replies: 4
Views: 5588

Re: Extreme Exhaustion

Hi Vickif, Do speak to the nurses they are extremely helpful. Also don't be afraid of chemo, there are lots of horror stories about it, but I went from being almost bed bound to having a new lease of life after four rounds. Yes there were side effects but the Oncologist was able to manage and advise...
by toodotty
Sun Jan 27, 2019 3:49 pm
Forum: Family, friends and carers
Topic: Does it get easier?
Replies: 7
Views: 5959

Re: Does it get easier?

Hi Charlotte, I am glad this has helped you. People tend to forget that when one person is diagnosed with pancreatic cancer that more than one person is seriously affected by the diagnosis. I really do feel it is harder for everyone else to absorb and cope with. When I am gone that is it, but everyo...
by toodotty
Sat Jan 26, 2019 12:12 pm
Forum: Family, friends and carers
Topic: Does it get easier?
Replies: 7
Views: 5959

Re: Does it get easier?

Hi Ashc101, I am stage IV PC 56 wife and mother to two young adults. My husband has been totally crushed by the diagnosis and I know spent weeks sobbing in private, he was totally shredded. I would see him walking about with his head bowed and the weight of the world on his shoulders. We had been ta...
by toodotty
Fri Jan 25, 2019 2:39 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 29736

Re: Nano knife for Stage IV PC.

Hi Keithkerry, There is so much arrogance and pig-headedness amongst many of the medical professionals who do not seem to understand that even the chance of extending life will be grasped. If they take the view "there is no point in doing this treatment because you will still die anyway", then why n...
by toodotty
Thu Jan 24, 2019 7:17 pm
Forum: Treatment & side effects
Topic: Ascites
Replies: 0
Views: 3489

Ascites

Hi everyone, I have been suffering from Ascites since Christmas and have had 4 tedious admissions to hospital to treat this. In the last month I have had 20 litres of fluid drained off (in total) and now have a rocket drain fitted. I am finding it really hard to eat as I am constantly filling up wit...
by toodotty
Thu Jan 24, 2019 5:32 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 29736

Re: Nano knife for Stage IV PC.

Hi All, Been off line for a bit as I have been to sunny Florida for open Nanoknife surgery in December. It was a much more brutal procedure than I had expected but the surgeon was extremely thorough and zapped anything that looked at all suspicious. So the pancreas, liver and peritoneum were all tre...
by toodotty
Thu Jan 24, 2019 5:23 pm
Forum: Patient Experience Forum
Topic: Any information would help
Replies: 5
Views: 4466

Re: Any information would help

Hi Week 20,
I think that there may be a clinical trial available at the Christie Hospital in Manchester for Stage III patients using Nanoknife to peel the tumour away from the vessel. May be worth a follow up?

Erika
by toodotty
Thu Jan 24, 2019 5:20 pm
Forum: Advanced pancreatic cancer
Topic: This evil disease
Replies: 14
Views: 7625

Re: This evil disease

Dear drtzzr1100,
I am so sorry to hear your terrible news and I am thinking of you and your family.

Erika
by toodotty
Thu Jan 24, 2019 5:16 pm
Forum: Advanced pancreatic cancer
Topic: Disapointed
Replies: 6
Views: 3600

Re: Disapointed

Hi Theresa, I am so sorry to hear about your disappointment. I had exactly the same, a week after my scan we turned up for review and it hadn't been done. I told the Oncologist in no uncertain terms that I was not impressed, my husband had taken a day off work and quite frankly it was just not good ...
by toodotty
Sat Dec 22, 2018 7:24 pm
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 105
Views: 70927

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

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