Search found 165 matches

by toodotty
Tue Aug 14, 2018 3:06 pm
Forum: General chat
Topic: Fundraising for treatment - any advice
Replies: 6
Views: 11384

Re: Fundraising for treatment - any advice

Hi both, I have Stage IV PC as well including on the liver and other organs. I am due to have Nanoknife imminently, first to the liver and then to the pancreas. I may also have a shadow on my lung which requires further investigation. I am paying for my treatment out of my life insurance, which also...
by toodotty
Tue Aug 14, 2018 3:01 pm
Forum: Treatment & side effects
Topic: Supplements?
Replies: 4
Views: 13612

Re: Supplements?

Hi Michaela1, Your DR can prescribe Ensure drinks, which are multi-vitamin drinks. They come in a shake format (strawberry is nice) or a juice, such as orange etc. They take a bit of getting used to and can taste foul if you have a metallic taste in your mouth. I treat them as medicine and sip them ...
by toodotty
Sun Aug 12, 2018 1:30 pm
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 85
Views: 206650

Re: My mum - Stage 4 PC with liver mets

Hi Dee, Sorry to hear about your mum, as you have found there is little in the way of good news when it comes to Pancreatic Cancer. It is really important that your mum does not give up HOPE, despite what the medics say. There are people who live successfully for 2, 3 or 4 years with this cancer but...
by toodotty
Fri Aug 10, 2018 12:12 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 39
Views: 44710

Re: Battling to get treament

Hi All, Thank you for the support, I am feeling much better. 2 nights sleep and food has made a big difference. I lost 2kg in weight during my 6 days in hospital so I have some ground to make up. Just finished mucking out the ponies, about to have first lunch, I am so hungry. Hi Nurse Jeni, I totall...
by toodotty
Fri Aug 10, 2018 12:03 pm
Forum: Patient Experience Forum
Topic: First folfirinox experience
Replies: 70
Views: 95378

Re: First folfirinox experience

Hi Kate2101,

Good news, fits in with the pattern of treatment for me as well. By round 4 all pain had gone (and still has gone). Last night I even managed to eat some cheese! Currently in limbo until I see Dr Doom next week.

Well done,
toodotty
by toodotty
Thu Aug 09, 2018 9:53 am
Forum: Family, friends and carers
Topic: Can not believe I’m here again
Replies: 9
Views: 13906

Re: Can not believe I’m here again

Hi Staystrong,
Thinking of you and sending you a virtual hug. Kerry is absolutely right, unless someone has been through something like this themselves, then it is difficult for them to comprehend how you feel right now. I think that I would just feel completely overwhelmed.

toodotty,
xxx
by toodotty
Thu Aug 09, 2018 9:44 am
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 39
Views: 44710

Re: Battling to get treament

Thank you patrigib, your husband gives us all HOPE.

toodotty
by toodotty
Thu Aug 09, 2018 9:39 am
Forum: Treatment & side effects
Topic: Severe distention and tightness
Replies: 18
Views: 24162

Re: Severe distention and tightness

Hi Michaela, Make sure you either take your notes with you, or you create a summary of your treatment so far. This is especially true if you are being treated at a different hospital to your cancer centre. It is really difficult for the doctors to make anything other than a general assumption about ...
by toodotty
Tue Aug 07, 2018 6:44 pm
Forum: Ask the nurse
Topic: Patient View
Replies: 2
Views: 9361

Re: Patient View

Hi Jeni,
Right I will investigate, would be good if we were not at the end of the queue for once! Might need to upgrade my retro Nokia phone though ....

Erika
by toodotty
Tue Aug 07, 2018 6:41 pm
Forum: Treatment & side effects
Topic: Severe distention and tightness
Replies: 18
Views: 24162

Re: Severe distention and tightness

Hi Michaela, By exercise I mean walking, especially after having just eaten. Let gravity to the work, it doesn't have to be miles just a walk around the garden a couple of times, as much as you feel comfortable with. As you get through chemo then increase your distance or find a nice walk you can do...
by toodotty
Mon Aug 06, 2018 11:01 pm
Forum: Ask the nurse
Topic: Patient View
Replies: 2
Views: 9361

Patient View

Hi lovely nurses at Pancreaticcancer.org, Have any of you heard of an APP called PatientView? I am on a ward with a transplant patient and she has it on her phone. I allows her to see all of her blood test results and shows all sorts of useful things, such as providing a graph of your CA19-9 test ac...
by toodotty
Mon Aug 06, 2018 10:51 pm
Forum: Patient Experience Forum
Topic: Battling to get treament
Replies: 39
Views: 44710

Re: Battling to get treament

Best laid plans ...... Got to the cinema on Thursday to watch Mama Mia, yes cheesy but a bit of fun, but I didn't feel 100%. This was a big thing for me as I haven't been able to sit for about 3 months without a lot of pain. I had a nagging pain on the right hand side under the rib cage all day, and...
by toodotty
Mon Aug 06, 2018 10:23 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 50597

Re: Nano knife for Stage IV PC.

Hi Veema,
I have been told in no uncertain terms that once Stage IV, always Stage IV and therefore no chance of Whipples. This is not only my hospital but also a private surgeon (also working out of {name removed - moderator} hospital).

toodotty
by toodotty
Mon Aug 06, 2018 10:22 pm
Forum: Patient Experience Forum
Topic: Nano knife for Stage IV PC.
Replies: 41
Views: 50597

Re: Nano knife for Stage IV PC.

Hi DG, Thank you for your input, it is really useful. Re trials there is very little available for Stage IV. There is a possibility of a POLO trial but that is dependant on a specific gene mutation. I believe that there may be a possibility of clinical trials for Nanoknife on locally advanced PC pat...
by toodotty
Sun Aug 05, 2018 7:52 pm
Forum: Treatment & side effects
Topic: Severe distention and tightness
Replies: 18
Views: 24162

Re: Severe distention and tightness

Hi Michaela, I had exactly the same symptoms, sometimes even when I hadn't eaten anything. I say it feels like the second stage of labour when you really do not know what to do with yourself. I have tried rocking on the toilet, on my hands and knees on the floor, pacing about etc. I do not use morph...

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