Search found 761 matches

by Dandygal76
Mon Dec 10, 2018 8:46 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 30
Views: 5771

Re: Folfirinox Round 7

Erika, good luck lovely warrior. I hope these holidays not only bring you hope around the nano but also peace and happiness with your family in these times that seem so precious. My thoughts will be with you and routing you through to those 5 years that more and more seem to make. You are a strong l...
by Dandygal76
Mon Dec 10, 2018 8:14 pm
Forum: General chat
Topic: Sign the petition
Replies: 12
Views: 1200

Re: Sign the petition

Hi Jeni - did you have any luck with this? I really would be able to get so many more signatures if I could have a leaflet and a form.
by Dandygal76
Fri Nov 30, 2018 12:56 pm
Forum: Advanced pancreatic cancer
Topic: Just diagnosed PC with spread to the brain
Replies: 3
Views: 643

Re: Just diagnosed PC with spread to the brain

I would get a second opinion... brain metastasis is uncommon. We did everything and everything out there to get my dad treated and then they thought it had gone to his brain. It took a few weeks for them to then think it was something else, and then another thing entirely differently. I am just want...
by Dandygal76
Tue Nov 20, 2018 10:59 pm
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 30
Views: 8623

Re: My mum - Stage 4 PC with liver mets

I am on catch up... Dee, has your mum got onto Emend yet? Also, if your mum is 'thinking' sickness then speak to the nurses. We had a big problem with dad called 'anticipatory sickness'.. he just associated a situation in his head and was very nausea's or sick. It is very well documented and you sho...
by Dandygal76
Tue Nov 20, 2018 10:41 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 30
Views: 5771

Re: Folfirinox Round 7

Thank you for taking the time out Erika to reply to me. If the surgeon has done so many ops then does he have any statistics on stage 4 pc or any published research? I have limited research of open surgery nano other than through NK Warriors (who are a fab group) and so cannot comment more other tha...
by Dandygal76
Tue Nov 20, 2018 9:50 pm
Forum: General chat
Topic: Sign the petition
Replies: 12
Views: 1200

Re: Sign the petition

Hello PCUK nurses.. can you please make a printable leaflet as well and put it on the petition page. I have distributed the link far and wide and got dozens of signatures I think. I really get this petition. But, online doesn't work for everyone as a marketing tool and I also have access to various ...
by Dandygal76
Tue Nov 20, 2018 10:48 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 30
Views: 5771

Re: Folfirinox Round 7

Toodotty - I have just read your post on the medical insurance front. I am afraid I cannot help with that because I think you will have difficulty as you are going for a medical procedure and with dad we was just going to risk no insurance for a holiday. However, I am wondering - why are you not loo...
by Dandygal76
Sun Oct 07, 2018 6:14 pm
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 61
Views: 19239

Re: This cruel disease

Re Furry Fox. We made the same choice with dad... Furry Fox can be a second line treatment but I have not seen it for Abraxane. We just left it too late for Furry Fox when we should have changed when the CA19 markers started to rise 3 months prior to him dying. The rationale I think is right... just...
by Dandygal76
Sun Oct 07, 2018 6:09 pm
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 61
Views: 19239

Re: This cruel disease

Just a quick look at the forum whilst waiting. If you are planning a holiday abroad go to Dr's and get some broad spectrum and very strong antibiotics etc. The doctor will know what to give so you have emergency things. You need an emergency pack - including extra creon to last a few weeks if hospit...
by Dandygal76
Thu Oct 04, 2018 8:44 am
Forum: Patient Experience Forum
Topic: CA19-9 importance?
Replies: 4
Views: 1490

Re: CA19-9 importance?

Michaela - I would phone the nurses. Sorry to have a negative opinion and there are benign reasons you can get rising markers like this but in my experience, in pretty much every case I have known, it is because the cancer is growing. I made this mistake with dad but I am not just going by that - I ...
by Dandygal76
Thu Oct 04, 2018 12:45 am
Forum: Family, friends and carers
Topic: My mum - Stage 4 PC with liver mets
Replies: 30
Views: 8623

Re: My mum - Stage 4 PC with liver mets

Hey Dee, I am signing off now but do not give up any nausea / sickness until you try the expensive and elusive Emend (the nausea may increase as chemo carries on). They will do everything else first (naturally) but when I said to dad's trial.. time for Emend the doctor actually smiled and then presc...
by Dandygal76
Thu Oct 04, 2018 12:28 am
Forum: Family, friends and carers
Topic: Dealing With The Loss
Replies: 10
Views: 2209

Re: Dealing With The Loss

Oh Veema.. I still go to pick up the phone to my dad now. Hey Mr AGiles.. read my thread on my fight for my dad. People will be surprised (veema et al included) that me and my dad never got on and he did not get my rebellious streak. But, as you love your own son, so did your dad love you. We just n...
by Dandygal76
Thu Oct 04, 2018 12:09 am
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 61
Views: 19239

Re: This cruel disease

Excellent news. We all got the scanxiety (as we called it) before results. Enjoy this moment, enjoy your holidays, enjoy your family. I know you will be concerned her not having chemo but it is only now (that I am not a rabbit in the headlights) that I really understand the science of it. If it is n...
by Dandygal76
Wed Oct 03, 2018 11:53 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 30
Views: 5771

Re: Folfirinox Round 7

Toodotty - was it you I said to get my e-mail address and I would help? I ended up unexpectedly away from work. Please ask PCUK for my e-mail and contact me. GDPR is a nonsense anyway to start with in these circumstances. They have a duty of care to not be negligent and to allow you to make informed...
by Dandygal76
Wed Oct 03, 2018 11:35 pm
Forum: Ask the nurse
Topic: Whipple imminent, mass in head of pancreas - is this still classified as cancer
Replies: 12
Views: 8950

Re: Whipple imminent, mass in head of pancreas - is this still classified as cancer

Parker - you are in the best place. At least you are not an outpatient which really takes a long time. I would ask for a PET scan - or do it privately (if you can afford it). I have found all the London hospitals quite linked to be honest with Harley Street (Bit of a boys club going on there). It wo...

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