Search found 165 matches

by toodotty
Thu Oct 18, 2018 10:25 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42048

Re: Folfirinox Round 7

Hi Michaela1, A chemo rest is basically a break from chemotherapy, which I took at the end of July so that I could fit in Nanoknife treatment. I ended up having the whole of August and September out of chemo, though I did have several hospitalisations due to the problems with my stent. As I was feel...
by toodotty
Thu Oct 18, 2018 10:13 am
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 28
Views: 29984

Re: Just diagnosed

Theresa, Good luck for today. They are pretty good at controlling the side effects with medication, so any problems speak to your cancer team. You may suffer from (even more) diarrhoea or constipation after chemo as your digestive system takes a big hit. Make sure you drink plenty and keep any food ...
by toodotty
Wed Oct 17, 2018 2:48 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42048

Re: Folfirinox Round 7

Hi Michaela1, I am taking Milkthistle to help with the side effects from Chemo and also to support the liver and it seems to be making a difference. I do get tingling but not as bad. Onto round 9 on Friday, I hope today went well. Only one more round for you before your review scan and maybe a short...
by toodotty
Wed Oct 17, 2018 2:45 pm
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 28
Views: 29984

Re: Just diagnosed

Theresa, what treatment are they offering you?
toodotty
by toodotty
Wed Oct 17, 2018 2:44 pm
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 28
Views: 29984

Re: Just diagnosed

AlanC, you will be irrational and out of your mind with worry. PC is not always a hopeless case but you must remain positive and keep fighting. If they do diagnose you, it is really important that you get into treatment quickly, the NICE guidelines are complete nonsense with an aggressive cancer lik...
by toodotty
Sun Oct 14, 2018 4:55 pm
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 28
Views: 29984

Re: Just diagnosed

Hi Theresa, I am so sorry to find you on this forum with Stage IV PC. Firstly, I am 56, also Stage IV and diagnosed back in March (also fit, active etc). Do not believe or accept the fatalistic attitude of most of the medics you will meet on this journey via the NHS. Your options on the NHS are extr...
by toodotty
Wed Oct 10, 2018 10:40 pm
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 105
Views: 128830

Re: This cruel disease

Hi KeithKerry, I don't know if you have visited Phillip Jax's website which is packed full of the latest stuff. It is a bit chaotic but worth working your way around it. https://pancreatic.altervista.org/ The key message I have in my mind now is to plan for the next step and have lots of "irons in t...
by toodotty
Wed Oct 10, 2018 10:26 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42048

Re: Folfirinox Round 7

Hi Michaela1, Thanks for your kind comments, we all have to keep fighting in our own way. Days 4/5 of cycle tend to be my down time, partly because I am seriously hyper on the steroids during chemo. Sort of forgot about that the last two days in the lovely weather, have spent two days gardening and ...
by toodotty
Sat Oct 06, 2018 11:49 pm
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42048

Re: Folfirinox Round 7

Round 8 yesterday went well. Even irinotecan dose which is like IV-flu was not so bad and apart from the hot/cold flushes I felt reasonably well. Felt sick overnight but this has settled down today, just light vegan meals and stomach feels fine. I had eradicated the pain in my side from my stent iss...
by toodotty
Sat Oct 06, 2018 11:39 pm
Forum: Family, friends and carers
Topic: This cruel disease
Replies: 105
Views: 128830

Re: This cruel disease

Hi KeithKerry, Thanks for the link, I haven't seen this link but it completely ties into what I feel about approaching any cancer. I have changed my diet, I am almost totally vegan and exercise on a regular basis (I did 70 miles over 5 days on my bike last week.) Everyone thinks I look fantastic, de...
by toodotty
Thu Oct 04, 2018 5:50 pm
Forum: Patient Experience Forum
Topic: Just my story....Michaela1.x
Replies: 19
Views: 26112

Re: Just my story....Michaela1.x

Hi Micheala1,
I hope Round 4 has gone well, I think this was the turning point for me. Certainly my pain disappeared at this point and I started to feel a lot brighter.

toodotty
by toodotty
Thu Oct 04, 2018 5:41 pm
Forum: Patient Experience Forum
Topic: CA19-9 importance?
Replies: 4
Views: 10896

Re: CA19-9 importance?

Hi Michaela1, A digital pulse (sorry this is a horsey term which is a sign of infection!), is basically a pulse where you wouldn't expect to have one. In my case it was visible in that my stomach was pulsating, like there was an alien living in it. My PDAC is in the head of the pancreas so I guess i...
by toodotty
Thu Oct 04, 2018 11:11 am
Forum: Patient Experience Forum
Topic: CA19-9 importance?
Replies: 4
Views: 10896

Re: CA19-9 importance?

Hi Michaela1, Firstly the CA 19-9 marker is only about 90% accurate and should not be read in isolation. I had no CA 19-9 markers at all at the start of my treatment, another reason PC was not diagnosed, but mine did rise during the course of treatment, this seems to be fairly normal I think. Don't ...
by toodotty
Thu Oct 04, 2018 10:57 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42048

Re: Folfirinox Round 7

Hi DandyGal, Thank you for your advice, believe me I have never written so many letters of complaint. What a terrible waste of my limited time but it is the only way to get things done. I did write to PALS as soon as I got back from my appointment and lo if I wasn't contacted by one of the Drs late ...
by toodotty
Thu Oct 04, 2018 10:56 am
Forum: Patient Experience Forum
Topic: Folfirinox Round 7
Replies: 40
Views: 42048

Re: Folfirinox Round 7

Hi DandyGal, Thank you for your advice, believe me I have never written so many letters of complaint. What a terrible waste of my limited time but it is the only way to get things done. I did write to PALS as soon as I got back from my appointment and lo if I wasn't contacted by one of the Drs late ...

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