Search found 13 matches

by Muzzy64
Sun Aug 03, 2014 4:14 am
Forum: Patient Experience Forum
Topic: Black seed Oil
Replies: 3
Views: 5822

Black seed Oil

http://www.sciencedaily.com/releases/20 ... 092215.htm

Anyone ever used Black seed oil, quite a claim made in this article.
by Muzzy64
Fri Aug 01, 2014 7:00 am
Forum: Patient Experience Forum
Topic: CA19-9
Replies: 2
Views: 4968

CA19-9

My CA19-9 count has gone down from 14,000 to 11,000 in the 4 weeks since changing from Folfirinox to Gemcitabine. Not sure what this means but I suppose it's good news?
by Muzzy64
Sun Jul 27, 2014 3:36 pm
Forum: Patient Experience Forum
Topic: Muzzy64 Update
Replies: 4
Views: 5062

Muzzy64 Update

As I've already posted on forum had to change from Folfirinox to Gemcitabine due to slight spread of liver mets after round 4 of Folfirinox. Also at the beginning of my treatment ( late March 2014) the consultant decided not to start me on prophylactic anticoagulants and after 3 rounds of treatment ...
by Muzzy64
Sat May 24, 2014 12:33 am
Forum: Patient Experience Forum
Topic: Have had to change from Folfirinox to Gemcitabine
Replies: 11
Views: 9411

Have had to change from Folfirinox to Gemcitabine

I'm 49 years of age, have 4 wonderful teenage kids and was diagnosed with inoperable pancreatic cancer (liver mets) in early March 2014 Today 2 weeks after my 4th round of Folfirinox I have been told I'm swapping to the Gemcitabine regime. In reality I have reacted to the Folfirinox very badly indee...
by Muzzy64
Fri May 09, 2014 6:56 am
Forum: Patient Experience Forum
Topic: Increase in liver pain.
Replies: 5
Views: 5260

Re: Increase in liver pain.

Having one in a few weeks. Consultant didn't seem to think that increase in pain was indicative of mets getting bigger, he said it could be the result of numerous different things ( even shrinkage ), but to me increase in liver pain = increase in size.
by Muzzy64
Thu May 08, 2014 9:17 pm
Forum: Patient Experience Forum
Topic: Increase in liver pain.
Replies: 5
Views: 5260

Increase in liver pain.

Increase in liver pain after round 4 of Folfirinox . Bit frightened. No other symptoms ie weight loss or jaundice.
My diagnosis is 2cm tumour in pancreas and a few liver mets. Frightened this pain could indicate liver mets are getting larger.
by Muzzy64
Fri May 02, 2014 9:58 pm
Forum: Patient Experience Forum
Topic: Sore Mouth
Replies: 2
Views: 4509

Sore Mouth

On 4th Folfirinox cycle. Experiencing very sore mouth, finding it painful to swallow, any ideas about how I can get any relief?
by Muzzy64
Wed Mar 26, 2014 11:59 pm
Forum: General chat
Topic: Are there any support groups in London?
Replies: 3
Views: 4241

Re: Are there any support groups in London?

Thanks Cathy
by Muzzy64
Wed Mar 26, 2014 6:54 pm
Forum: General chat
Topic: Are there any support groups in London?
Replies: 3
Views: 4241

Are there any support groups in London?

I have just become aware of this online support forum for people with pancreatic cancer and imagine that I will be using it a lot over the next few months/ years (hopefully). I was wondering are there any face to face support groups for people with serious life threatening illnesses such as PC in Lo...
by Muzzy64
Wed Mar 26, 2014 4:37 pm
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 12
Views: 7815

Re: Just diagnosed

Just checked my regime. It's Irinotecan Hydrochloride 420mgs, and Oxaliplatin, then Folinic Acid, then Fluorouracil 900mgs, then a further 5475mg in a bottle over 46hrs. The care plan is called Folfirinox (Oxall-Torino-5FU).
by Muzzy64
Wed Mar 26, 2014 4:15 pm
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 12
Views: 7815

Re: Just diagnosed

Thanks everyone. MSH I'm under a Consultant called (edited by moderator - please see rules & guidance, we avoid using Consultant Trust names in the forum for protection of individuals) and he has a great reputation so I'm presuming the FOLFOX regime is what he uses. Googling it (which I must stop do...
by Muzzy64
Wed Mar 26, 2014 8:31 am
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 12
Views: 7815

Re: Just diagnosed

Thanks for all your kind words of support. I am a great believer in the power of positive thought. There are many examples of people beating the odds and I would imagine the majority of them stay focused. I'm amazed (for today at least) how calm I feel. My biggest fear in life was to possibly leave ...
by Muzzy64
Tue Mar 25, 2014 10:44 pm
Forum: Patient Experience Forum
Topic: Just diagnosed
Replies: 12
Views: 7815

Just diagnosed

My name is Peter, I'm a 49 year old husband and father of 4. Also a qualified nurse working in London ( off sick at moment ) What seems like a lifetime ago, probably about 6-8 weeks developed pain in right upper abdo. Everyone assumed gallstones. To cut a long story short after Ultrasound I was told...

Go to advanced search