Just diagnosed

[Muzzy64]

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 it was probably fatty liver. 3 weeks later I have a diagnosis of small 2cms pancreatic cancer with a few mets in liver. My Dad died of the same in 2003. He was far worse than me physically when diagnosed, was given 3 months and survived 2 years. He was an expat in Spain and was given many courses of Gemcitabine I believe.

I had NHL in 2004 and was given a chemo treatment called CHOP. I made a full recovery. I have been told that the chemo I had then may have increased my chances of a secondary cancer plus the genetic link with my Dad.

My wife has been a marvel. I started my first of 6 FOLFOX regime chemo at Guys in London last week and side effects haven't been too bad. Steroids definitely helped for first 4 days, now feel quite lethargic but manageable. My picc line aches a bit under arm pit.

The odd thing is I generally don't feel too bad. Despite liver mets, no weight loss, no jaundice, no itchy skin, appetite not bad.

I am aware of the statistics but the way I feel just can't see myself going anywhere just yet. My biggest fear in life was leaving my kids when they were young. My youngest is 12 and my aim is to get her to 16. I remain positive and will go to any lengths.

At moment am inoperable but hoping if mets in liver react to FOLFOX the consultant may consider a whipple as tumour in pancreas is in right area for them to consider this.

Remaining upbeat, with a beautiful wife and 4 perfect kids I have no real choice.

Good luck to you all, life's not fair but no one ever promised it would be.

[J_T]

Hi Peter, and welcome to the forum So sorry to hear of your diagnosis, no-one wants to be posting here! You'll get plenty of support and advice and there are the specialist nurses to, available to email or phone Mon-Fri.

Glad to hear you are feeling well and long may that be so.

There are a couple of threads on here about Nanoknife which you are probably aware of but they are well researched posts and a couple with from first hand knowledge.

Keep us up to date with your progress.

Julia x

[Dollysdaughter]

Hi Peter, welcome to this great group of supportive people. It has been a huge help to me in support of my mum. So sorry to hear of your diagnosis. You sound so positive though, which is fantastic. It is evident that lots of people defy the "statistics" and it sounds very much like you will be one of them.

Keep well,

Sara x

[Didge]

Hi Peter

Welcome to the 'club'. My bf is 48, is also being treated in London but at the xx, and also has 4 children (but is divorced). It gives him something to fight for, his one daughter is 12 too! His mother died of PC. Also says he is going nowhere and never felt really ill until he started the chemo! He is hospitalised yet again with another infection. Will be thinking of you in your journey and hope to get good news! But we are all here for the good and the bad times. It's just that we prefer the good ones!

[nikkis]

Hi Peter,

Welcome to the forum, I am very sorry to hear you have had this diagnosis. My husband, who is 50, was diagnosed last year. I am a nurse too, now working as a HV, and overall a bit of knowledge is definitely an advantage! Our children are 14 and 16, and Paul too finds the thought of not being there for them very hard, his goal is to see them off to university. Every day he is still here I am a tiny bit more hopeful.

Keep in touch,

Nikki

[Muzzy64]

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 my wife and kids early. One of the very few positives of my diagnosis is that fear has now left me. I'm not sure if this makes any sense but possibly someone may relate to it.

I have always been a person who wanted more. If I felt 7/10 I looked at ways of feeling 8/10, if I enjoyed 2 pints then 3 would be even better, if I liked 1 donut then I wanted the 2nd etc etc. Slightly obsessive, always looking for more ( emotionally rather than materially ). Today everything is enough. I've never felt that before. I'm acutely aware that this looks as if it's been copied and pasted from a self help manual but it's an honest appraisal of how I feel today.

[MSH]

Hello Peter,

I just wanted to wish you all the best with your treatment. You don't say why you're not on Folfirinox, but I'm sure the Folfox should be at least as effective as your father's Gemcitabine. I'm sure your right about positive thinking, which is one reason I was disappointed with the recent Coronation Street storyline, I shouldn't be as I don't even watch the programme, but I know these things help shape popular attitudes. In my quiet moments I sometimes try and visualise my immune system scouring my body for malignant cells.

Of course a diagnosis of pancreatic cancer is a huge blow, but it isn't completely negative. An awareness of our own mortality helps to keep a sense of perspective with regard to the important things in life mainly of course relationships. It also intensifies the pleasure from everyday happenings. Carpe Diem is an easy phrase to say but less so to live by.

Let us hope that we are sharing our thoughts on this disease next year.

Mark

[Cathy]

Hi Peter

Welcome to the forum and I am so sorry to hear of your diagnosis. Life really is unfair.

Great to hear that you feel so well though. My partner, when diagnosed, also had liver mets and mets on his peritoneum as well but looked and felt really well, no jaundice or weight loss. From the (limited) experience I have I would say this makes a huge difference. In the time after he was diagnosed we had 2 holidays abroad and countless weekends away. Your positive attitude will make a big difference, both for you and your family.

The nurses here are also amazing so you or your wife ought to use them whenever you feel you need to.

Keep on keeping on (as we say).

Lots of love

Cathy xx

[Muzzy64]

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 doing) the regime is similar to Folfirinox and statistically as effective so I'm just putting my trust in the medics.

I never want to know prognoses as I feel it would not benefit me or my state of mind. All I know is that I have an approx 2cms tumour in pancreas with 'a few' mets in liver. Also as I've said I'm fairly symptom free, no weight loss, no jaundice, no real appetite loss and last few days no pain in right upper abdo or shoulder. I'm hoping that this might be a sign the first round of chemo is having a beneficial effect. The scan in early July will show more.

I am having pain from PICC site though and under arm pit. No tracking of redness and temp only 37.2 so will wait for district nurse to come round tomorrow to redress and flush.

I have a length of time in mind to aim at and think that will help me psychologically.

[Muzzy64]

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).

[jay]

Wishing you all the best Peter. (My husband is 48 and we have a daughter whose

Take care x

[jay]

oops don't know how I got a smiley thing on, meant to say 8 !

[Cathy]

Hi

If you do a search on this site many of use (or our partners) have had this regime over the last year or so.. My partner included.

Please ask any questions you need to about side effects etc. We've all become "experts"...

Best wishes

Cathy xx