Hi my story

[gra60]

Hi first of all i got some useful info from people about creon and would like to say thanks for that.

I started loosing weight around September 2014 and by the end of sept i went very yellow i mean homer Simpson contacted gp got a same day appointment and was in hospital by lunch time.

then things started to slow down a bit had a scan and was told i had a growth on my pancreas and it was pressing against the bile duct and would need stenting. this took over a week because the hospital only do this on Fridays, so was 2 weeks before it was done at same time a biopsy was taken.

was discharged middle of October and had follow up appointment with surgeon about 3 weeks later and was told i needed a whipples procedure but no mention of cancer at this stage although i kinda guessed it seemed no one wanted to say it so 15th December the day arrived and i was whippled all went ok. I think tho that the next few days were a bit rusheud off feeding tube 3rd day up walking very quickly kept being told i would be going home soon and was discharged 24th December.

At this time I had not seen an oncologist just the surgeon, things not going to bad apart from a lot of stomach pain but thats not so bad after playing around with creon.

Finally i am going to see Oncologist today.

So thats me so far no real dramas given the state of nhs and having read some of the sad stories i guess ive been lucky so far.

Graham.

[sandraW]

Hi Graham, welcome to the forum, I think its quite normal to see the surgeon to get the results from surgery about 6 weeks post op, and then be referred to an oncologist, it seems there is a 12 week window for adjuvant chemotherapy.

It does seem as though they push you into recovery, but I do think you do do much better at home, I still remember how terrified I was when my husband came home a week after his surgery to remove 2 thirds of his pancreas and his spleen, with just a bag of Creon and an appointment for his staples to be removed 10 days later.

Its good that all went well for you and that you are feeling reasonably well, its early days after all, I hope all goes well today and please let us know how you are doing, take care sandrax

[Guest]

Hi Graham,

Welcome to the forum. Pleased you have been reading and have gained help and advice. So pleased we could do that for you. If ever you need to ask anything, then please post, anything at all.

What did the oncologist say today?

Leila xx

[PCUK Nurse Jeni]

Welcome Graham.

Good to hear that you have gained some advice regarding the creon on here.

Hope the oncology appointment went well and should you need any information or support, please do email us on support@pancreaticcancer.org.uk

Kind regards,

Jeni, on behalf of the nurses.

[gra60]

hi

just been to oncologist had a scan 2 weeks ago and it showed small spots on liver and lung oncologist not sure yet what it is but are treating it as cancer got an ultrasound thursday and also start chemo as well if it is cancer been given about 1 year which was a shock just cant make up my mind if its worth having chemo for the sake of a couple months extra life.

sorry just needed to to drain down difficult talking to family

Graham.

[nikkis]

Hi Graham,

I am sorry to hear you are having to face this horrible disease. Their is no clear answer as to whether chemo is going to be worth it for you. Some people really struggle with it, whilst others breeze through, and I do think, from my husband's experience, and others I have read here it is tougher after surgery. No one can also say for certain how much more time it will give you.

My husband's attitude has been to throw whatever he can at it, to try and give us more time as a family, and although he is losing his battle now, this is a decision that neither of us regret. He had a small amount of the original tumour left after surgery, and they also believe it had spread to his lymph nodes in the area surrounding the pancreas and his lungs. He has survived a further 21 months following surgery, and although they have been tough months we have had some fantastic times too.

Of course, I Dont know anything about your family circumstances, but do try and talk to them if you can, as I am sure all the things that are worrying you are going through their heads as well.

Very best wishes,

Nikki

[J_T]

Hi Graham, welcome and sorry to hear of your diagnosis, good though you got a Whipple.

nikki has said it all really. Its a lot for you to take in and I wouldn't make any decisions in haste. As nikki said everyone reacts differently. For instance my husband was ill from the off and never really got well (he had his Homer moment too!), whereas friends I made on this forum, their partners were quite well throughout treatment and were able to work, go on holiday etc and have a good quality of life. That's the issue, if you are well and tolerate chemo well you may well get years of good quality.

There is a lady who used to post here and still does very occasionally whose husband never had a Whipple and had gemcap chemo and is still doing well, with a few niggles, four and half years after diagnosis, so just never know. (that was from a post she made last August so not that long ago)

Easy to say I know but try and keep positive.

Very best wishes

Julia x

[Guest]

Hi Graham.

So sorry to hear of your diagnosis. I think you are very brave to post on here. It can't be easy to write those words down.

I know it is none of my business what you choose to do, but I just want to say this: my Dad was diagnosed 11th February last year. 5cm tumour on his pancreas amd small spots on his liver. He weighed 8 stone 11. He was given 6 months. I was told that the oncologist was generous with his answer, to make me feel better. My Dad has just started his second lot of chemo. He weighs 10 stone 4. He does his own cooking and shopping. I get to do the cleaning! But seriously, my Dad is still here. I am so thankful that he is. Of course, I would respect his decision if he ever wanted to stop. What I'm saying is, 1 year isn't necessarily 1 year. The oncologists are only going on statistics. They cannot see inside your body and give you a date. Please take that into consideration. Please also read some stories on here, you will see just how amazing people are. Please don't give up.

Please still post here, we all would really like to help.

( i really wish they wouldn't give time scales, it can really affect someones mind and mental ability to fight)

Leila xx

[sandraW]

Hi Graham,

My husband had 2 thirds of his Pancreas (tail end) and spleen removed 11th September 2013, started 12 sessions of chemotherapy in November 2013, after 6 sessions they found tumours in his Liver, so for the last 6 sessions he had Folfirinox, he coped really well, and then he had a 4 month break, during which we had a 2 week holiday in Gran Canaria, a weekend in London with our grandson, a mid week break at Disneyland Paris with our granddaughters, and he spent 8 hour days working in the garden. Unfortunately the tumours started to grow again so he recommenced chemo in November last year and is still on treatment now. We still enjoy life, yes sometimes he is very tired, but we still get to do things together, and enjoy our time together. He is asking our oncologist wether we can go on holiday again, in the next couple of months, so we are at 17 and a half months after surgery, and still going strong, a little weaker, a little thinner, but still here.

As Leila says everyone is so very different, in the way we handle things, when we get bad news, we tend to go quite and lick our wounds, get our heads round it, and then the positivity comes back, as there is always someone in a worse position than us.

Obviously its your decision to make, and you will still be in shock, getting the news that the cancer might have returned, is overwhelming, so please remember that we are hear to listen. I know sometimes you men feel that you have to be the strong ones, but remember there are lots of organisations where you can get help, a listening ear, and the nurses on here are amazing too.

Sorry for the lecture, sending you a big cyber (hug) take care sandrax

[Didge]

Sorry to hear your news. Folfirinox can sometimes knock out small tumours for quite a while if you can tolerate it. My fella had very few side effects while he was on it. But if you do decide to say no to chemo there are a number of alternative things you can try - just google - if you want to. Might mean major lifestyle changes though and no guarantees. A very personal choice so take a little time to think about it. We are all here for the difficult stuff!

[MSH]

Hello Graham, what desperate bad news so soon after going through a Whipples. You must be feeling pretty much on the floor at the moment. In a way I can relate to your decision as I was in the same position two years ago. I was told I had a 33% chance of responding and if I did I could get eleven months. Did I want to go ahead with chemotherapy?

Obviously I made the right decision and today had my twentieth Folfirinox cycle. My quality of life is excellent I was skiing a month ago and plan a walking holiday in California in April. I have been fortunate in getting a good response to chemo, but you could do too. Being positive, the secondaries must be small or the operation wouldn't have gone ahead. Also I think your oncologist is on the pessimistic side. The prognosis of about a year follows the initial Folfirinox trial.

http://www.nejm.org/doi/full/10.1056/NEJMoa1011923

This though was for only twelve cycles which I had from April to October in 2013. The thing is if you respond once you're likely to respond to a second course of treatment extending the gains still further. No one is pushing Folfirinox as all the drugs are off patent but it remains the best hope for many people with this disease.

You aren't sure to get a good response, the side effects can be toxic and at the end of the day it's your decision. But I think you owe it to yourself to give it a try.

Edit: Having reread the trial I see that "The median number of treatment cycles administered was 10 (range, 1 to 47) in the FOLFIRINOX group and 6 (range, 1 to 26) in the gemcitabine group"

Mark

Edited February 24, 2015 by MSH

[J_T]

Great post Mark and glad to hear you are still responding well and enjoying life to the fullest. Long may it continue. Your walking holiday sounds fab!

Best wishes

Julia x

[PCUK Nurse Jeni]

Hi All,

Leila, Mark, Sandra, Didge - some brilliant replies there for Graham, and I just want to commend you all for the balanced approach you have shown here. It has highlighted the sheer tenacity of some of you, and your loved ones of course. To be honest, I felt quite "proud" after reading these replies (not that I can be proud, but you know what I mean!) - it shows the depth of knowledge and more than this, experience, which you all have, and as you have said, you are still here proving statistics wrong. And this is the best bit!

Just seeing written down some of the things you/your loved ones have done shows that you can still have some quality times in between it all. I know there are others on here who could comment as well about what they have achieved too. It is fantastic when pancreatic cancer gets put in its place from time to time! And I know its had its tough times for you all, but all I can say is that you are all such inspirations!

Keep fighting folks! Graham, that goes for you too!

Take care, and you know where we are if you need us!

Jeni, Nursing Team.

[Guest]

Just wanted to say how brilliant Mark's post is. It is so positive and so inspirational. Yet honest about the treatment. I really do think for the actual people with this disease to post, is truly amazing. Especially for new people, like Graham, to read.

Leila xx

[jay]

sorry to hear your news Graham so soon after your whipples.The same happened to my husband. Had a suspicious 4mm mass on liver but it never grew after op and was giving 6 months of germicibatane, sorry about spelling. On the chemo he put weight on, did the garden , decorated the computer room, went for 2 hr bike rides, had holiday in York, l we had a lot of good times. In July they decided it had definitely spread and he was going to start fox, he had a stent fitted and got an infection only 1 per cent of people get.

Loads of luck Graham, you are own statistic as you are an individual , hope that makes sense, my husbands consultant always said he never quoted stats because of that reason,

love Jayne

x

[jay]

sorry just read post back it doesn't make sense, didn't have thing on liver before op, spotted 8 weeks after op

x