Just diagnosed

[Theresa Upton]

Hi everyone, I have just been diagnosed with metastatic pancreatic cancer. I am 58 years of age, have always enjoyed a healthy, active life style and until the beginning of August I was still climbing hills/mountains, enjoying holidays and just keeping busy. I started to feel very tired at the beginning of August went to the doctors and 'bang'.

I have been told that I cannot beat this one because the cancer is in my liver and an operation is not possible. I find it so hard to believe that nothing can actually be done although I do hope to start chemo on Thursday with a view to prolonging my life. I know that I am my own statistic but I would like to think that someone, somewhere can offer me more hope than I have now. I have been on steroids since Tuesday, I now have more energy, I am walking every day, my appetite has returned and I am generally more positive about my future.

Theresa

[KeithKerry]

Hi Theresa

My Daughter is in the same boat as you. She is just 35 years of age. She was diagnosed with stage IV in March this year. The primary tumour on her pancreas was about 3cm x 3cm. There were two small patches of the same cancer on her liver and several small nodules dotted around deeper in her liver.

She is now on a chemotherapy break of 3 months. Her liver is clear and the primary tumour has shrunk considerably (I have no idea how big it is now). Whatever cancer is left is now dormant and her tumour markers are normal.

We know that it will start growing again at some point in the future. The treatment wasn't stopped because it had ceased to work, but because there was no active cancer to treat. That means that the same chemotherapy can be used again once the tumour starts growing again. When that ceases to work there is a second line chemotherapy lined up that will hopefully push the cancer back again.

We are heartbroken, but 6 months ago we did not even know if she would be here and able to celebrate her 35th birthday. It may seem like scant consolation, but there is hope of extended life of a decent quality and you can find people that are alive 4 years or more after completing just chemotherapy.

Keep positive and determined. My Daughter did and I am convinced that it helped to push the cancer back.

[Theresa Upton]

Thank you so much for your response, stories like this are really positive and really give me hope. Love and best wishes to you and your daughter and I wish her all the luck in the world. My thoughts are with you.

Theresa

[kate2101]

Hi Theresa,

So sorry you to hear your news. Your story is a mirror of mine, I was diagnosed in June with spread to liver, multiple lesions, just 60, healthy, no weight loss, just vague symptoms and indigestion. It was like a bolt from the blue. My life fell apart.

Strange to say, life has now settled into a routine. I have number 7 chemo next Thursday (Folfirinox), should have been last week but my platelets were low so it was postponed for a week. I had CT scan results last Wednesday and everything has shrunk and my CA19-9 levels have fallen dramatically so the chemotherapy is doing it’s job for now. I’m feeling pretty good, I lost about a stone initially but I’ve put most of that back on again.

Try and stay positive. I refuse to accept I have only months left, I’m looking for years! Stay as fit as possible, eat well and listen to your body.

I don’t want to be in this position but it’s the way it is and I have to get on with it but I mean to fight all the way.

Stay positive and make the most of every day x

[Theresa Upton]

Thank you Kate for your response and believe me I am trying hard to stay positive and am doing everything I can to keep on top of the fight, like you I am looking for a few more years.

Theresa

[toodotty]

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 extremely limited, there are private options available but you will need to research and fight for everything. The statistics relate to all IV PC sufferers, half of which are over 75 with a series of complex medical issues.

First advice, keep fit and active (never mind "you need to take it easy …..") and listen to your body. Make sure that you have Creon to help with the digestion of food, also consider veggie/vegan as an option. Ensure that you get copies of all your scans onto disk, and all blood test results so if you end up in A&E you can evidence that you are not about to drop dead immediately but that blood test result abnormalities may be due to chemotherapy. (I have a complete medical summary ready to go and in my emergency bag if I need to go to hospital.)

Accept that life will be different, but keep positive and don't give up HOPE.

toodotty

[Theresa Upton]

Thank you toodotty. So far the attitude of the medics that I have met has been very negative, they do not appear to give a balance and I am afraid that at first I accepted what they said and gave up before I even started, however I now have the fight and am ready to push myself as far as I can go.

Theresa

[patrigib]

Just to add some positive news and to give you hope. my husband was diagnosed Sept 2014 stage 4 ( liver mets, only has had chemo and still here. The doctors gave him less than one year at diagnosis.

Pat

[Theresa Upton]

Oh Pat, thank you so much, your reply has really given me more hope, what a great site this is. I appreciate I have a long way to go but onwards and upwards.

Theresa

[Desso]

Very sorry about your diagnose Theresa, but as many already has posted there is hope. I am 53 and was diagnosed with PC stage IV in December 2016. My chemo treatment was very effective, and I was able to convince my medical team to perform surgery and remove the primary tumor after 9 cycles of folfirinox. Mets are still visible on CT scans, but I have been of treatment for 17 months now without any indications that the cancer has started to grow again. I personally think the first weeks after being diagnosed was the worst. After a while you just have to adapt to a new situation and do the best out of it. Life is not fair, and we have to play the hand we are given. For me it took some time to understand and accept that, when I did I found it easier. Now I try to enjoy every day and focus positive. Best wishes<3

Edited October 15, 2018 by Desso

[Theresa Upton]

Thank you Desso, it really isn't all doom and gloom is it, there really is hope out there.

Theresa

[kate2101]

It’s so good to read positive stories, makes such a difference. I agree with Desso, the first few weeks are the worst, somehow you learn to accept the situation and life returns to some sort of normality. Most of the time I feel ok and there are days when I can almost forget about ‘the beast within’. I’m not going to let it dominate my life, I have lots to do and I’m not going to give in. I’m not going to pretend I don’t get down, the black cloud is never very far away but it’s not difficult to find someone worse off than myself. I still have a good quality of life at the moment and can do almost everything I used to do before diagnosis, I give myself a good talking to when I’m feeling miserable and read positive stories ....thank you Desso and Patrigib!

[KeithKerry]

Desso wrote:

> Very sorry about your diagnose Theresa, but as many already has posted

> there is hope. I am 53 and was diagnosed with PC stage IV in December 2016.

> My chemo treatment was very effective, and I was able to convince my

> medical team to perform surgery and remove the primary tumor after 9 cycles

> of folfirinox. Mets are still visible on CT scans, but I have been of

> treatment for 17 months now without any indications that the cancer has

> started to grow again. I personally think the first weeks after being

> diagnosed was the worst. After a while you just have to adapt to a new

> situation and do the best out of it. Life is not fair, and we have to play

> the hand we are given. For me it took some time to understand and accept

> that, when I did I found it easier. Now I try to enjoy every day and focus

> positive. Best wishes<3

Thaat's very interesting Desso

Thank you for sharing your message of hope. Did you have your surgery in the UK?

[Alanc]

I have had a CT scan yesterday and am awaiting the results.

My symptoms have not been to severe as some on here, mainly loss of weight and pain the back, some changes to bowel movements etc.

I am slight encouraged by some of your stories cos I am of the opinion that PC is a hopeless case but comments of here suggest otherwise, I am at the point where I feel sure I have PC and just want to know how far it has gone.

Apologies if I sound irrational but am out of my mind with worry and think from comments it depends on how bad you are when diagnosed what the outlook might be.

I certainly know the meaning of fear right now which I am sure you all do.

[toodotty]

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 like PC. Do not be afraid to make a nuisance of yourself if necessary.

The chemo, whilst unpleasant will usually alleviate many of the symptoms, I have been living with PDAC Stage IV since March, about to have stage 9 of Folfirinox on Friday but for most of the time I am fit and healthy, I am even thinking of joining a gym now the weather is getting bad.

toodotty

[toodotty]

Theresa, what treatment are they offering you?

toodotty

[Alanc]

Hi Thanks for your reply, well done on doing so well fingers crossed it continues and you can still live an active life.

I have stomach pain today and during the night had quite bad bone type pain in my upper spine.

My back today is also uncomfortable.

I am just hoping that if I have pc they can do something to help.

I have only been having the symptoms for 4 weeks but could have it silently for a long time.

[Theresa Upton]

Hi, starting Folfirinox tomorrow, cant say I am looking forward to it but I am determined to give it my all. I have managed to get out for a short walk most days this week so keeping as fit as I can just wish my breathing would improve, something to do with my liver pushing on my diaphragm, it does get better the more I walk and as the day goes by.

Theresa

[KeithKerry]

Good luck Theresa. I really do hope that you're able to tolerate the chemotherapy and that it works as well for you as is it does for a good number of other people. Although my Daughter has been on Gemcitabine/Abraxane which is generally thought to be less tough on people, we are in touch with other patients that have been (and still are) receiving Folfirinox and many of them have seen good results.

I have my fingers crossed for you.

[kate2101]

Good luck today Theresa. I have number 7 today, I’ll be thinking of you x

[toodotty]

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 low fat and really simple.

The first 2 rounds of Fox is definitely the worse but better than I was expecting, and as Kate says once you get into a routine then it becomes less scary.

Best wishes,

toodotty

[Michaela1]

I third what Toodotty and Kate say, it gets better the more rounds you have, I've just had round 5 and am feeling ok with my usual symptoms. I think a lot of us keep a diary and that helps us track good and bad days so you can plan what you need to do and when, simple stuff like the shopping etc. Anyway good luck.

Michaela x

[Theresa Upton]

Hi and thank you. So far everything is ok, slept yesterday for what seemed to be forever but I did manage a decent walk yesterday before falling asleep and from lunch time today I have been feeling quite well. Had a decent walk and a good meal today with my son and daughter in law and managed a bit of baby shopping. Hope the rest of the week continues to be as good, tomorrow I get separated from my new friend the bottle.

Speak soon

Theresa x

[kate2101]

Hi Theresa

Glad all going well so far. Good you managed to get out and you’re eating. Got rid of my bottle last night, I’m always pleased to say goodbye to it!

You will probably find you will get more tired as the week goes on. My ‘dip’ is usually days 6/7 and you are at your most vulnerable as your platelets will be low. A week after my first treatment I felt awful, but we were in the middle of the very hot weather which didn’t help. Plenty of fluids and a bit of exercise help to flush the chemo. After the ‘dip’ I have a few days when I feel increasingly better and well ..... then the next round starts!

I’ve found each round has got easier for me and I can now predict when I’m going to be feeling my best. Even my ‘dip’ days aren’t too bad now, there are very few when I don’t feel like going out. Listen to your body and look after yourself x

[Theresa Upton]

Hi, the tiredness has really got to me today and I hope tomorrow will be a better day...……...slept really well during the night and for a lot of today.

My first round of chemo has been better than I thought it would be but it is most definitely has been hard and I hope I can find the strength to keep going, I have also found that I have cried a lot, making an appointment with the GP tomorrow, could have a bit of depression I suppose.

I hope everyone out there is dong as well as they can, take care of yourselves and positive thoughts to you all. x