Stephen's Story

[Guest]

Wonderful news! So pleased to hear this.

M xx

[Ruthus]

Hi Sandimac

I haven't posted on your thread before and have just read it from start to finish. I thought I would spend an hour this morning reading others threads and offering support if I can.

It sounds like you are doing a marvelous job as carer for your husband. It must be so difficult when your children don't live close by. I totally understand your view point on chemotherapy versus quality of life. It is such a difficult decision to make. With the recent scan results and good news it may make the decision easier. I'm really pleased to hear there is no spread and obvious response to treatment.

Having read so much information and many people's personal accounts of treatment it really is an unknown and everyone is different. Let's hope that the adjustments which have been made to your husbands treatment mean he is has a treatment which suits him and isn't impacting on his functioning and quality of life too much.

Daily radio chemotherapy was a treatment which had been suggested for myself but this didn't happen as I had surgery. I really didn't like the sound of having to travel to the hospital for treatment each day. I hate having to go to the hospital for reviews and treatment once a week so the thought of this happening each day was horrid.

I started Gemcap last Friday and although it is early days so far I am functioning well and feeling pretty well on this regime. I was very worried about starting this regime as I had just had a 3 month chemo break, had my energy and appetite back and the last regime I had was Folfirinox. My thoughts were that I could not face having to have Folfirinox regime again as it got increasingly disabling as it went on. I had 9 cycles but the last 3 cycles left me feeling exhausted and in bed for 3 days after treatment. From reading others stories that actually isn't bad and it appears I tolerated it well, so I can totally understand why people get to the point of saying 'no more treatment'. It's not just the treatment but also the hospital visits and feeling that treatment and appointments are completely taking over your life.

I understand that at initial diagnosis family and friends respond by saying 'fight' and 'do everything possible'. That was my family and friends response and of course it's because they love and care for me. It's very difficult weighing up the quality of life versus treatment issue and you are right only the individual can make that choice.

My dad is 91 years old and he was diagnosed with a neuroendocrine pancreatic tumour about 5 years ago. I knew very little about this diagnosis at the time. They were given the option of treatment but my dad declined this and stated he wanted no treatment and just wanted to be left alone. He would have been in his late 80's at the time. I recall thinking at the time that he should maybe try treatment but now knowing what I know I think he absolutely made the right choice for him. I know neuroendocrine tumours are slower growing and less serious but at his age I think treatment and having to attend appointments would have killed him. He has managed to live a really good quality of life since diagnosis and you wouldn't actually know anything is wrong with him. He builds walls and go's out running his sheep dogs every day. He's amazing.

It has to be a personal choice and I certainly don't see saying no to treatment or stopping treatment as giving up. I hope your husband is feeling ok at the current time, with love

Ruth x

[Sandiemac]

Hello everyone

A further update....we duly had out little break (6 nights in Cromer) and felt so much better for it. Steve has now started the daily radiotherapy, together with the new chemo tablets and the ex-HIV drug nelfinavir as per the trial. Together with the indigestion tablets replacing omezaprole he is taking 18 tablets per day.

We have now done the trip to Oxford 4 times - 4 down, 24 to go! So far, so good. He doesn't seem to be experiencing any side effects and "feels fine" most of time, although he gets tired easily. He is eating and sleeping well. NO PAIN! Things could be a helluva lot worse.

I found Dandygirl's links to the survival stats a huge boost to morale. Thanks so much. Now I am looking forward to mid-February (a year since diagnosis) so he can move into the 28% bracket.

Although I haven't been posting I have been reading everyone else's and have been so moved by them. It can't be said too often - your stories are so life-affirming and supportive and god knows what we would do without one another. It's so wonderful to 'talk' to people who just get it.

[WifeampMum]

Hi Sandie

So pleased to hear that Steve is getting on well, long may it continue!

My hubby also had 28 doses of chemoradiotherapy and managed to cope very well throughout. He found it far easier than the earlier Folfirinox and as Steve is finding, the main side effect was tiredness. This did build up through the 5 weeks but even towards the end it was quite tolerable. We were fortunate too that the RT unit was extremely efficient and we used to be in and out in 20 mins. Before it started we wondered how we would cope with the hassle of 5 weeks of Monday-Friday hospital visits but once we were in the swing of it, it was fine.

As you say, it's so great to have this place where people get it.

W&M

xx

[Guest]

Absolutely wonderful to read your latest posts. Cheered me up no end. I am willing you both on along with the rest of the forum team.

Much love M

Xx

[Sandiemac]

Hello Ladies

It's been a terrible week.

Last Wednesday night/Thursday morning Stephen had terrible diarrhoea, vomiting and falling over.

We were due for radiotherapy at 11.45 so I rang and got it changed to late afternoon, and by that time he was feeling able to get up and go. Friday was OK.

I went out for a short time on Saturday afternoon, leaving him in bed, and came back to find him lying on the floor unable to get to the bed to drag himself up, having vomited and soiled himself.

By this time we had noticed that his urine was getting stronger. He spent much of Sunday in bed, with me sitting on the bed beside him reading the papers and chatting.

On Monday morning I rang our trial nurse before we were due to set off for RT and she arranged for us to see our doctor after his usual weekly blood test. The bloods showed that he was jaundiced (which of course we suspected). They assumed the stent had failed or was blocked. There was also the possibility of a urine infection. He was admitted on Monday evening and put on drips. Had a CT scan on Tuesday and yesterday we were told the cancer had spread to the liver. His platelet levels were such that they couldn't do anything about the stent. That is happening this afternoon.

Another doctor we have seen several times told Stephen that the family get-together we have planned

for 27th November should perhaps be treated as Christmas Day! Fortunately one of our sons turned up unexpectedly during visiting hours so a quiet time sitting in the day room with him whilst Steve napped was very helpful for me. I can't stop crying.

[PCUK Nurse Jeni]

Hello Sandie,

Sorry to hear about all the recent developments with Stephen.

It does sound like such a stressful time.

I hope that the stent is replaced this afternoon as planned - is there a plan for further chemo for Stephen?

Please do not hesitate to contact us should you need to.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Guest]

Dearest Sandie,

What a ghastly time you are both having. The fear is the worst thing, not knowing and not being able to control what is happening or if anything can be done about it. You mustn't get too down too early, the roller coaster is at work and if the stent is done he will feel a bit better and some of his symptoms will be resolved. If he is not strong enough then drugs and other treatments can also help make him more comfortable.

As to the spread, that news has brought all the diagnosis worries back and it must feel like it did at the outset again. You cry my lovely if you want, its a horrible, horrible situation and a disease with a horrible prognosis. It's hard not be down hearted at times but you only have to read on here to know that you may still have more time than anyone predicts and that the time can be good. Try and focus on getting over this hump and Stephen more comfortable, it will make you feel better and then reassess your priorities if you want to. I think the doctor could have used different words but sometimes there are no words that would not hurt. Why not plan to enjoy every single day you have together irrespective of the number, planning for the worst and hoping for the best is one way of seeing it or just saying we are not going to put off anything we enjoy. Louis wanted a party at 10.30 on a Monday morning so we gathered up neighbours and friends, made party food and had one. Don't wait for a get together, just keep having them for as long as we are all around because none of us know what will befall us. Carpe Diem!

We will all be here thinking about you and willing Stephen better very soon, those of us who are inclined will also be praying that you both have the strength to weather the setback.

Much love, M xx

Edited October 27, 2016 by Anonymous

[sandraW]

Hi Sandie,

Just to let you know I am thinking of you and Stephen, and hoping as Marmalade says he is starting to feel a little better.

This horrible sneaky disease is insidious, its there in the background waiting to strike, just make the most of every day my love, and hopefully your will have lots more good days together, sending you love and strength, take care sandrax xx

[Guest]

Hi Sandie,

Just letting you know we are here and thinking of you both and hoping Stephen is more comfortable. PW can't connect just yet as she is moving house but sends her love too.

M xx

[Veema]

Oh, what a blow...I can totally understand the need to cry...it really does take you back to that fear we all felt at the initial diagnosis, not knowing what the future holds.

Hopefully he'll have his stent in now and the jaundice symptoms will start to get better and treatment can continue. Nige always said that the time he was jaundiced was the worst he ever felt throughout the whole disease.

Much love and a huge virtual hug.

Vx

[Sandiemac]

Thank you all for your words and hugs. It's so good to know you are there.

Well no truer word was spoken than calling this whole process a roller coaster. Every day we were told something different at the hospital and yesterday I was actually in the room when the ultrasound was done. This showed the stent was NOT blocked but of course it may have been a few

days earlier, or it may have been some infection which the doses of antibiotics have shifted. His

bilirubin is going down and his urine is lighter in colour.

He will be discussed at the MDT meeting on Monday morning and I expect to have something concrete in the afternoon from the doc, or else! They have even started backtracking on whether the liver is involved!

Whatever the result, at least I don't feel as bad as I did on Thursday. I am expecting the worst

and hoping for some good news.

[Justamo]

Make space on that roller coaster Sandiemac, we're on board with you.

Peter got as far as donning gown and stockings for the operating theatre when the op was cancelled. They have carried out so many 'procedures' without result, and every time we hold our breaths and expect some definite news - and then it all fizzles out. I think it would almost be easier to get bad news than no news - I know that sounds a bit silly, but you go through such torment every time. And then when the medics seem to contradict each other you simply don't know which way to turn. Peter's surgeon, Mr Bogeyman, did a complete about-turn at one stage and now I don't trust anything he says. The only sensible thing he has done so far is to refer us to an Oncologist. That's next Friday.

Peter struggled with jaundice too, and felt completely wretched. I'm glad Stephen's symptoms are lessening and that he's more comfortable. I'll be thinking of you on Monday afternoon and think you are wise to 'expect the worst but hope for the best'.

Kind thoughts,

Love Mo

[Dandygal76]

Hey lovely... if you are still in a fighting mood I will come on here as per my usual fighting spirit. Please do ignore everything I say if it is not what you require. From my limited experience of PC the greatest imminent risk does not always appear to be the cancer itself but to be from infection and you can have infection without high WBC and fever. I do believe that the doctors can put everything down to PC and roll out said lines of ... 'two weeks' 'it is the PC and nothing can be done' and in your case 'have Christmas early'. They could well be right and there is nothing that can be done but I have been on this bit of the roller coaster with a few people now who have come out the other side of this in spite of being told it is the end.

To be clear, I am not saying the doctors are wrong at all... I do not see what they are seeing but I have a 'go to' toolkit now and it is a fight to get them to remotely budge to anything not in their prescribed policy. If my dad is in this position I will put the onus on them to prove it is the PC and not an infection (as long as PC is not obviously so advanced). So, as to my toolkit...

1) broad spectrum antibiotics are a must and from the start (you may have to fight hospital protocols for this)

2) make sure they take a full blood count and not just LFT

3) they should also take cultures for both blood, bile and urine - 2 people I know now had infections identified by this but it had to be insisted on.

4) if you get a positive culture then they need to target the treatment (not just broad spectrum antibiotics, even if there are improvements).

Resist them withdrawing fluids until all of the above is secure and they are proven correct.

We need to start fighting back on perceptions around this illness and they need to prove it is definitely PC causing the problem rather than the symptom of increased infection being the problem.

I know it is a fine line on the guidance on here about giving medical advice but everything I have stated must go through a medical professional and so Stephen is properly protected. These are basic and non invasive checks that I believe should be part of the standard protocol of care for PC cases.

I hope Stephen is doing better. Just trust your instincts... if it doesn't feel like it is the the PC in your head then go with that. The most important thing is that you both feel comfortable with your decisions around this.. I know I am bore saying this again (and I will keep saying it throughout our time on here).... informed choices all the way.

xx

[Guest]

Hi Sandie,

Just dropping by to say hi and hope Stephen is still improving, you are able to relax a bit and that someone has been able to throw some light on what is going on.

Thinking of you often,

M xxx

[Sandiemac]

Hello everyone.

So....he is home! The consultant had a chat with us after the MDT meeting and the radiographer says there is a possibility the specks/marks on the liver could be abcesses due to the infection. However, his general condition was such that they would send him home with 2 more weeks of antibiotics, see Dr M in 2 weeks (and this has subsequently transpired to be at the local hospital so no trekking to Oxford) and then a scan 2 weeks after that when his innards should have calmed down after the 18 does of radiotherapy.

So for the first time for ages he is only on one set of tablets, and indigestion tablets as needed.

He is still lacking in energy but today feels better than yesterday and we plan to go out for a short time this afternoon. He is fretting he needs to get me a birthday card! We have a jaunt to London for a masonic lunch next Wednesday which he is very much looking forward to. Easiest journey possible - park by the station door - taxi to venue - taxi back to station - so fingers crossed.

I have stood down son in Portugal for now as he was fretting on whether to get on a plane. He and his family are due for a visit from the 24th so that's something to look forward to. The roller coaster is heading up!

[sandraW]

Hi Sandra,

That's great news that he is home and starting to feel better too.

Its good to have something to look forward to, like your lunch next week, and that journey sounds a breeze, should be really relaxing for you both.

Fingers crossed for good news on the liver specks too, take care and enjoy your time with your son when he arrives, love sandrax xx

[Guest]

Very pleased to hear Stephen is home and feeling better and hope that you are also feeling relieved enough to relax and enjoy a few days out.

Big loves M xx

[Sandiemac]

I've been quiet for a few weeks, despite lurking on the site on a daily basis keeping up with everyone's news, as there has been nothing to report. However, the CT scan duly took place and we had an appointment to see Dr M today for the results. Instead, he 'phoned to say no need to come in - he could tell us it had NOT progressed to the liver and the tumour had not changed in size. Another scan in 3 months! Another ride on the rollercoaster but this time up! Apart from telling us the tumour had decreased it couldn't be better news and we are of course delighted and relieved.

I very much hope this gives hope to other sufferers and that it is an indication that all he went through in the summer was worth it.

Every good wish to you all. Sandie x

[Dandygal76]

That is great news. Now you can have a lovely and relaxed proper Christmas. I am so pleased for you all. We are currently waiting on trial Dr to e.mail dad's yesterday scan results through at any time today. It is a painful wait. X

Edited December 15, 2016 by Dandygal76

[sandraW]

Hi Sandra, really great news, I hope you enjoyed your family get together in November and if you did make it Christmas, then you can have another one on the 25th. Take a moment to have a look at the view while you are on top of that rollercoaster, have a lovely Christmas and New Year love sandrax xx

[Guest]

Brilliant Sandra, fantastic news, enjoy, enjoy, enjoy xxx

[Veema]

So pleased for you...great news!

Vx

[PCUK Nurse Jeni]

Wonderful Christmas present Sandra!

As Marmalade said, enjoy!

Jeni,

Specialist Nurse.

[Ruthus]

Hi Sandie

Really pleased to hear this news. I know that relief you feel on this roller coaster when you just get that bit of good news. It gives a very much needed relief and some breathing space. Enjoy this moment and you can both look forward to Christmas now.

Ruth x