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Stephen's Story


Sandiemac
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Sandie that is just great. I'm so pleased for you. This forum is amazing - people don't just share the bad things, they share the good things too, and it keeps us all going.


Thanks for the lift you have given to all of us, it's great news.

Love

Mo

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  • 4 weeks later...
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Hi Sandie I have just been reading you and Stephens story and I am so glad the roller coaster is at the top again. You have given me so much hope and reminded me that the professionals are not always correct. I hope you both had a fantastic Xmas.

Elaine

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  • 3 weeks later...

So here's more good news! We have just come back from the latest visit to the consultant following a CT scan 10 days ago. Stephen had a reoccurrence of the jaundice (knocked on the head with anti-biotics from the GP) which could have been caused with a problem with the stent so the scan was to see what is happening. The best news is IT HAS NOT SPREAD! but he was unable to see the size of the tumour because the area was hazy. Anyway, he is happy not to see us for another 3 months and there is no question of more chemo (not that Steve is strong enough to withstand it at the moment). The only fly in the ointment is the ca 19-9 was over 2000 up from 3/400 and we don't know why. However, Dr M now classifies him as "stable".

We are now going to plan a holiday in the sunshine.

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Hello Sandie


I have hummed and haa-ed whether to post or not because truly I don't want to deflate your bubble but I feel very strongly about the CA 19.9 markers from personal experience. If they show a constant decrease, that would indicate response to treatment. Not much change would suggest stable disease. If the markers are steadily rising, I believe on the balance of probabilities, that means progression. My hubby's markers were on the up, oncologist said he was stable yet he died a couple of months later because it was progressing. The whole point of this forum is to share our experiences but I'm scared of hurting or upsetting anyone with my posts. If anyone reading this thinks I should keep quiet, please tell me and I will delete immediately. xx


My advice if you want to know what's going on (and I see that Steve is not strong enough for more chemo so that's a hard one) is to speak to the oncologist and get bloods tested again say in a weeks time. If it's gone up again, then I think you know the answer.


I am so sorry if this causes you distress but I note you are thinking of planning a holiday in the sunshine. You run risks of going without insurance and that could be something you live to regret.

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PW I think what you have said is unfortunately very true, I know that not everyone is the same but CA19's on the rise do need checking and I too would want to know a bit more about what's happening before I went out of the country. sandrax xx

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One thing I learned on our journey was never to wait for the right moment.


If you both fancy a break and Stephen is well enough then go, relax and enjoy it.


M xx

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Sorry, I don't mean to disagree, I don't know enough to disagree, but Louis markers were never high and he still died. He wanted to go to Italy and we didn't make it because we were waiting for tests. I would never wait again, I would just pack a bag and go.


Having said that PW is very right about insurance…you'd need to check it out


Much love


M xxx

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I'm with you Marmalade...if the consultant gives his blessing I wouldn't delay that holiday in the sunshine. Hopefully it will do Stephen a lot of good and he will return more able to cope with whatever is around the corner.


My understanding is that UK clinicians tend not to treat a progression unless it is proven by a scan so there is probably time anyway to fit a holiday in. The oncologist should be able to advise.


W&M xx

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I think you might have started a great debate there W & M! I'm quite shocked to hear that. If there is a sign of progression....whatever that sign may be, then why not organise a CT scan to find out for sure? If there's any indication of progression then surely the oncologist has a duty of care to treat?


This has nothing to do with Stephen by the way Sandie, just a response to W&M comment.


With regard to the holiday, yes totally agree that PC shouldn't rule anyone's life more than it has to and if Stephen is well enough to go then That's really great, just think carefully that's all. We did and still went on a fair few trips!!


One things for sure, i bet you both really need that holiday.


Take care xx

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PW, I'll respond later today but I'll post my reply on my own thread as I don't want to hijack Sandie's. I hope it won't be a debate though but more a friendly chat where differences of opinion can be voiced without offence being taken.


Sandie, I hope this discussion hasn't upset you, that's never anyone's intention here. But it's the nature of PC that terribly difficult and contentious matters pop out of the box from time to time on this forum.


Love

W&M xx

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Of course! Shall we copy and paste our comments onto your thread and then delete? the last thing I want to do is hijack Sandie's thread and cause any upset. I think everyone knows that of me by now!! And rest assured, no offence will be taken xx

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PW you have not upset me in the slightest. You make a good point. However, he has just been 'scanned'. He also had a blood test yesterday and I have asked Dr M's secretary if she could find out if the 19-9 marker was taken yesterday too.


As far as a holiday is concerned - fear not, Stephen spent 50 years as an insurance broker and he wouldn't dream of travelling without insurance! And we wouldn't be thinking of going anywhere in the next couple of weeks as we have our son staying with us so I will be making enquiries before doing anything. A leap from 3/400 to 2000 is very worrying as far as I am concerned.


Finally, yes we both really need a holiday. It's been a long year (if you see what I mean!)

S xx

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PCUK Nurse Rachel C

Dear Sandimac,


That is great news that the latest CT scan has shown that Stephens tumour has not grown and is stable. Sometimes, when an infection has been present, this can make it slightly more difficult to accurately measure the tumour on a CT scan, due to this 'haze'. This 'haze' however, should settle down over time.


If the jump in Stephens Ca19-9 is a one off, than this is not necessarily something to be overly concerned about and as you are aware, its the overall trend that is important. Again, an infection could also possibly cause a rise in the Ca19-9 result, so if a Ca19-9 was taken yesterday, then it may be that in another couple of weeks, either the Oncologist (or the GP if easier) may want to recheck it?


That's also lovely that your Son will be staying with you over the next couple of weeks....enjoy!


Best wishes,


Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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Delighted Stephens tumour is stable and I bet you both cannot wait to go on holiday as the ols saying goes " make How are you while the sun shines " once Pete feels a bit better we will be off on a break.. Once again happy for you both stable sounds good.

Elaine

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I'm so pleased Sandie! I know how hard this all is. Rachel has confirmed what I thought and I just think it's better to be forewarned.


Enjoy your time with your son xxx

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  • 1 month later...

So....here we are on the roller coaster again. Our plans to go away were halted in their tracks by the news that Steve's brother had lung cancer and was being zapped with chemo and radiotherapy on a daily basis. So I didn't book anything whilst waiting to see how brother-in-law was doing and then Steve developed jaundice again, had a fall, and we were practically housebound. He hurt his leg and wrist, only able to hobble with assistance, had to get a commode in for him, anti-biotics he was taking doing SFA so got surgery and consultant mobilised (plus an extremely helpful conversation with Nurse Rachel which calmed me down).


The consultant said another scan was necessary and the quickest way to get one was to get him admitted, otherwise almost a 2 week wait. So he went into hospital on Wednesday, scan on Thursday, result on Friday - year-old stent looked almost blocked but had not shifted (see, you were right Nurse Rachel!). He is having an endoscopy on Monday when they will either unblock the stent or put a new one in. The latest scan "shows no progression" of the tumour (hurray!) but bilirubin is still climbing, of course.


No. 1 son has gone home but No.2 son is here most of the time so someone to share with. Things could be a lot worse!

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Hi Sandie,

I call my son's no 1 son and no 2 son too nothing to do with preference!! just age order of course.

Sorry to hear about the jaundice but everything else sounds really positive, sorry too, to hear about B.I.L and I hope he is doing well on his treatment.

What a blessing you had not gone off somewhere when Steve fell and then went yellow again, hopefully when this blip is sorted you can get a nice break somewhere.

Our nurses are wonderful and we are so lucky to have them, glad Rachel was able to calm you, its just the unknown that is so bloody scary.

I hope Steve is home again soon, and feeling much better, take care love sandrax xx

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PCUK Nurse Rachel C

Dear Sandimac,


I am so pleased that you got to the bottom of Stephan's jaundice and that it was a blocked stent. I am sure that this must have been a great relief.... Although still not nice for Stephen!


I wish Stephen all the best, and hope that everything went well yesterday!


Kindest regards,


Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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I know the jaundice is really unpleasant but knowing it is due to his stent being blocked is a relief , once that is sorted out his levels should start falling and hopefully it won't be too long until he is clear again. Nothing ever stands still in this horrid disease the new symptoms just keep happening one after the other. Hope Stephen feels better soon.

Elaine

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  • 2 weeks later...

Hi Sandie thank you for replying to my post ...I am just wondering how Stephen got on with trying to redo his stent on Wednesday , I hope everything went okay at the second attempt. I hope it all went to plan and he is on the mend soon. Wishing you both all the best.

Elaine

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Hi Elaine

Unfortunately the attempt on Wednesday failed too and he developed sepsis. A very frightening time as he started shivering strongly enough to shake the bed and talked nonsense to me. They put another drain in as a pro tem measure, which is working well. Unfortunately, because of that he was no longer urgent enough for another try with the stent on Monday coming and has been put back to Thursday (23rd). If that fails I think they will send him home with a permanent drain. They are pumping him with antibiotics and he has a feeding tube as he was refusing hospital food but has promised he will try harder now as he is getting so frail. I dread to think what he weighs now.

It's a blessing the hospital is only 10 minutes away (plus the time spent finding a parking space!) and I am spending every afternoon with him. I must admit it is all starting to get to me now.

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Dear Sandie,


Just wanted you to know that I am thinking of you both, It's so hard to witness these terrible things and know there is nothing you can do. We all understand how it feels, we know what we are dealing with but somehow in the melee it gets lost until there is a down turn and then its like diagnosis all over again. Don't bother about anything else for now just do what feels right, try and get rest when he does and don't be too hard on yourself, you are doing great.


There are always other things and people who seem to need our attention but they can all wait until the roller coaster starts climbing again. For now, just you concentrate on things that really matter, e.g. looking after yourself and Stephen.


Much love


Miriam

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Hi Sandie I am sorry to hear that Stephen is having so many difficulties at the moment. I can understand what you are going through when Pete had sepsis last month it was just a horrendous three weeks and he was not at all cooperative with following what he was told with regards to eating and drinking. You will definitely feel as though you are on the roller coaster as your whole life starts to revolve round hospital visits and worrying when you are not at the hospital. I think when procedures are rescheduled for a later date also adds pressure as you get yourself built up for it happening and then it is such a disappointment and adds further worry on you both. Please let us know how everything goes on Thursday and look after yourself I know it is tempting to not cook proper meals and survive on snacks after being at the hospital and you come home worried and tired and we tend to neglect ourself. Praying that Thursday is successful. Take care will be thinking of you both. Hugs

Elaine

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