A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Stephen's Story

Postby sandraW » Thu Dec 15, 2016 2:28 pm

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


Re: Stephen's Story

Postby Marmalade » Thu Dec 15, 2016 9:36 pm

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

Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Stephen's Story

Postby Veema » Thu Dec 15, 2016 10:21 pm

So pleased for you...great news!


PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: Stephen's Story

Postby PCUK Nurse Jeni » Fri Dec 16, 2016 11:57 am

Wonderful Christmas present Sandra!

As Marmalade said, enjoy!

Specialist Nurse.

Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Stephen's Story

Postby Ruthus » Fri Dec 16, 2016 2:14 pm

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

Posts: 475
Joined: Sun Sep 04, 2016 10:38 pm

Re: Stephen's Story

Postby Justamo » Fri Dec 16, 2016 2:37 pm

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.

Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Stephen's Story

Postby Elaine123 » Sat Jan 07, 2017 6:46 pm

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.


Re: Stephen's Story

Postby Marmalade » Sun Jan 15, 2017 9:26 am

It is such a boost when one of us gets good news and I know the professionals love to be proved wrong.

Posts: 69
Joined: Tue May 10, 2016 11:27 am

Re: Stephen's Story

Postby Sandiemac » Thu Feb 02, 2017 3:42 pm

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.

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Stephen's Story

Postby Proud Wife » Thu Feb 02, 2017 4:19 pm

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.

Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Stephen's Story

Postby sandraW » Thu Feb 02, 2017 6:08 pm

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


Re: Stephen's Story

Postby Marmalade » Thu Feb 02, 2017 7:16 pm

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


Re: Stephen's Story

Postby Marmalade » Thu Feb 02, 2017 7:20 pm

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

Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Stephen's Story

Postby Wife&Mum » Thu Feb 02, 2017 11:05 pm

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

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Stephen's Story

Postby Proud Wife » Thu Feb 02, 2017 11:48 pm

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