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

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Sandiemac
Posts: 54
Joined: Tue May 10, 2016 10:27 am

Stephen's Story

Postby Sandiemac » Mon May 23, 2016 4:23 pm

Hello Everyone
I have been reading this forum with much interest and thought I would join in on my husband's behalf.

Background: He is 71 years old and never had a day's illness (not even had flu) until we were faced with a possible PC diagnosis when a blood test came back showing jaundice and diabetes. We were totally unaware of the diabetes but, in retrospect, had sort of been aware of him going yellow. Within days of this he was in hospital for 3 weeks, where they put in a stent on the second attempt, stabilised the diabetes and got him on a self-injecting regime. By this time he had lost 2.1/2 stones.

He was discharged on the 11th March and we were given an appointment at a specialist cancer hospital in Oxford for 1st April with the instructions to feed him up and get him more healthy. He was very frail at this time but had never, and still hasn't, had any pain.

On April 1st we duly trotted along to this clinic, not knowing what to expect, and were shocked to be told he had a maximum 12 months to live, even with chemo! A second doctor then started talking about the possibility of what I now know to be the Whipple op and whipped him off for a scan. We came back about 10 days later to be told it was the usual inoperable story.

To short-cut the story, he has been accepted onto the SCALOP-2 trial. This is 3 cycles using capecitabane and nelfnavir (apparently used for AIDS patients in the USA). He has his first session on Friday on a 3 Fridays on, 1 off, rolling cycle. This is followed by another scan to see what effect it has had.

In the meantime we are carrying on as normal. He is continuing to gain weight (he is not on creon) and unless we stop to think about it you would never know he is ill. He has had 2 CT scans so far and they showed no change between the two, despite them being 5 weeks apart.

The information I have found, particularly from Dr Mark and slewis (post edited by Nurse Rachel), has been extremely useful and given me lots of tips of what to ask about, and for.

I'll be back(!) to let you know how he is getting on in case anyone else is also on this trial. It would be great to compare notes.

Best wishes to everyone on this long trek! Sandra

sandraW
Posts: 990
Joined: Thu Oct 31, 2013 5:38 pm

Re: Stephen's Story

Postby sandraW » Mon May 23, 2016 5:11 pm

Hi Sandra, from another Sandra, welcome to the forum the place where no one wants to be, but where you will get lots of help and support.
I am sorry you have had this terrible diagnosis, if you speak to the nurses on here they will advise that your husband does take creon, I never knew if my husband needed it or not, he hated tablets but took it faithfully with every meal, not so good with his snack though.
I hope you husband does well on the trial,and that he continues to gain weight and be pain free, please do keep us up to date on his progress, take care sandrax

boa
Posts: 128
Joined: Thu Jul 09, 2015 12:13 pm

Re: Stephen's Story

Postby boa » Mon May 23, 2016 6:26 pm

Hello, thanks for sharing your story. Please let us know how you get on. It's very supportive here. Catherine

Wife&Mum
Posts: 360
Joined: Thu Dec 03, 2015 3:12 pm

Re: Stephen's Story

Postby Wife&Mum » Mon May 23, 2016 6:45 pm

Welcome to the Forum Sandra, but I'm very sorry that you have reason to be here.

Good, though, that your husband has managed to get on a trial - he will be closely monitored and looked after. I assume that one of the reasons he's been accepted onto Scalop 2 is because his disease is locally advanced? If that's the case I'm surprised that a figure of only 12 months max was mentioned. Many people with locally advanced disease live for considerably longer these days.

I wish you and your husband much good news going forward.

W&M xx

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Stephen's Story

Postby Proud Wife » Tue May 24, 2016 6:06 pm

Hello Sandra, Welcome. Really pleased you have decided to join in on your husband's behalf.

Looking forward to hearing how he gets on. Best of luck with the trial.

PW xx

Sandiemac
Posts: 54
Joined: Tue May 10, 2016 10:27 am

Re: Stephen's Story

Postby Sandiemac » Sun May 29, 2016 11:34 am

Thank you all so much for your replies. I really appreciate them.

After hearing and reading so many horror stories about side effects we have been pleasantly surprised, although of course he has only had one session. He has had gem and cap (the ex-AIDS drug comes further down the line apparently - given conflicting information) and sent home with anti-sickness pills and immodium look-alikes just in case. Everything has been totally normal.
Yesterday was our 44th wedding anniversary and we went out for a meal and then to the local casino and had a thoroughly good evening.

We were told that any side effects would manifest themselves quite soon but that no new ones would then happen so it's been a very encouraging start.

boa
Posts: 128
Joined: Thu Jul 09, 2015 12:13 pm

Re: Stephen's Story

Postby boa » Sun May 29, 2016 5:40 pm

Good news that Stephen is feeling good and that you enjoyed your evening out. Catherine

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Stephen's Story

Postby Proud Wife » Mon May 30, 2016 12:18 pm

Congratulations to you both Sandiemac on your 44th wedding anniversary!

Delighted to hear that chemo went well, please keep us posted on Stephen's progress.

Nice to have you chatting on here with us!

PW xx

Sandiemac
Posts: 54
Joined: Tue May 10, 2016 10:27 am

Re: Stephen's Story

Postby Sandiemac » Tue Jun 07, 2016 3:01 pm

I seem to have spoken too soon in terms of side-effects. Following the first session (a Friday) Steve started uncontrollable itching on the Tuesday night and had a miserable night, with none of our range of creams and moisturisers having any effect. He has suffered from itching for some years and we assumed it was the slow onset of the jaundice/cancer which caused it. Our GP prescribed some strong anti-histamines and a steroid cream to be applied sparingly later in the week and these helped.

Having this experience we are now tailoring what we expect to be the second itching onset today by starting the anti-histamines in the daytime and having the cream as a standby for the night. Our designated trial nurse arranged for him to see a doctor before the chemo session last Friday and he estimated him at a level 2 for affliction, despite it covering about 75% of his body.

We had another blip this weekend when his legs refused to work, turning his legs to spaghetti is the best way I can describe it, and he spent most of Sunday in bed. We were supposed to have gone to a family function but there was no way he could have got down the stairs. I rang triage and they said it was outside their expertise and recommended I ring 999! Stephen was having none of that and on Monday he was much better and able to get up and get, slowly, downstairs although again he was very tired and had long naps during the day. His legs have small blue marks on them like a rash but it is under the skin. Has anyone experienced this?

His appetite has gone AWOL and as he is diabetic this is a bit of a problem but we have an appointment with the dietitian at the local hospital tomorrow so I am sure they can suggest something.

I am learning that it is one day at a time.

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Stephen's Story

Postby Proud Wife » Tue Jun 07, 2016 9:44 pm

My hubby had exactly the same with his legs out of the Blue.couldnt get him down the stairs, called 999.

Legs improved To a certain extent but he needed a stick to get around. Since he's been in hospital, ability to walk just about gone. No blue marks though but certainly lack of appetite..

To this day we've not had any answer as to what caused this and I don't think we ever will.

My advise is to get those legs checked out xx

PCUK Nurse Rachel
Posts: 53
Joined: Wed Jan 14, 2015 4:25 pm

Re: Stephen's Story

Postby PCUK Nurse Rachel » Wed Jun 08, 2016 1:07 pm

Dear Sandiemac,

I am sorry to hear that Steve has been experiencing more side effects from his treatment. I’m glad however, that the Research Nurse managed to get Steve reviewed by the Oncologist prior to his treatment on Friday. I also hope this his itchiness is subsiding a little?

Sandimac will already be aware of this,(so this is really for the benefit of the other forum family members) but when participating in a clinical trial, it is vital that all side effects are reported to the trials team. This is so that they can monitor each patient closely, for expected and unexpected side effects of the trial drug, but also of the combination of the drugs being used. So, as above, it’s reassuring that Steve was able to be seen last Friday.

Sandiemac, I hope you don’t mind but I will email you privately in relation to some of the issues that you have raised here and the rest of this post is directed generally to the other forum users.

There are specific guidelines in relation to reporting side effects, this is so that patient safely is maintained for all patients taking part in a trial. Your Research Nurse, in this situation is effectively your ‘key worker’ and your gateway to assessments, as they will know what side effects to expect with the trial drug and work very closely with the treating Consultant.

Having worked as a Clinical Research Nurse previously, I can safely say when a person takes part in a trial, they will probably develop a very close relationship with their Research Nurse and please do not be afraid to get in contact with them, as unfortunately like Sandiemac may well be experiencing, they will become a great source of support.

Best wishes,

Rachel
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Sandiemac
Posts: 54
Joined: Tue May 10, 2016 10:27 am

Re: Stephen's Story

Postby Sandiemac » Wed Jun 08, 2016 2:01 pm

Rachel and I have exchanged emails and it was very helpful.

Our clinical trial nurse arranged for Steve to be seen by the doctor running the trial and his registrar this morning and they decided to make this week his rest week, rather than have the 3rd
dose of the 1st cycle, and perhaps reduce the dosage for his next visit as they think the present dosage may be too high for him to cope with.

The mottling on his legs has lessened today, he has eaten a reasonable lunch and this afternoon we see the dietician at the local hospital. The itching is MUCH less than first time around so that helps enormously.

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Stephen's Story

Postby Proud Wife » Wed Jun 08, 2016 8:45 pm

Good to hear it. Hope Steve enjoys his rest week xx

Sandiemac
Posts: 54
Joined: Tue May 10, 2016 10:27 am

Re: Stephen's Story

Postby Sandiemac » Sat Jun 25, 2016 5:06 pm

Just a quick update....the reduced dose (Abraxane & Gemcitabane) seems to be doing the trick. No more extreme reactions, just fatigue and loss of appetite which are liveable with. He had dose 2
of the 2nd cycle yesterday and seems quite happy to carry on with a third cycle in due course. We
will then, of course, have another CT scan and see where we are then. One good bit of news, and I
do know not to read too much into it, is that the CA19-9 is steadily decreasing (435 to 296 to 170).

PCUK Nurse Jeni
Posts: 955
Joined: Mon Jun 14, 2010 12:30 pm

Re: Stephen's Story

Postby PCUK Nurse Jeni » Mon Jun 27, 2016 10:31 am

This is brilliant news Sandimac!

Long may it continue!

Jeni.