Stephen's Story

[Sandiemac]

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]

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]

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

[WifeampMum]

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]

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]

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]

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

[Proud Wife]

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]

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]

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 C]

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]

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]

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

[Sandiemac]

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]

This is brilliant news Sandimac!

Long may it continue!

Jeni.

[Sandiemac]

I thought I would get back to this as I haven't posted for a while, although I come onto the site on a daily basis to see how everyone else is getting on.

Stephen had dose 3 of the 2nd cycle but it was getting more and more difficult to get him to eat anything and he was having naps or just sitting in his armchair. We have a routine of going to Oxford to see the doctor responsible for the trial on Wednesdays before the chemo on Fridays so this Wednesday we said we would have expected more energy etc. because of the preceding week "off" but that just hadn't happened. There was no difference - still no energy and appetite very poor. I was helping him to dress and waiting on him hand and foot, which I was only to happy to do if it made life easier for him. Naturally he had lost weight and the doctor emphasised he must eat as he was now losing muscle as well as fat.

The trial timetable is that after the 3rd cycle he would have another scan and then a few weeks later he would start the radiotherapy with chemo which is 5 weeks of Mon-Fri radiotherapy with chemo tablets morning and evening. He said in view of the reaction so far he doubted Stephen could cope with that regime. On top of this we have a 2 hour round trip to the hospital.

The doctor decided to cancel today's chemo (which would have been no.1 of the 3rd cycle) and gave him some Complan to have between meals. Since Wednesday he has been eating proper meals again and sleeping less. Life is much more bearable. It makes me wonder whether there is any point in continuing with the chemo as he is so much better without it and he has grave misgivings about coping with the second part of the trial. I realise that you can't possibly comment on this as it is obviously a very personal decision but I'm just at the point where it is getting harder to be cheerful all the time. I forgot to ask about the latest CA19-9 reading on Wednesday but the only

way to really know what's going on inside him is another CT scan. We have touched on "quality of life" issues and I really feel he would probably be better off without the chemo but I certainly don't want him to stop because of me. I feel he has to come to this decision himself.

I'm just waffling on - I don't expect you to take much notice. I know many of you find it cathartic just to chat on to others in the same boat. We have 2 sons (and 3 grandchildren) but neither of them live nearby (one lives in Portugal) so don't see them very often but of course they are always on the phone. I have tried to be as honest as possible with them and they are aware of all the medical stuff but I think they have also cottoned on to the quality of life aspect whereas at the start it was "you must do everything possible to stay alive. One bright point is that there is still no pain.

I feel better now that I have shared all this with you.

[sandraW]

Hi Sandra, Just thought I would reply, and I am taking notice,

It is such a difficult decision to make and you are right only Stephen can make it. I think we possibly feel its wrong to give up on the chemo because we are in someway giving up, when we feel we should be fighting on. My husband had 21 rounds of chemo and to be honest he stayed remarkably well, he got a break of 5 months when he was really really well, then it was back on the treatment but to no avail, he died 15 months ago. I don't know whether he would have died earlier without the treatment, probably, as his was a very aggressive form.of PC. He had had surgery too but lymph nodes were involved, and it came back in his liver. He just kept going, but as he was quite well it was easier, he was only really unwell for the last 6/7 weeks of his life as his liver failed.

Like you my 2 sons and their families were not near, so its hard, that's what the forum is for, we all understand exactly how you are feeling, and are there when you need to chat It is more difficult to talk on the phone, you just can't communicate things in the same way, and they obviously don't want to loose Stephen either.

I am sending you a cyber ((hug)) and its good, no great that there is no pain, take care sandrax xx

[Guest]

Dear Sandimac,

I am so sorry you are feeling a bit low. We haven't posted with each other yet but I read your post and wanted to show some support. The feelings of being alone with our thoughts affect us all whether we are physically close to our families or not so don't worry about voicing them.

Chemo was not really going to be an option for my husband so we have been in palliative care since diagnosis. We have also been very lucky to able to talk about different outcomes since he first started to be unwell as we had a pretty good guess what it was. I understand completely that you both wanted to give chemo and other therapies a shot because although we all know there is no cure for PC, some can extend and maintain a decent quality of life.

I have cared for my husband through heart attacks and strokes and understand the importance of battling on, trying to keep them fit, encouraging the exercise, managing the drugs and the side effects but more recently I have come to understand the importance of giving him my blessing to stop fighting if he wants to. He was far more worried about leaving me alone than giving up on himself. When you think about it, its truly awful that facing death bravely and squarely in the face should even be contemplated as "giving up".

I am not saying that everyone should accept the inevitable and ignore treatments which extend life! If a person wants to go on they should be given every possible treatment, support and care to help them do just that. Many on here have been or are on heroic journeys to do just that.

Yes, your husband will have to make his own decision but if you think for one moment he may only be carrying on because he is worried about what will happen to you, then find the strength to give him your blessing and reassure him you will find a way, even if you are not sure how!

I will be thinking about you both, you have both been through a great deal. In all of this, remember that things are often darkest before the dawn and the treatment may be much better than you fear and the outcome much more positive.

M x

Edited July 16, 2016 by Anonymous

[Dandygal76]

Hi Sandimac,

I am sorry to hear that Stephen is having a tough time with the chemo and trial routine, it can be such a helpless feeling. I agree with all the sentiments on here regarding Stephen should be supported in his own decision making but also, to express the other side of things, if Stephen does still want to fight and the trial does not work then there are other routes to explore and I know when people have struggled with chemo some have gone onto just Gemzar alone and had successes and this is not supposed to be as toxic. And there are other chemo routines as well if he is suitable. I am not saying this is the correct choice for you because I totally understand the quality of life and palliative care route and have the utmost respect for that choice. But some people do okay on other routines and if it is the side effects of chemo that is the problem and not the cancer side effects then it may be something Stephen wants to consider.

I hope that you have a good weekend and the extra week off will give Stephen time to recover and regroup because making all of these decisions (whichever way they go) is so much easier when they are feeling well and more able to cope in general.

Sending you lots of hugs. x

[Sandiemac]

I was having a wobble about 10 days ago and started quite a long post, turned to something else, and then lost it! I was quite annoyed until I realised the act of writing it all down had helped

and so it wasn't a waste of time after all.

Things are going on quite slowly. The doc. decided to stop the abraxane as he felt that was the cause of the extreme fatigue. Although Steve was up for most of the day he didn't have the energy

to do anything. Fortunately, the doc also gave him tablets (Omeprazole) for his indigestion and this has improved his food intake dramatically. No itching either.

We have the 3rd chemo session tomorrow of the 3rd cycle and he is booked in for a CT scan on Monday

so will find out just what good, if any, the chemo has done before we contemplate the next step. According to the trial protocol this would be a daily radiotherapy course for 5 weeks with chemo tablets morning and evening. I think he is prepared to try this but of course everything depends on what the scan shows.

He leaves the house for short periods but is not up to being on his feet for very long. He is reasonably happy in himself (still no pain, thank god) but I feel we are in limbo. He has done my tax return for me (he was always the "money" man and I have never filled one in in my life) so that was a weight off his mind as he was fretting how I would cope with that. Got a nice refund too! Fortunately he is a cricket fan so the test matches and 20/20 are keeping him amused!

I am full of admiration for all you people and the way in which you cope and send you all my very best wishes.

Sandie

[Dandygal76]

Hi Sandie

Just in case you did not realise the same as me, I lost a couple of posts for waffling on and it logging me out but I am unsure if this is what happened to you but anyway... if you get booted to the sign in page when you submit then carry on and sign in, then use the back button to get to where you were, press quick reply and hey presto... you post will still be there. You may already know this but I only found out by accident so it might help you.

Anyway, I hope that the scan on Monday will show it has all been worthwhile in spite of the difficulties Steve has had with it all and for what it is worth, with all the different stories I have read he may respond differently to the radiation and chemo tablets so I have everything crossed for him that it is successful and without the extreme fatigue. IT is much nicer when they are eating as well isn't it? I found it quite traumatic when my dad struggled with this. I think it goes to show that you have to just keep trying different things to cope with the side effects and hope that eventually you stumble on something that sorts it all out.

Sport really does help as well doesn't it.. we have had football and tennis and now cricket. It seems there are no longer any debates over what shall be on the tele... dad has won that one hands down.

Your comments are lovely about being in admiration but you should be proud of your strength as well. We cope because we have to and we are all in the same boat unfortunately.

I hope the chemo goes well tomorrow and that you have a nicer weekend as you can waiting for that scan. xxx

[Proud Wife]

Good luck for chemo today and of course the scan next week.

Agree with DG Sandie, you are doing AMAZINGLY well too!!

Lots of love xx

[Sandiemac]

We got the scan results today. Good news! The tumour may have shrunk a little (they are unsure how big it was to start with) and it hasn't spread anywhere else!

As this was his "rest" week the difference has been very noticeable in his energy levels. He has kept saying he feels fine.

He starts cycle 4 on Friday and we then have a 4 week gap before the radiotherapy starts so we plan to get away for a few days during that time. It will do us both good.

[RLF]

Good news on the markers! You shouldn't read too much into one reading but the trend is the important part and Stephen's is declining which is exactly what you'd want to see! So well done him, and well done you!

Rob

x

[PCUK Nurse Jeni]

Brilliant News Sandie!

I hope that you managed to find a nice holiday to look forward to.

Kind regards,

Jeni.

PCUK Specialist Nurse.