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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Re: Stephen's Story

Postby Sandiemac » Fri Jul 15, 2016 10:44 pm

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.

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Re: Stephen's Story

Postby sandraW » Fri Jul 15, 2016 11:32 pm

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


Re: Stephen's Story

Postby Marmalade » Sat Jul 16, 2016 6:59 am

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
Last edited by Marmalade on Sat Jul 16, 2016 4:34 pm, edited 1 time in total.

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Re: Stephen's Story

Postby Dandygal76 » Sat Jul 16, 2016 1:52 pm

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

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Re: Stephen's Story

Postby Sandiemac » Thu Aug 04, 2016 2:19 pm

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.

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Re: Stephen's Story

Postby Dandygal76 » Thu Aug 04, 2016 7:17 pm

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
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Re: Stephen's Story

Postby Proud Wife » Fri Aug 05, 2016 12:37 pm

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

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Re: Stephen's Story

Postby Sandiemac » Wed Aug 17, 2016 6:17 pm

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.

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Re: Stephen's Story

Postby RLF » Wed Aug 17, 2016 6:48 pm

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!

PCUK Nurse Jeni
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Re: Stephen's Story

Postby PCUK Nurse Jeni » Mon Aug 22, 2016 1:05 pm

Brilliant News Sandie!

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

Kind regards,

PCUK Specialist Nurse.


Re: Stephen's Story

Postby Marmalade » Mon Aug 22, 2016 7:00 pm

Wonderful news! So pleased to hear this.

M xx

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Re: Stephen's Story

Postby Ruthus » Thu Aug 25, 2016 11:54 am

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

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Re: Stephen's Story

Postby Sandiemac » Mon Oct 03, 2016 4:07 pm

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.

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Re: Stephen's Story

Postby Wife&Mum » Mon Oct 03, 2016 5:36 pm

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.



Re: Stephen's Story

Postby Marmalade » Mon Oct 03, 2016 10:44 pm

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