Roger's Story

[kittycat]

Well, I knew absolutely nothing about PC until a couple of weeks ago when my darling Roger was taken ill on holiday with jaundice. He's diabetic and had been losing weight over the last year, but our medical professionals at home seemed to be in denial and did nothing, but he was diagnosed with inoperable PC only 2 days after being admitted to hospital, which was a complete bolt out of the blue!!! He quickly had a stent fitted to drain away the bile and we were able to return home after a week - we've never wanted to get home from holiday as fast in our lives! Once back, he was still very weak but Oncologist and Endoscopy appointments were soon in place and a course of Filforinox? prescribed which he will start in the next couple of weeks.

Tomorrow he goes for his pre chemo session, next week is the Oncologist and the fitting of a PICC line (which he is very anxious about) and hopefully chemo soon after. He is feeling a little better at the moment, but gets tired so easily so life is not too good right now, but he is optimistic and I am keeping him informed of various things on this site, although he doesn't want to know too much.

He's just started on Creon which hopefully will stop the weight loss (he's down to 7st), but he does have a good appetite so fingers crossed that the weight will creep back up prior to the treatment.

I feel that this is going to be a long, tough road, but do find the support on here really helpful and the Specialist Nurses and pretty wonderful, as it's such a lonely road to be on.

I will update regularly and hope that things get better soon.

Sue

[MSH]

Reminds me of my own story two years ago. Good luck with the Folfirinox, it can be very effective.

I don't think he needs to worry about the PICC line, I've had two central lines fitted and it's entirely painless, also they save a lot of needle probing during chemo.

[sandraW]

Hi Sue,

Ours was a similar story re the diagnosis, Gp's just don't seem to think of PC, but glad you are now on the journey, at least you have the chance to fight back.

As Mark says tell Roger not to worry about the PICC line, its probably classed as uncomfortable,but like Mark Trevor has had two fitted, and managed well, they said he had skin like a Rhinoceros, but he was still ok, and its very necessary for a drug like Folfirinox.

The regime is a bit debilitating we found as T has his treatment on a Monday, the following Friday,he was tired, Saturday more tired, and then Sunday he just slept most of the day away, but by the Monday he was starting to feel better, and we could get out and about and do things in fact Trevor went into work for a day usually the second week, it just becomes a way of life.

Please do keep us updated,take care sandrax

[Didge]

Sue, my fella tolerated the folfirinox really well with minimal side effects. It was the more 'gentle' gemcitabine which he can't tolerate! So it is a very individual thing and no point worrying about something which might not give him problems! I do hope the folfirinox has a good effect which it often does. x

[Sueoliver]

Hi Sue,

My Mum has been fighting this disease since May last year. She had a PICC line fitted and said it was fine! The unknown is always a little scary! The creons should help with his weight.

Good luck with the chemo and don't forget to ask as many questions as you can! My Mum tolerated Folfirinox well!

Take care,

Love Sue x

[kittycat]

Thank you for all your support - I really have found so much information from you all that I really would be in the dark without it. It's difficult for friends and family because they just don't know what to say to you and that just seems to make you feel more isolated than ever.

We went for the pre chemo session yesterday and Roger took it well - he's accepted that this is what's going to happen and is optimistic about the future. The Creons seem to have increased his appetite and he'll be weighed on Thursday when we see the Oncologist again, prior to starting Chemo on the 20th, so fingers crossed there might be an increase.

On a plus point, Roger has had 2 good days, almost back to his old self and that was really good to see, so lets just hope for a few more!!!

Sue

[kittycat]

Well, he started his chemo on Monday and it was a dreadful day. We were there from 9.45 until after 7.00 and his treatment wasn't started until 1.45! By the time we came out he was absolutely exhausted and yesterday we were back for a CT scan. On a plus point his back pain has eased but there is lots of nausea and vomiting and so he isn't eating very much at all. We're back at the hospital this morning to have his pump removed and hopefully the nausea will subside soon. Apart from that he's not doing too badly - still positive which can only be good and I'm holding things together as best I can, but you all know what it's like only too well.

Sue

[Ant11]

Hi Sue

If the sickness is really bad ask at the hospital for the tablets EMEND, these are often given to those having "the fox" as we call it, and really help with this awful sick feeling. The chemo ward can normally help and suggest different things and never be afraid to either ask for help on the forum or speak to the support nurses who again will offer lots of information. Annette

[Slewis7313]

Hi Sue, good to see the chemo has started. Delays are unfortunately not unusual as there are a number of things that have to come together on treatment days, the most common being the Pharmacists being given the go-ahead from the Doctor's to manufacture the chemo. That said, 09:45 to 19:00 sounds extreme and will hopefully not be typical. I can confirm that Emend does the trick for me and I have a tablet on days 2 and 3 of the cycle. I had cycle 20 today and have found the side effects have eased with each cycle, though the first 4 or 5 were the hardest, with some sickness.

Good luck with the ongoing treatment and I hope 'The Fox' works as well for Roger as it has for many of us. Mine went Secondary to my Liver in April 2014, with 12 'spots' identified and a Tumour Marker of over 2000. The most recent scan shows some of the Liver spots are no longer visible or greatly reduced in size and my Marker is currently 625.

Steve

X

[kittycat]

it's been a bit difficult to post this week as there has been such terrible news for some and it really is heartbreaking when you read stories and the brave fight that others have gone through. It's been a bit of a roller coaster for us since chemo last week and Roger has been feeling pretty dreadful on some days, especially yesterday. He is still feeling very sick and has lost even more weight, which is of concern as he looks so frail. We saw the Oncologist on Thursday and the good news is that it hasn't grown since his last scan 6 weeks ago, and I think they are going to modify his chemo on the next session so hopefully he won't suffer quite so much. Life is pretty naff at the moment for him, but he's still optimistic and we're just trying to do the best we can, but, boy, is it hard!

Sue

[Sueoliver]

Hi Sue,

You are right it is so hard! At least the chemo is doing its job and let's hope it continues to do so. You sound like you are a great support and it's all we can do! It is hard watching the person you love struggling with this awful disease and treatment but we are all here for you if you need us.

Take care of yourself as well.

Love Sue x

[kittycat]

Hi Sue, thank you for your kind words. Yes, it is so difficult and so hard to cope. I write this with tears in my eyes as Roger is having his daily nap - life is pretty awful for him at the moment. He has his next chemo on Thursday and I just hope that they will be able to adjust it so that he doesn't suffer so much with all the side effects and have some sort of quality of life.

Sue

x

[belgrade]

Hello Sue,

There's nothing worse than watching your loved one struggle with this awful disease and knowing you can do nothing to stop it. I hope the effects of Roger's chemo will ease and his quality of life will improve.

Take care,

Hilary

[kittycat]

Well, Roger had his second round of chemo on Thursday and the dose was reduced by 10% and I can honestly say that he has tolerated this so much better. He was tired yesterday afternoon, but not as bad as before, and he has had virtually no sickness and that has made him feel better. His appetite is still good so hopefully he will maintain (or maybe even put on a few pounds) before his next round as he is painfully thin. Earlier this week, just before his chemo, he was just like his old self, the one I've lived and loved with for so many years, and it was wonderful - he was optimistic, happy and full of life and it was so good to see him well and not in pain as he has been for the past months, I just hope it can continue.

Prior to diagnosis Roger had an MRI scan on his prostate and he has now been called back to Urology which is a bit of a blow. Surely there can't be anything more in store for him at this time, and despite phone calls to Urology and Oncology, they are insistent that he has to attend the appointment and all they will say is that it is to discuss the results of the scan which was done in early March. I'm hoping that because he hasn't been called back before that it's nothing to worry about, but if there's been any luck for us in the last few months, it's been back luck, so I'll just be glad when we've been.

I must admit that I've gained so much information on the website and received such kind words that it has helped me to know that we're not the only ones going through this and Dianne has provided me with really useful information about Creons and anti sickness drugs which are really helping.

I've also been in touch with the Professor regarding the Nanoknife to see if this might be a suitable option, and hopefully his latest scan has been passed on and we are now waiting to hear if this might be the case, so fingers crossed there too.

Sue

[jay]

Good news Rodger tolerated the second lot of chemo. Its just awful watching our loved ones poorly. The site is amazing, my friends hadn't really heard of pc and they just didn't know what to say. Loads of luck with the proff and urology.

Try to live in the moment , and enjoy every second, every smile, every look, something I was unable to do with my husband but Ive learnt too with my Dad.

Sending you a massive hug, take care of yourself too.

love Jayne

x

[Go green sue]

Hi Sue, Fortunately my

tumour was caught in the pre malignant stage and I have been quite well since my distal pancreatectomy 8 months ago. I had a scare last month when they thought a new tumour had grown when I had my follow up MR I scan but they decided it was a split duct but the thought does niggle in my mind.

I am no stranger to PC though as I nursed my mum with it 20 years ago. There was no chemo or rad offered then and it was inoperable so she was fortunate to live 2 years.

It is such a debilitating wicked disease but try and live for the moment and have faith in the treatment even though life feels a struggle at times.

I am waiting for a phone call from my daughter at the moment as my lovely 11 year granddaughter has just been admitted to hospital with suspected pneumonia. I couldn't go on my last holiday in October as I had an abscess following my pancreatic surgery so we rebooked and should be going on a cruise tomorrow- armed with creon ha ha- but I don't know if we wi make it now with Jessica being so poorly. Isn't life cruel sometimes ?

I wish roger all the best with his treatment and I'm sending you hugs.

Sue xx

[Sueoliver]

Hi Sue you sound much more upbeat in your last post! I am glad Roger tolerated the chemo better. My Mum had hers reduced by 20% each time! It does seem to make a difference!

Let's hope he continues to do well.

Stay strong,

Love Sue x

[kittycat]

Well, I haven't posted for a few weeks but I have been reading all the posts and what a lot of sadness there is. No matter how optimistic I try to be the disbelief of what has happened and how things can only get worse just take over me at times and I just cry for nothing.

Roger has had a few ups and downs - 2 stays in hospital, one with constipation and dehydration which was sorted in a couple of days and one with water works problems which was rectified over night but it meant that his chemo was delayed for a week so that he could build himself up a bit. He's been feeling much better and because of this we were able to see Prof **** in London regarding Nanoknife and have booked in for the 1st July which has really raised Roger's spirits. Unfortunately he then developed a chest infection which meant another delay to his chemo but on the plus side this has meant that he has felt really well and able to enjoy life a little more although he hasn't put on any weight despite his good appetite. He has chemo this coming Monday and hopefully a fortnight after before going to London for the Nanoknife and I just hope he will be strong enough for the journey as he has really suffered when he had the last two sessions. Hopefully we will be able to handle the nausea and sickness better this time but you just don't know do you.

His back pain has increased and he is now taking morphine tablets and liquid morphine to control it and being comparatively pain free has increased his well being too.

I do feel for everyone out there going through thi, you just don't realise how many people this dreadful disease affects and we can only hope that they find a solution soon.

Take care everyone.

Sue

[MBN]

My Mum was diagnosed on Friday with PC and it has been really helpful to read these posts. I've learnt about stents draining away the bile, the use of creon and also about the type of chemo. My Mum is 86 and the tumour is supposed to be large. She is jaundiced and the only mention of anything yet is the putting in of a stent. We have not heard from an oncologist yet. She mostly just wants to sleep now.

[sandraW]

Hi MBN

welcome to the forum where no one really wants to be, but where yu will get lots of advice and support. Sorry to hear of your Mum's diagnosis, my husband had jaundice and it made him very tired too.

Why don't you start your ow thread, then we can look out for your posts, and offer more support, hope you hear from the oncologist soon, take care sandrax

[sandraW]

Hi Sue,

I have not been on the site for a while, so just been catching up on your posts, sorry to hear of Roger's diagnosis, hope he is feeling ok after his chemo yesterday, and that he improves soon, take care sandrax

[kittycat]

Well, Roger definitely coped better with this cycle of chemo but as we enter the second week the sickness is back although not as bad, but also with diarrhea as well. It seems like I'm forever giving him tablets and he's asking when is he going to feel better. This is an awful disease. When I'm with him I can be strong but there are some really dark moments when I'm on my own. I know i'my not alone in this butI just hate seeing him suffer so and he's so thin even though he's eatig well and taking creons. I just tomorrow will be better for him.

Sue

[Sueoliver]

Hi Sue this is an awful cancer but you are doing a wonderful job! We all have dark moments but we seem to get through them and posting on here helps.

I'm glad Roger coped better this time with chemo lets hope he starts to feel better. Look after yourself as well and stay strong.

Love Sue x

[kittycat]

Unfortunately Roger was admitted to hospital yesterday following diarrhea and vomiting - we only went for a routine Oncologist appointment but she could see that he wasn't well and is arranging for a CT scan and blood tests in order to find out the cause. It could either be the tumour that is progressing or the chemo causing these dreadful effects. His CA19-9 has gone up from about 3300 to 3900 and from diagnoses in March he has felt pretty awful. His best few weeks were when he had to have a break from chemo and he started to feel better then. I can only hope that things are going to get better soon - I keep hoping and hoping but it hasn't happened yet. If I had to look for plus points in all this, Roger is getting good care and they are trying to sort him out pretty quickly. This does however put the Nanoknife on hold as it was planned for the 1st July and Roger should be having chemo that week, whether it be Folfironox or something different, but hopefully we will be able to get Nanoknife rearranged quite soon.

Hopefully I'll have better news when I visit him today, or at least some answers because he can't go on like this.

Sue

[kittycat]

it's been an absolutely dreadful week this week. Roger was discharged from hospital on Monday but still has really bad constipation and I can't speak to the GP until tomorrow as he doesn't work on a Wednesday. We see the Oncologist again tomorrow but she is questioning Roger's quality of life as a result of the severe side effects he has suffered on Filforonox. His tumour has grown but not enough to say that the chemo is working and he could have another 3 cycles before having another scan. The alternative is to have a different chemo which is less effective but hopefully kinder on the side effects. To make matters worse we had the District Nurse today and she is talking about special mattresses and rings for his seats and maybe a chair for the shower. He doesn't need any of these - it's far too soon, but then she asked where the hospital bed would go when the time comes. I don't know how I'm holding it together at the moment and tomorrow we have to make this difficult decision with the Oncologist. I try to keep optimistic but it just seems to get worse and Roger just wants to feel better than he does now. Don't know what will happen next but surely it must get better soon.

Sue