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kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Roger's Story

Postby kittycat » Thu Apr 09, 2015 7:44 am

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
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Roger's Story

Postby MSH » Thu Apr 09, 2015 9:02 am

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
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Roger's Story

Postby sandraW » Thu Apr 09, 2015 12:09 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Roger's Story

Postby Didge » Thu Apr 09, 2015 10:49 pm

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
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Roger's Story

Postby Sueoliver » Fri Apr 10, 2015 11:10 pm

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
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Sat Apr 11, 2015 7:23 am

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
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Wed Apr 22, 2015 8:01 am

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
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: Roger's Story

Postby Ant11 » Wed Apr 22, 2015 10:07 am

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
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Roger's Story

Postby Slewis7313 » Wed Apr 22, 2015 5:03 pm

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
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Sat May 02, 2015 7:48 pm

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
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Roger's Story

Postby Sueoliver » Sun May 03, 2015 10:15 pm

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
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Mon May 04, 2015 2:18 pm

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
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Roger's Story

Postby belgrade » Mon May 04, 2015 4:15 pm

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
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Sat May 09, 2015 1:38 am

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
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Roger's Story

Postby jay » Sat May 09, 2015 9:11 am

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