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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mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Carls story

Postby mogs » Mon Mar 31, 2014 8:53 pm

That is such good news and so uplifting to read. Much love to you both x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Carls story

Postby InfoForMum » Mon Apr 07, 2014 5:54 pm

Oh guys, that's amazing! Off the back of hearing about Mike I so needed to see something like this. Brilliant, Fab, Spectacular, Mahoosively Wonderful and all the other words like that I can't think of right now.

Hugs to you both and huge good luck for the future!

Sarah

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Wed Apr 23, 2014 11:12 pm

Hi every one, thanks again for all your kind words and well wishes, we appreciate every one of them!

Carl actually withstood chemo this time quite well, by that I mean he was only sick for one day which is a huge improvement, but sadly was still bed ridden with nausea and general wellbeing issues. He has bad deep tremors that he feels running through his whole body, I'm wondering if these are actually a side effect of the sickness driver so if he's as well as last time I think we'll try taking it off after day 3 instead of 6.

Last Thursday was the 3 month mark from starting the chemotherapy, so Carl had a CT scan to check out his liver/lungs etc for signs of any tumours. We went in Tuesday to see his oncologist to get the results. After waiting over an hour from our original appointment time (I don't know why they don't just tell you the Drs are running over an hour late and suggest going for a coffee or a walk and coming back in a bit) we went in to see the Dr. It was a lady we had seen when Carl was admitted into hospital after his first Folfirinox session not our normal oncologist. She was lovely though and although his CT scan had not had a radiologist report done (probably as it was taken just before good Friday and we went in the Tuesday after Easter Monday) she had looked at it with our normal Oncologist and they were both confident there were no signs of any other tumours. She also admitted she wasn't used to the effects of the ablation technique so was initally concerned that the tumour had actually got bigger but was confused why the density of the tissue had decreased. She then sugested that the ablation had destroyed more tissue than just the tumour (Dr Leen said that was his intention so that he got all the tumour and hopefully meaning it won't come back at that site) and that is why it appeared 5mm bigger which I then confirmed to her Dr Leen had told us he had done.

So overall she was very pleased, she showed us Carl's Ca19-9 values but none have been done since the last 6 weeks ago when it was 31. He had it done yesterday but we've not heard the results of that yet, but we all hope that it might go down further than the 31 it was previously. Back at the start of this thread I said that the oncologist said they might stop the chemo after 3 months if the ablation worked, but that wasn't the advice they gave us this time. The oncologist suggested Carl complete 9 sessions out of the normal 12 they give people. Why? I'm not entirely sure why 9, she kept saying "well the chemo is working" but I believe it is purely the ablation that has destroyed that tumour, though the chemo might be killing off any other little blighters that lurk in the shadows so I can't totally disagree with her. Carl was desperate to stop, and she did say he could stop if he wanted to though it would be better if he completed the 9 sessions. We asked if he could stop and then start again if needed in the future and she said there was no evidence that the chemo was as effective second time around so 4 more sessions it is. He's not happy about it, but he's decided it is the best plan. His last chemo will be on the 5th of June, followed by a CT scan the week after and the oncologist the week after that.

So all in all we've had some really positive results and are both feeling very happy with the outcomes! I'm trying to not get too excited about it all though, firstly because we still need the official radiologist report and secondly because if this website has taught me anything its that this cancer can be a sneaky little so and so!

So I'm sorry if this post isn't the all singing and dancing post I feel like it should be, and it really should be as this type of result and method of treating pancreatic cancer is unheard of in this country and it's been very successful, but I've learnt to be realistic and take each day as it comes. It might not be suitable for everyone, but it has worked so far for Carl. The best thing in the short term is being able to think about a holiday in June/July after the chemo ends as we are both very very ready for it!

My last bit of advice it not to wait, get things looked at sooner rather than later. Waiting to see what happens is what they suggested to us, but this cancer is so fast acting I don't understand why waiting would ever be the best option. Strike while the iron is hot and strike hard!

We've been very lucky in a lot of ways and I am so thankful for it(if you can ever be lucky when PC is involved), the whipples being possible and completed successfully, the spread to the liver being minimal and suitable for ablation and Carl having private health care to pay for it.

I hope some good luck extends for the rest of you too and that there is a little left for us if we need it again!

Much love to you and yours
Rob
x

Bookgirl2
Posts: 13
Joined: Sat Jan 04, 2014 9:05 pm

Re: Carls story

Postby Bookgirl2 » Thu Apr 24, 2014 9:20 am

Hi Rob
I haven't posted on your thread before. I joined back in January after hearing my mum's diagnosis on New Year's Eve but was just a lurker until March. I've caught up on your thread and it's so good to read some cheering news. You sound like a wonderful couple and I'm delighted that the treatment is proving so positive, long may that continue. Absolutely delighted for you both. Susan x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Carls story

Postby Cathy » Thu Apr 24, 2014 1:40 pm

Hi Rob and Carl

Really great news. Keep on keeping on.

Cathy xx

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Thu Apr 24, 2014 4:01 pm

Thank you both it is a weight that's slowly lifting. Welcome Susan to these forums, you'll find them very useful!

I had a text from Carl (who is currently hooked up to his Folfirinox) to say his Ca19-9 is now down to 23 from 31 last time. I was hoping it was going to be back to the 7 - 12 value it was after the whipples but as long as it keeps going down that's ok with me :)

Rob
x

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

Re: Carls story

Postby sandraW » Thu Apr 24, 2014 8:52 pm

Hi there great news on all accounts for you both, I understand you don't want to get too excited, as PC is so sneaky, and you never know what is round the corner, but lets hope everything stays good. Trevor has just had his last chemo session on Tuesday and his pump off today, he has his scan on 1st May but unfortunately we have to wait until the 19th to see the oncologist, delays because of all the bank holidays and Monday is our usual chemo day. Lets hope we get some good news too, but will make sure we don't use up all the good luck, we go on holiday on the 26th May and are looking forward to it so much, so lets hope you can get away soon for some well deserved R & R. Best wishes to you both take care Sandrax

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

Re: Carls story

Postby Didge » Thu Apr 24, 2014 8:59 pm

I'm so glad to hear your news and that the Ca19-9 is still falling. It's such a roller coaster this PC isn't it? I think that is one of the things I find hardest to cope with! I do hope you manage to enjoy a wonderful holiday. We are also hoping to get a few days away before too long. It's been a long winter....

Didge x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Carls story

Postby J_T » Thu Apr 24, 2014 9:08 pm

Glad to hear Carl's story continues in a positive vein. I can well understand him wanting a chemo break but all in due course. You will enjoy your holiday all the more for the extra zaps.

KBO boys!

Julia x

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

Re: Carls story

Postby jay » Sat Apr 26, 2014 2:08 pm

Brillant news Rob and Carl
love jayne

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Sat May 31, 2014 2:00 pm

Just a quick update as I'm officially closing this thread now and won't be updating it any more, don't worry it's not 'cos he's taken a turn for the worse or anything, just his treatment is coming to an end for this round of chemo (1 more) and a then followed by a scan to see whats going on and if there are any more tumours that have appeared in the 3 months since last time. If there are we will follow the same course of ablation and chemo until that's not an option any more.

I'm sure he will post updates on his blog if you want to keep up to date,

www.Carldenning.blogspot.co.uk

though hopefully he'll be too busy with work and life to be able to.

Good luck to all those sufferers out there and my love to all of you supporting those who need it. I know how hard it can be!

Thanks for reading
Rob
x

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: Carls story

Postby Janiebobs » Sat May 31, 2014 5:40 pm

Hi Rob and Carl
Thank you for sharing you story with us. I am pleased it is going well and I am hoping my dad will be as fortunate as Karl. Also thank you for being such a good support with sound advice to others on the forum.
I will miss reading your comments and I will read Carl blog
All the best
Jane

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Carls story

Postby InfoForMum » Sat May 31, 2014 6:27 pm

Ditto what Jane said.

Love, hugs and best for the future to both of you and if you fancy staying in touch offline the moderators have my email. Suspect a right laff could be had although I would understand if you prefer to stay away from all things and people PC related.

Sarah
xxx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Carls story

Postby Slewis7313 » Sat May 31, 2014 9:16 pm

Thanks from me as well for sharing your (and Carl's) story. It has been quite a journey with a variety of options which I am sure others here will be able to draw on in the future as we head along our own paths with this illness. Thanks also for being so upbeat about your experiences even when they have perhaps been quite difficult. You certainly do need to have a giggle from time to time or you/we would all go around the bend. I have saved the link to Carl's blog and will keep an eye on his progress.

Take care both and of course good luck!

Steve
X

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Carls story

Postby LMD » Sun Jun 01, 2014 11:17 pm

Thank you for sharing...
Best wishes to you both xxx