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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Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Carls story

Postby Veema » Mon Feb 06, 2017 4:04 pm

Folfirinox stopped working for Nige after about 18 cycles. My opinion (and that's all it is) is get him on a different regime asap. Nige had a further 6 cycles of Folfirinox and they did nothing...what a waste of time...we were also seeing locum oncologists as ours was on maternity...if she'd been there, I think Nige would still be here too.

I don't want to worry you any more than you already obviously are...but I think you should definitely enquire about a change.

Loads of luck...

Vx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Carls story

Postby Elaine123 » Mon Feb 06, 2017 6:28 pm

Rob I am so sorry about the rise in Carl's Ca 19-9 markers I can imagine how worried and stressed you both are. Pete is on Abraxane and Gemcitabine dual therapy but I am not sure if Abraxane is available in England ( we are in Scotland ) .
I hope Carl is feeling ok after today's chemo and good luck for next weeks appointment and scan. Thinking of you both .
Elaine
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sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Thu Feb 09, 2017 6:09 pm

Hi Rob, Fabulous to see Carl on the TV he looks really well and sounds so positive, he also said that the chemo effects were reduced since he has tweaked his diet, long may it continued love to yoou both sandrax xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Carls story

Postby Justamo » Fri Feb 10, 2017 3:13 pm

Carl looked so good on TV that I made Peter watch it too even though he hates Gloria Honeybun. It filled Peter with optimism and positive thoughts and really brightened the day - he actually took himself out for a walk and really enjoyed himself.

I hope the current problem is just a 'blip', as you say, but meantime I'll add my prayers to yours and I'll say a few extra for you, too.
Love, Mo

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Carls story

Postby Proud Wife » Fri Feb 10, 2017 5:05 pm

Anyone know where I can watch it on catch up? xxx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Carls story

Postby Justamo » Fri Feb 10, 2017 5:08 pm

Might be on the BBC i-Player - it was on at 0915 on Thursday. Doing other things right now but if I can find it I'll stick a link on here later.
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Here you are PW

http://www.bbc.co.uk/iplayer/episode/b0 ... -episode-4

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

Re: Carls story

Postby Didge » Sat Feb 11, 2017 2:38 pm

Great to be able to watch it and well done Carl! Interesting about the apricot kernals though - no deaths recorded apart from a couple of children years ago who had been bingeing on them. So saying they can kill you is a bit misleading, like saying "don't take paracetamol for a headache, it could kill you" when in fact it is only if you overdose on them that there is a danger. I think if they were that dangerous the government would have banned the sale.

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

Re: Carls story

Postby J_T » Sat Feb 11, 2017 7:02 pm

Hi Rob, just dropped in and saw your post. Hoping things go well for Carl. I think of you both often.

KBO!

Love
Julia x

RLF
Posts: 223
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Mon Feb 20, 2017 2:55 pm

Thank you so much for your lovely comments. Yes he looks very well and still does for the most part, bit of breathlessness and his chest pains are still there but a little better.

It's hard to write out all the things I'm feeling at the moment but panic is probably the best word for now. The dr came this morning to see carl at the chemo ward as he mentioned his chest pains. So she sent him for a chest X-ray (that was clear thankfully) but her whole demeanour was different. She said things like "not many options" and "we all been too optomistic" and "things aren't looking good". I was really confused why she was saying these things, as far as I was aware we had nothing new for her to be getting weird about. So while carl had his chest X-ray I asked the nurses if Carl's ca19 had been done again, we both thought it hadn't, but it had and it's gone up again by another 900 to 4700 ish

Looks like the chemo has def stopped working so I'm taking the advice on here and have called the insurance about abraxane but he'll need a referral for that one and we don't have an oncologist through the private health care yet.

Also message the Prof and he's sent me a referral for scans so I've faxed that to the hospital in Leeds to try get that booked in. I guess there is a chance the prof might be able to do something again, though it didn't seem to have he same positive effect last time it was done as it has in the past. Makes me wonder if it was more the chemo than the ablations, but we'll never know that though and what ever it was I'm glad it worked so well for him.

Just scared and tired and well you all know...

Thanks for all your support as always x
Rob

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: Carls story

Postby stepuha » Mon Feb 20, 2017 6:32 pm

Dear Rob,
I am so sorry to hear about Carl's recent CA19-9 results.
I have not posted on your thread before but I have read it and I am very inspired by Carl's fighting spirit and your support for him.
I just wanted to point you towards the clinical trial I mentioned previously on my thread:
https://clinicaltrials.gov/ct2/show/NCT ... 101&rank=5
It doesn't appear on the Pancreatic Cancer UK clinical trial finder as it has yet to start recruiting.
I wrote to Professor David Cunningham and Angus Dalgliesh asking them for an indication of when the trial will start recruiting. On the 7th of February Prof Cunningham's secretary said the Royal Marsden hospital would start recruiting in a few weeks. She also said, however, that the trial at Royal Marsden Hospital is only open for the residents of Royal Marsden and from reading your thread I believe this is not were you live. But perhaps St George's University of London could be an option for you (if they recruit from outside London). I never received a reply from Angus Dalgliesh but I think there may have been an error with an email address. It may be best to give them a call.
The trial combines immunotherapy drug referred to as IMM-101 with different chemotherapy regimens, one of which is Gem-Abraxane.
Sending you positive energy.
Stepuha

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Carls story

Postby Proud Wife » Mon Feb 20, 2017 6:52 pm

Rob

This is so easy for me to say but try not to worry just yet. The Dr that came to see Carl, was she just a general doctor or cancer specialist? Sometimes, these people can speak out of turn if they are not specific experts in the field. Yes, Carl's increasing CA19-9 markers are a sign that things could be progressing but he's battled for 4 years and I bet there have been other times in the past where you started to worry if it could be the start of worse things to come.

Scared and tired is so perfectly normal. You also have to take good care of your health too. You have been the most amazing support to Carl, Rob and I think every single person on here knows you couldn't be doing anymore. Try to rest when Carl does because you can deal with tiredness. For the rest, just remember small steps. If the chemo has stopped working, then it's time to try something else. Carl looked and came across brilliant by the way - Mo, thank you so much for the link x

Sending you both much love and positive vibes xxx

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

Re: Carls story

Postby Didge » Mon Feb 20, 2017 8:28 pm

I suppose you could ask for a second opinion from Prof Cunningham. We were supposed to see him but accepted a member of his team to keep the waiting time down as Rob was operable. They favour younger patients and the fact that Carl has clocked up 4 years plus might be of interest to them. If you could get a private appointment it should be no problem anyway x

RLF
Posts: 223
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Tue Feb 21, 2017 11:08 am

Thanks so much for your input, as always its very appreciated!

@stepuha - Thanks for the link and info. Shame it's only at one hospital but will see what they say. Didge has recommended the same Dr so I will see if I can get a referral privately to see him.

@PW - yes it was one of our oncology team, the reassessment dr that Carl see's every 2weeks before chemo. She is Russian and ...well...very straight talking. I have definitely worried in the past yes, and it has worked out for Carl, but when the folfirinox stops working I've noticed on here things seem to go downhill very quickly. I'm trying to stay positive, I promise I'm not giving up! Neither is Carl, but this is the biggest brick wall we have hit so far.

@Didge - thanks for stopping by! I will definitely look into contacting him and seeing what he says.

Sorry if I sound a bit defeated, I know we have been lucky (in pancreatic cancer terms) but it doesn't feel it at the moment! It's just the shock of hearing that yesterday. I feel a bit better today as I'm on the ball with getting scans arranged etc even after a bad nights sleep. It's also hard being at work and not at home with him.

Rob

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: Carls story

Postby Ant11 » Tue Feb 21, 2017 12:18 pm

Hi Rob

We always think and talk about you every day. As I'm sure you know Tracy saw Professor Dalgleish and Dr Andrew Gaya, who put her on the immunotherapy. These two doctors are a breath of fresh air and so positive especially when you are younger. You may have nothing to lose making an appointment to see one of them. Andrew Gaya in particular was fantastic, both Tracy and Chris had such faith in him; he was down to earth and treats you nicely.

If you need any information, just message me xxx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Carls story

Postby Elaine123 » Tue Feb 21, 2017 3:18 pm

Hi I was sorry to read of Carl's latest results it will have turned your world on its head again. Good luck with the two new Doctors , thinking of you both.
Elaine
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