Carls story

[Justamo]

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.

X

Here you are PW

http://www.bbc.co.uk/iplayer/episode/b08f07mz/food-truth-or-scare-series-2-episode-4

[Didge]

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]

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]

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]

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/NCT03009058?term=IMM-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 xx and xxx asking them for an indication of when the trial will start recruiting. On the 7th of February Prof x secretary said the xxx hospital would start recruiting in a few weeks. She also said, however, that the trial at xx Hospital is only open for the residents of xx and from reading your thread I believe this is not were you live. But perhaps XXXX could be an option for you (if they recruit from outside London). I never received a reply from xx 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]

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]

I suppose you could ask for a second opinion from Prof XX . 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]

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]

Hi Rob

We always think and talk about you every day. As I'm sure you know Tracy saw Professor xx and Dr xxx

, 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. xxxin 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]

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

X

[Guest]

Hi Rob,

What can anyone say? Nothing will stop you worrying but this is the rollercoaster ride so hang on in there and hope for an upswing.

I think of you often

Marmalade xx

[Elaine123]

Hi been thinking of you both and wondering if you have any more news.i hope you both have a good weekend ( well as good as can be when you are so worried about Carl )

Elaine

X

[RLF]

Thank you all again for your support. Im coping, ups and downs but coping. Nights and mornings are worst, I can't sleep properly and then wake up and maybe for 10mins totally forget about the situation just to get it hit me again. Im in work today and finding it hard to not be at home. Carl is doing as expected 4 days post chemo, he's still not feeling great but he's eating and sending me text messages about going away for a weekend which is nice.

|'ve managed to get his MRI and CT scan booked in for wednesday privately in Leeds, also got the name of a DR we can go see about getting Carl onto Abraxane if this chemo still does nothing to help him. The private health care gave us the name of a DR in London who seems pretty clued up with Pancreatic cancer, on paper at least so will try to go down and see him for a consolation at least. Sadly the one Didge recommended was not on their list of approved Drs in Carl's specific insurance.

Annoyingly Elaine, this weekend is our first gig with Carls catering company. It's in Manchester tomorrow and I can't see how he will be able to do it! So I'll have to go with one of the guys who helps us out, which isn't a problem, but I know he is desperate to go and I will be in pieces leaving him for about 16 hours. His mum will go over but I want to be with him as much as I can.

All in all I do need to snap out of this for now, he is very well in himself outside of chemo sessions and the chest pains. Ant has given me a good tip that I should get him tested for a blood clot, he has had one in the past in his leg and it went with an injection. This is very near his port so it could be something like that going on again. Though weirdly it gets a bit easier with chemo, and I think after the last ablations it did too. But worth having it checked out!

Thank you all again, it's very appreciated

[Dandygal76]

Rob... one of my dad's favourite saying was... when going hell, keep going (Winston Churchill). You need to go to work and you need to do the gig. Just push on with the hope and determination that you will come out the other side of things and that is all you can do. And yes, go away for that weekend. At the start SandraW said to me, make sure you enjoy your time with dad and I get that so much now and have some wonderful memories. It is a horrible balancing act around all of this but life still goes on and you are one of the strongest people I have encountered around this. Just do what you have to do and keep going. Please let us know the scan results, I am hopeful you will get some positive news. x

[RLF]

Well we saw a oncologist (not our normal one) today and he told Carl that he now has nodules in his lungs.

I had to leave as they were running 3 hours late and I was working, plus I didn't know they would have the results so quickly from the scan which was done in a private hospital yesterday. So I wasn't there to ask any questions and carl was very faded by it all. We don't know how many, where exactly or how big. I don't know why I am shocked as his symptoms of chest pain, and breathlessness should make it pretty obvious!

The oncologist said he doesn't think they would be ablateable, though from experience the NHS hospital oncologists don't know that much about ablations and I'm still waiting to hear from the Prof in london.

Got appointments made to see a dr in Harrogate to get abraxane authorised, that's a week Monday. Got an appointment to see another dr who is head of pancreatic cancer at a hospital down in london and that's thursday.

For now they are stopping Carl's Folfirinox, which if it isn't working I guess makes sense but having no treatment is going to be very scary even if it's just for a few weeks

I feel quite let down by the dr here because he didn't suggest any pain management for carl or anything to help his breathlessness. There might not be anything but he didn't say that, he just said wait till you see your next specialist. I thought he was a specialist! We are going to call the hospital tomorrow and see if we can talk to the regular oncologist we see and have a word about the breathing issue. It's getting quite bad especially at night time.

Rob

X

[Veema]

Sounds like the crap locum oncologist we had when we found it had spread to Nige's lungs...he actually said 'we'll have a chemo break and see how stable the disease is'...errrr...nope...it's obviously not stable if it's spread to the lungs!

I do hope you can sort something out quickly for Carl.

Vx

[Guest]

So sorry to hear you have had this news Rob, never get easier, we get the diagnosis and then every time there is a change we go through it all again.

It could be that oncology is not the right specialism to deal with Carls lung issues and something like intervention radiology or other non chemo treatments would be more appropriate. I don't know of course but am just offering up an explanation. I know your instinct is to "do" something so I hope that you will get the information and help you need.

Much love,

Marmalade x

[Proud Wife]

Hi Rob

I don't know if I've posted this on Carl's thread or on someone else's but I will repeat just in case it helps.

I'm sure it must be very frightening for both of you when Carl becomes so breathless and if he panics, it will make it worse. If you don't already have at home, go and get an electric fan and a couple of hand held battery ones. When Carl feels breathless, provided of course he doesn't need medical assistance, hold the fan gently in front of his face, the air will make it easy for him to breathe. I was taught this by one of my hubby's nurses.

I so wish the news had of been better. Hopefully you will get more information tomorrow but I do agree with Marmalade that perhaps treatment other than chemo may be the way forward for Carl. My husband breezed through folfirinox (it could have been water going through his veins) but the gemicitibane/abraxane was just pure evil and he could only tolerate 1 cycle.

Please keep us posted. Sending you both hugs xx

[Elaine123]

Hi Rob I am so sorry to hear Carl's latest results and I can only imagine how you are both feeling. I am hoping and praying that you can find another form of treatment and I know if there is one that you will move mountains to ensure Carl has it. Thinking of you both. Hugs to both

Elaine

X

[sandraW]

Hi Rob, sorry to hear the news is not too good, but you seem to have everything covered as usual, and hopefully if you can get Carl on Abraxane then things will quieten down again.I can understand how scary this is for both of you. Don't forget we are here when you need us sending cyber ((hugs)) to you both, love sandrax xx

[peter2901]

Hi Rob - so sorry to hear the news is not so good. BUT keep on fighting. I can see that you're doing everything you can to find other treatments and that's the way forward. All we can do is keep on going, find out as much as we can and find the best treatment possible. Sending positive thoughts and prayers to you both. xx

[Paige]

Hi Rob,

I am so sorry to hear of the latest developments but you are doing all the right things and I hope things will improve for you soon. Thinking of you both you and Carl.

Paige

Xx

[patrigib]

Rob,

Hope things are not too bad for you and Carl. Let us knowWhen you can.

Hope for a quiet Sunday evening

Pat

[Elaine123]

Hi Rob hope Carl had a good weekend just a note to say I am thinking of you both and I hope you can make progress this week about further options. Hope also you were able to get out with the catering business at the weekend

Elaine

X

[J_T]

Thinking of you both Rob and Carl.

KBO

Julia x