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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Re: Carls story

Postby Marmalade » Wed Mar 08, 2017 6:20 pm

Hope you are both doing ok, it sounded as if this would be a busy week so just wanted to drop by and let you know that you are not forgotten.

M xx

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Re: Carls story

Postby jay » Thu Mar 09, 2017 11:07 am

Thinking of you both
Massive hugs Jayne

Proud Wife
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Re: Carls story

Postby Proud Wife » Thu Mar 09, 2017 11:08 pm

Me too xx

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Re: Carls story

Postby Elaine123 » Sat Mar 11, 2017 11:47 am

Thinking of you both and hoping if you have a booking for your venture this weekend that it all goes smoothly. Hugs.

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Re: Carls story

Postby RLF » Fri Mar 17, 2017 3:40 pm

Thank you all for dropping by and sending us well wishes. I have been on but not really felt up to posting, as bit by bit we seemed to get worse and worse news.

After the bad experience with the NHS hospital and Carl being told he has lung mets now by a oncologist we don't normally see, he rang to talk to his regular consultant. He went to see him 3 days later for a face to face, the oncologist was lovely as always and said that the chemo isnt working (his CA19-9 is now 6600) but he will look for a trial for Carl and write to a couple of hospitals to see if he can get us something which might help. This Dr said the lung nodules were not necessarily tumours but because he has a history of cancer he would consider them to be, and there was a tumour in the liver still. This made me hope the prof could do something to help Carl as he's been so good with the liver problems so far and he had told me the lung is ablatable too.

I had a call from Prof L in london the next day and he said the same, there was a liver tumour but it was unusual and he's never seen anything like it before. It doesnt look like a tumour, it's not round and ball like but thin and like paper and running on the surface of the liver. He said it wasn't something he could ablate because it's not round, but he thinks we should get a PET scan done as it looks so weird. He didn't really mention the lung and when I did he said he wasnt sure about that, it could be an infection.

This is when I guess I started to get the most freaked out by it all. I rang the private health care to see if I could get Abraxane, and they said probably but would need a private oncologist to do a report, so we found one at the BMI dutchy in harrogate and he was a lovely man and spent over an hour chatting to Carl and said he would try to find some trials and would save Abraxane in case we can't get carl on a trial as if he has 2nd line chemo it would rule him out of a lot of trials. We could do Abraxane after a trial, or it might be part of the trial combined with immunotherapy, but if you have it even once you wouldn't be accepted onto it.

The guy at our private healthcare recommended we go see a guy (another Prof) in London as he was the head of pancreatic cancer at a (hospital name removed - moderator) hospital and worked at (hospital name removed - moderator) too which is one of their hospitals. We went down yesterday and I can't tell you what a breath of fresh air he was. He pulled up Carl's scans and looked at them and said yes he can see the tumour, and he pointed it out to us. It looks like it is right next to an old ablated tumour, so im wondering if its part of that one which wasn't completely zapped and has started to grow again. He spent a long time talking to Carl and again saying what an unusual case he is and how 5 years after diagnosis (which is september this year) he should be telling him he's cured and not be dealing with these liver mets, BUT he thinks he can do something about it. He said he could do keyhole surgery and perform a different kind of ablation? I think that's what he said my mind was skipping at this point. He has booked Carl in next wednesday for a PET scan and if that comes back as only liver he will attempt to ablate it. If it comes back as liver and lung he will still ablate it and send Carl back to Prof L for the lung ablations.

I'm not counting my chickens, im really not, but i feel like the world is lifted off my shoulders at the moment. Who knows what will happen after the scan results but Carl is still so well other than his chest pains, which are getting worse again at night, but otherwise he is a picture of health. Im so hopeful we can get back on top of this again!

I've also started a new regime of supplements for him and im forcing him to take them lol. They are;

Milk thistle liquid drops - to help his liver detox from all the chemo and the cancer
Serrapeptase - enzyme that helps to break down waste cell products and cancer cells are always dying off at large rates
Acetyl L Carnatine - he has been having pins and needles again and we had great success with this in the past, in fact after just a couple days on it again he isnt complaining about them.
Coffee enemas - now he'll hate me putting this on but its again helpful to detox the liver and remove toxins
Vit C and Vit D - for the immune system
Black seed oil - supposed to kill cancer cells and in the Lab it killed 80% of pancreatic cancer cells, not tried this yet as its just been ordered from amazon, and I understand a lab test is not the same as consuming it but hey it's worth a try.

Thanks for the lovely messages and support! I do appreciate it x

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Re: Carls story

Postby J_T » Sun Mar 19, 2017 12:42 am

Good heavens Rob (and Carl) what a lot you're having to deal with. Lesser mortals would crumble under the weight of it all but still in the end you remain upbeat and positive and thank goodness for your 'breath of fresh air' consultant. It really does make all the difference.

Hoping his plans come to fruition and Carl can continue to enjoy life to the full for a very long time to come.

Lots of love to you both and KBO!

Julia x

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Re: Carls story

Postby sandraW » Sun Mar 19, 2017 10:06 am

Hi Rob, As Julia says there is a lot going on, but you seem to have it under control. Lets hope Wednesdays scan gives good news and then the ablations can sort things out again. Wishing you both the very best of luck, love sandrax xx

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Re: Carls story

Postby RLF » Fri Jun 16, 2017 12:30 pm

Hi everyone, it's been a long time since I've posted and the rollercoaster journey has been very real. In the last few months we've had highs when Drs telling us Carl just had a little disease on the liver, to lows of it had spread to his heart, to it had spread to his skin... and probably 100 other things that i've now forgotten.

Well it hadn't spread to his heart, but it did spread to his skin (I think, I never asked for the biopsy results but I'd be amazed if it hadn't) and was widespread, starting on his hand and back, and now being on his scalp, foot and probably other areas too but I've not been looking for them.

I don't want to write a long post as I don't want to have to rethink the last month or so, but Carl has been in the hospice for the last 2.5 weeks and until wednesday was doing really well, then wednesday lunch time he fell asleep and hasn't really woken up much since then. He wakes to eat an ice lolly or have a drink, he will say a few words to me, usually just "I love you" or something like that. The Dr and nurses have told me he has days left now, but he seems comfortable which is all I could ask for at this point.

I never believed we would get to this point, but I know that was foolish, but I'm so glad I had that blind faith he would get better because it has got us this far, 4 years and 9 months down the line. It's still not enough time as I only knew him for the year and a half before that, but I am so grateful that we could have this time together. I'd go through it all again without questioning if I had to.

Thanks for all your support and advice over the years, it's been very appreciated, and I send all that love back out to you all at what ever stage you find yourself. I'm scared about now having to face the world on my own, and scared about only having me to think about as if im honest Carl is all that I've really put my mind on. Without him to focus my energy into I'm going to be totally lost. I do plan to get some counselling, I do plan on taking as much support from our family and friends that I can, but I know how hard this will hit me when he is gone.

All my love to you

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Re: Carls story

Postby Didge » Fri Jun 16, 2017 12:47 pm

Sending you lots of love for the final days. You and Carl have been so inspirational to so many people. It sounds as if Carl is peaceful but I know how hard and surreal these last days are for the partner so you will be constantly in my thoughts xx

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Re: Carls story

Postby Veema » Fri Jun 16, 2017 6:06 pm

Rob, you have both been totally inspirational...and you've fought so bloody hard..you certainly can't say you didn't try, you've given it everything.

I hope Carl's remaining days are peaceful and calm. I will be thinking of you both and sending lots of love and strength.


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Re: Carls story

Postby sandraW » Fri Jun 16, 2017 7:00 pm

Rob and Carl I am devastated for you, you have both fought so hard, you were there through my and Trevor's journey and were always so supportive. thank you.
I hope when its time for Carl to leave you all, he just sleeps away, that's what happened to Trevor and it was so peaceful and lovely too in a strange way.
I am sending hugs, love and strength to you both and all your lovely families, and just remember how lucky you were to have Carl in your life and hopefully that will help soothe the pain of your loss a little. your forum friend sandrax xx

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Re: Carls story

Postby Justamo » Fri Jun 16, 2017 8:42 pm

So sorry Rob. You have been such a source of strength to your beloved Carl and you have shared every sadness and joy with him. I hope he slips away with serenity and peace and that eventually you will find solace in the knowledge that you did every single thing you could to make him happy.
With love and prayers


Re: Carls story

Postby Marmalade » Fri Jun 16, 2017 9:10 pm

Hi Rob,

We are all sad to read this. SandraW has said it all really but I wanted you to know I was thinking of you. I am so glad he has good hospice care. It can get no better than for Carl to be comfortable and to say adios with those he loves near him. You and he have done a grand job and packed as much into life as you could. I know that going on without him is scary, you are not alone in facing an uncertain future but like me you have known love and that is something truly amazing. That love will never ever leave you and nothing that happens will diminish it. I send love and prayers that this night may be calm and peaceful for you both.

Marmalade xxx

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Re: Carls story

Postby Wife&Mum » Fri Jun 16, 2017 10:03 pm

Thinking of you and Carl at this heartbreaking time, and hoping that when the time comes Carl slips away peacefully.
W&M xxx
Last edited by Wife&Mum on Sat Jun 17, 2017 12:26 am, edited 1 time in total.

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Re: Carls story

Postby stepuha » Fri Jun 16, 2017 11:51 pm

Dear Rob,
I am so sorry to read your news. I am thinking of you both and wishing you strength in facing what's to come.
Big hug