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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Marmalade

Re: Carls story

Postby Marmalade » Tue Feb 21, 2017 10:49 pm

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

Re: Carls story

Postby Elaine123 » Fri Feb 24, 2017 8:46 am

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

Re: Carls story

Postby RLF » Fri Feb 24, 2017 1:02 pm

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Carls story

Postby Dandygal76 » Mon Feb 27, 2017 3:08 am

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

Re: Carls story

Postby RLF » Thu Mar 02, 2017 5:22 pm

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
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Carls story

Postby Veema » Thu Mar 02, 2017 8:08 pm

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

Marmalade

Re: Carls story

Postby Marmalade » Thu Mar 02, 2017 10:31 pm

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
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: Carls story

Postby Proud Wife » Thu Mar 02, 2017 11:19 pm

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

Re: Carls story

Postby Elaine123 » Fri Mar 03, 2017 7:52 am

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
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Fri Mar 03, 2017 9:54 am

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
Posts: 8
Joined: Wed Jan 18, 2017 9:33 am

Re: Carls story

Postby peter2901 » Fri Mar 03, 2017 12:21 pm

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
Posts: 34
Joined: Fri Mar 04, 2016 5:21 pm

Re: Carls story

Postby Paige » Sun Mar 05, 2017 1:54 pm

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
Posts: 45
Joined: Sat Mar 05, 2016 7:53 pm

Re: Carls story

Postby patrigib » Sun Mar 05, 2017 9:04 pm

Rob,
Hope things are not too bad for you and Carl. Let us knowWhen you can.
Hope for a quiet Sunday evening
Pat

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

Re: Carls story

Postby Elaine123 » Mon Mar 06, 2017 11:54 am

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

Re: Carls story

Postby J_T » Tue Mar 07, 2017 9:43 pm

Thinking of you both Rob and Carl.

KBO

Julia x