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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sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Mon Nov 07, 2016 7:34 pm

Rob, just keep on keeping on, I understand how hard it must be for you, but Carl has done so well in the past I am sure he can do it again, love to you both sandrax xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Carls story

Postby Wife&Mum » Tue Nov 08, 2016 1:56 pm

Hi Rob

I was very sorry to read that Carl is having such a tough time of it and hope that things will soon settle back down again. I'll leave Dandy to advise on the antidepressants but the new drug is Onivyde. There's some info about it on the Pancreatic Cancer Action website here:

https://pancreaticcanceraction.org/news ... ve-longer/

https://pancreaticcanceraction.org/news ... er-action/

It's not a new drug as such, it's irinotecan in a new kind of packaging. The European licence is for use as 2nd line therapy after a Gemcitabine-based 1st line therapy. The fact that Carl is on Folfirinox which already contains irinotecan probably rules him out for Onivyde unfortunately. I can't find anything publicly available about NICE offering it from Jan. Dandy must have some insider info!?!

xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Carls story

Postby Ruthus » Tue Nov 08, 2016 3:57 pm

Hi Rob

I'm so sorry to hear it's been such a tough few months. I can appreciate the psychological effects 100% and Folfirinox is such a tough regime that even the thought of it turns my stomach. Carl has responded well in the past to this chemo and the ablations so hopefully this will be the same this time around.

I don't mind sharing at all that I take antidepressants. Before my diagnosis I had suffered a few bouts of mainly anxiety with low mood for other life stressors. I had always taken Citalopram 20 mgs but after I was diagnosed I switched to 100 mgs of Sertraline which was then increased to 150 mgs. I seem to tolerate it well with no unpleasant side effects and it does seem to help. Sertraline appears to be better for anxiety and depression. I was also prescribed diazepam 4 mgs to help when feeling particularly anxious and I do use this if needed.

The newer antidepressant drugs which are more commonly prescribed are called SSRI inhibitors and work specifically with the serotonin levels/receptors in the brain. There are other types of antidepressants which can target different receptors and maybe used more if someone was having difficulty with sleep for example. In these cases drugs which are more sedating like Mirtazepine maybe prescribed but these often have more common side effect of weight gain.

I would suggest talking to his G.P and having a conversation about best one and dose to try. I have worked in mental health for 25years so have a good knowledge base around these issues. I was going to personal email you to see how You both were doing. Please feel free to send me a personal message if you want anymore advice.

Ruth xx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Carls story

Postby Dandygal76 » Tue Nov 08, 2016 11:11 pm

"irinotecan hydrochloride nanoliposomal injections" or Onivyde as W&M pointed out to me. You may already have access as you have private insurance. Interesting article here...

https://pancreaticcanceraction.org/news ... ve-longer/

My dad takes Fluoxetine as an antidepressant. It lifted the weight of the world from him in both physical and mental terms. x

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

Re: Carls story

Postby J_T » Wed Nov 09, 2016 12:59 am

Hi Rob
I don't post here often now but look in now and again.

Sorry to hear Carl is having a tough time of it at the moment. Sending good vibes that Carl picks up a bit and that the chemo doesn't affect him too much, also that further ablation proceeds with no hiccups.

I get that it must get more difficult for you both, but you always both manage to keep going and at the same support and encourage others.

Best of luck to you with this rounds of treatment.

With love
Julia x

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Carls story

Postby Dandygal76 » Wed Nov 09, 2016 11:48 pm

Ouch W&M - I just looked over this post again looking up name of dad anti depressant - I found a whole spreadsheet posted online (via NICE I am sure) re NHS funding and the fact they need to budget for irinotecan in Jan. I will go over my history. So, I have not delved into the intricacies of Folforinox, just when I think my knowledge is sound I realise I have so much to learn! I think it is because dad is not there yet and so the focus is not quite there. I am going to painfully look through my internet history now and post under my irinotecan thread rather than clog this one up.

Rob, I hope you and Carl are plodding along... one day at a time my lovelies. x

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

Re: Carls story

Postby RLF » Sat Dec 10, 2016 8:42 pm

Hi guys
Been ages again, can't believe how time flies! Carl's mood has improved a lot after getting his blood sugars undercontrol. I think he's ok for now but I will put him in that direction if he starts having more issues like that.

His main problems now are headaches, not sure if I mentioned that before, but bad headaches that are in his forehead and around his nose. The Drs are now suggesing a scan as they are concerned he has brain mets, but I think that is more of a precaution as I don't think it's common and he has no other symptoms I would equate with that.

Otherwise he is going on ok, chemo is making him very poorly as per usual, but we are coping. He's had 3 now and due another a week on monday. He had his ablation a week ago and Prof L said that he only had 2 tumours left out of the 7, one of which was near his heart? I'm very confused by that as we'd never been told there was one there from any previous scans and I don't really know what he means...in a lymph node? In the lung? But I didnt ask as Carl didn't seem that interested and I didn't want the Prof to say anything that could upset him the day after the procedure as it had all gone so well and the Prof had managed to burn the little b*ggers.

I've not been asking for ca19s either, not sure why. I used to obsess over them but I think this time I was more scared of what they might do. Out of curiosity I asked last week at the chemo session as now know Carl's tumours had reduced from 7 to 2 I knew they would have dropped. So I said to the nurse, "they were about 2500 when we last had them done, im sure they wont have gone up so just wondering what they are now" and she replied with a confused frown, "oh..er..they've gone up". My heart jumped so hard into my throat and my jaw must have hit the floor. "They are just over 4000" she said, and my mind went a bit crazy at the news, but she then said "oh actually no they dropped they were over 6000 the time before that". The news half put me at ease and half shook me up as his Ca19 has never been over 2500 before. I just told myself to think about the fact its dropped by about a 1/3 in just a couple of chemos and not mention it to Carl, so I haven't lol. As time has gone on and I see how much better Carl is getting im not worring about it so much and feel the chemo and ablation will once again help him out a lot.

Carl went to film with Gloria Honeyford yesterday, he spent the day with her for her new TV show. I don't think he's supposed to mention it, but they posted this picture online

https://www.facebook.com/maggiescentres ... =3&theater

so I guess saying he's on it isn't going to be a problem! He's filming again on Monday and is trying to get me roped in too but my comfort eating huge belly isn't making me too keen on a national TV appearance! :)

It's on in Jan (the 27th I think) but he says he doesn't think he made too much of a fool of himself!

Thanks again for all the info, my brain is pancreatic cancered out these days so it's nice you guys are keep up with all the developments for me! :)

Rob
x

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

Re: Carls story

Postby J_T » Sat Dec 10, 2016 11:42 pm

Hi Rob, things seem to be on the up again apart from chemo side effects which is to be expected. Poor Carl's body has been through such a lot, you must both be exhausted.

He looks flippin' fantastic in the picture, all power to him - and you, you make a great team. :)

KBO

Love Julia

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Sun Dec 11, 2016 4:37 pm

Hi Rob, poor Carl he suffers so much with the chemo, I do hope he feels better soon.
Those bloody CA19's !!! the fact that they have reduced is always good news just hold onto that fact, I was the same with Trevor's, obsessed is the right word, fine while they were on the way down but bloody scary when they rose, then I just didn't want to know, whats the point worrying anyway!
You sound as though you have really zonked those tumours, hopefully with the rest of the chemo, they should be sorted againand I hope there were no more forays out in his dressinggown again.
Julia is right Carl looks really well, thank him for all he does to bring awareness, and get yourself on there the more of you there is, the more there is to love, that's how I look at it anyway.
I will keep my eye out on the 27th Jan until then have a great Christmas and New Year and I hope Carl's headaches calm down, take care love sandra xx

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

Re: Carls story

Postby RLF » Thu Jan 19, 2017 9:31 pm

Hi everyone.

Oh how things change in just a few weeks! I forget what I write here until I come back and now reading it again has made me smile which is a good thing! Though sadly now I am ca19 obsessed again, Carl's dropped down to 2450 after 4 chemos dropping on avaerage about 1000ish each time, though his last reading was only down 400 to 2050 which had knocked me a little as I was so happy they were rapidly reducing. Carl had a reaction to the chemo last time so they have decided to give him a break from it, which I was all in favour of until I got told his ca19 result. Now I'm a little panicked about it and I think he is too, just seems odd it's stopped dropping like it did. We see the oncologist in a weeks time, I'm going to suggest a PET scan to see if there are any signs of tumours but not sure what they will say about that. They did suggest they will do some sort of scan but it's usually just a ct scan.

Trying to not get too worked up about it, as in reality it's still gone down which is good! I know that, and want to be happy about it, it's just usually by now the ca19 is very low not still in the 2000s.

Hope the rest of you are keeping well physically and mentally!

Rob
X

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Fri Jan 20, 2017 10:45 am

Hi Rob, thanks for posting I constantly check to see how Carl and you are doing.
Its so hard when they give a break from treatment, especially as the CA19's are not where you want them to be, but the fact that they have gone down must surely be good news. Trevor's towards the end of his 2nd lot of chemo just continued to rise and rise so I am sure the fact they have reduced is good.
Its the between the rock and the hard place isn't it, his body needs a rest from the treatment, but we worry about whats happening when they are having that rest.
Anymore news on your appearance on TV you said the 27th, so that's in a week, looking forward to seeing you both.
Hope Carl starts to feel better and that you can enjoy some quality time whilst he is on his break, and try not to worry too much, easier said that done I know, but do try. take care love to you both sandrax xx

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

Re: Carls story

Postby RLF » Mon Feb 06, 2017 12:11 am

Hi Sandra, thanks for checking in on us, I do appreciate it.
Carl is on BBC one Thursday morning at 9.15 (I think). It's called food truth or scare ( again I think lol) and is running Monday- Friday at the same time. He is thinking he might have been edited out a bit as he asked when he was on and they didn't really get back to him about it and he's worried that we've told so many people to watch it and then he's not used!

We saw Carls oncologist a couple weeks ago and he said to not worry about the CA19 at all, if you look at the graph the top number been 6500 and then point it is at now 2050, thats a massive drop in 5 chemos which cheered me up and I've tried to stop focusing on it again.

Carl had a break for an extra 2 weeks from the chemo, so he had enjoyed that, but unfortunately his pains in his chest and shoulder have reared their head again and so he is suffering quite badly, being unable to sleep well at night due to the pain waking him up, which in turns means I have a bad nights sleep too and I am NOT good without it lol. He's back on it tomorrow and is dreading it, but I am looking forward to it...which sounds horrible I know! but if he's in a lot of pain again I know there is something on his liver growing, and I know the chemo will help. Its the lesser of two truly vile evils and I just hope it hits the bugger hard again! I need him to get better so we can get on a holiday again! We've become a bit too fond on cruising over the last couple years, and I really hope I can get him on another one asap as he really needs a holiday!
Rob
x

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Mon Feb 06, 2017 9:15 am

Hi Rob, Thanks for letting us know when Carl is on, in his starring role. I was beginning to think I had missed him even though I had been looking out for the programme. I have just put it on record for the week, be sure to see him then, its 9-30am by the way.
Great news about the CA19's going down, we had a discussion about them on here the other day, and going down or stable is definitely good news.
Sorry to hear Carl has his shoulder pain back again, at least when he is on chemo you feel as though you are doing something to improve things , its just a shame that it makes him feel so awful, he is brave to keep on with it.
Cruising is such a great option, we did a couple round the Caribbean and enjoyed them immensely, lets hope its not long before you can be off on another, I am sure you both need the break. take care love sandrax xx

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

Re: Carls story

Postby RLF » Mon Feb 06, 2017 11:30 am

Hi Sandra,
Yes Thursday will be interesting watching! We're both looking forward to it.

At the hospital now for Carl's chemo. Had some bad news the ca19 has jumped to 3800 when it was down to 2050. It's bee 5 weeks since the last chemo and due to Carl's pain levels I knew something was wrong so expected a rise but not by that amount. Oncologist gave carl the choice of chemo today or not, so he's doing it, but we are both scared and panicking a bit now as we worry the folfirinox has finally stopped working for him. I wish that I hadn't asked but a doctor had said it had gone down again, but she was talking about the previous one which only dropped a few hundred, and deep down I knew she was talking about that one. I didn't want to tell carl today either but he saw me talking to the nurses and he can read me like a book so I had to tell him. So we're both now very worried and confused.

They said they will bring the scan forward and have a clinic appointment next week but our oncologist is on holiday so will be with a different one which isn't ideal.

I'm praying (which for me is a rarity!) that it's just some blip. Or that maybe abraxane could do something if the folfirinox has stopped working. But I know from here how quickly people deteriorate when the chemo fails and that's what's freaking me out the most.

Sorry for the venting but there aren't many places to do it!
Rob
X

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Mon Feb 06, 2017 1:10 pm

Rob, That's what we are here for, you rant away, its all so shitty, at least you can get the scan brought forward, it might give an insight as to what's going on
Its good that he has had the treatment today at least you feel as though you are doing something and of course you are scared who wouldn't be.
Carl has done so well and if the furry fox has given all it can, people are doing well on abraxane or even abraxane and Gem I think it is as a combo, I am sure there are things out there they will offer him.
I understand about the prayers too, will make sure I put a word in for him, you take care love to you both Sandrax xx