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RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Mon Feb 22, 2016 12:11 pm

Hi everyone, been a long time since i posted! Didn't mean it to be so long but I think i always write that :)

So it's now 22nd of Feb and as things stand Carl is doing pretty well. He's had about 5-6 Folfirinox treatments for his new liver lesions, he had a MRI scan after number 3 (or maybe 4..I think i have chemo brain now too!) and the report came back saying good words like "considerable improvement" and "drastic reduction". Originally there were 9 tumours in the liver this time around and now the report says they can see only one and its reduced from 1.8cm to 1cm in size. The only bad side is that the tumour is invading the liver capsule but only in one place now and Im hoping that the last 2-3 chemos have reduced it even further so that it's release the capsule completely.

Carl is booked in for an ablation on the 16th of March, we battled the insurance company to get it done which is where Proff works and they finally agreed to it just over a week ago. The hospital has said 3 more chemos and then a break, but we will have to see what happens. They always add 1 or 2... or 5 more on depending on what they feel like that week.

I've not been obssessing over CA19 markers this time around, I think i just cant cope with them any more, but I know they were 1700 ish in December and have been halving every 2 weeks since chemo started. I think they were about 240 the last time we were told, so they have come down very nicely too.

Carl's also now been diagnosed with diabetes, well he self diagnosed as all the drs ignored his comments on thirst, urinating and blurred vision. But after getting a blood glucose monitor from boots we went in with the reading and they were amazed how high they were (reading of 31 when normal is 5-7). He started insulin last week and they have dropped to around the 10mark, so we will start to increase the dosage of insulin over the next couple days to try to get it into the normal range. They have delayed chemo to try to bring the sugars down as the steroids given with folfirinox are know to raise blood sugar massively. Next chemo should be this wednesday and its been a month since he's had any, but im not sure how low they want his sugars before they will start it again.

Carl was also featured in a cancer research uk billboard campaign after agreeing to being photographed during a chemo session he had a reaction to the chemo and was admitted into a ward which is when the pic was taken. It's a pic of him and his mum, I'd left to go to work by this point so (thankfully) im not on the billboard too!

http://www.theguardian.com/voluntary-se ... y-campaign

there is a link to an article with a pic of it on.

Anyway, that's enough from me, hope you're all coping ok, I looked in the mirror yesterday and wondered what has happened to me over the last 3 years, im definitely not the same person I was then! Mentally, physically, emotionally. Lots of ways better, lots of ways worse, but I expect we all have the same experience there.

Much love to you all and sending out as much strength as I can spare to each of you and your loved ones.

Rob

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

Re: Carls story

Postby J_T » Mon Feb 22, 2016 12:51 pm

Blimey Carl and Rob, your lives certainly ain't dull! I guess it's been an exhausting three years for both you.

It all looks very positive and so pleased about that. Good luck with the ablation. Keep fighting the demon together, you're a great team.

Lots of love
Julia x

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: Carls story

Postby PCUK Nurse Jeni » Mon Feb 22, 2016 1:02 pm

Hi Carol & Rob,

Great to hear some positive results yet again from the chemo Rob, as hard as Carl finds it. It does seem to be doing a good job at hitting the cancer hard, which is great.

I wonder at this stage whether they might consider some form of maintenance chemo? Although of course no evidence, but seems for Carl it is doing a job while he is on it.

Sorry to hear about the diabetes, and not great that he had to self-diagnose. But good that you are both on the ball - yes, that was a very high reading. And yes, the dexamethasone will push it up - some folk can come off the steroids post chemo by adding in other anti-sickness, but I guess with Carl's reaction to chemo, not the best idea.

Take care both,

Jeni.

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Mon Feb 22, 2016 4:54 pm

Hi Rob and Carl,
That's really great news, about everything really and I am so pleased for you both, hard as it is for Carl going through the chemo at least the results are good.
He is also brave to let them photograph him when he is feeling so rotten, as is his mum too, and thanks to him and others like him hopefully we can get the message across to even more people.
Thanks so much for posting, I know its not always easy, but I think of you both often and wonder how you are getting on so its great to hear your good news.
I'm not surprised you are not the same person 3 years on, life can teach us some very harsh lessons, but I am sure the changes are all good!
Best wishes for the 16th March, but remember Carl no shopping in your dressing gown!!
sending lots of love to you both sandrax xx

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

Re: Carls story

Postby Ruthus » Mon Feb 22, 2016 5:03 pm

That's fantastic news to hear there has been such a positive results in drastically reducing liver lesions! Not such good news regarding the diabetes. I keep wondering what my blood sugars are doing. I have no excessive thirst or increase in urination. I had fasting bloods done at the G.P surgery a month ago which came back borderline diabetic. I am having my bloods done on Thursday and have a review with my consultant so will check what level they are at. I am stopping the post chemo steroids so this will be interesting to see whether I have increase in sickness (so far I have had no problem post chemo but that could be due to taking steroids, so will have to see!)

I have seen the poster of Carl and his mum. I thought it is very powerful.
I can totally appreciate how you feel very different from 3 years ago. We are 4 months in as a family and it's totally life changing!

Here's hoping Carl continues to have a great response to Folfirinox and the ablation is a success!
Ruth x

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Wed Feb 24, 2016 3:53 pm

Thanks everyone, you do all give us a boost. Carl's currently in the chemo chair and asleep so thought I would pop on again and tell you that his CA19-9 has now dropped to 100, so once again dropping by half (well just over half) and heading nicely down at a rapid rate. Was a great bit of news though it didnt really make Carl any more enthusiastic about having the chemo though he knows he is lucky to be responding so well.

I am slightly concerned by the time we go to Proff Leen for the ablation his tumour would have vanished again (like last time) and the proff will have nothing to do. Im not worried about the tumour going! But Its more the fact we go all the way from Leeds to London and just sleep in a hospital for a night and pay the £100 insurance excess for the privilege(money is very tight now I'm the only one bringing in a wage and Carl's sick pay has run out so gets only the PIP payments from the government). The Leeds hospital cant fit him in for a scan for 6 weeks and I doubt the insurance will pay for a 3rd in scan in 3months, so we will have to just go with it I guess.

Anyway, thanks again for all your input and we asked about the maintenance chemo but the dr we saw knew nothing about it. I read the links that were in the other thread and it seems promising. Carl had capcitebine with gemcitibine (spelling is wrong I'm sure) after the whipples surgery. He was pretty ill on the combination of chemos but maybe with just the tablet he will be ok, as he tolerated the 5fu part of folfirinox pretty well.

Carl really doesnt want to stop the steroids, he feels they make him feel a lot better post chemo. Whether thats actually the opposite of what they are doing I don't know. We'll monitor his blood sugars and see how they go, if he's too high i'll try and guide him in the right direction lol. But everyone is different and maybe they do actually help him more than other people.

Rob
x

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Wed Feb 24, 2016 5:43 pm

Hi Rob and Carl,
Great news about the drop in the CA19's.
Hope Carl feels better, it must be awful having to have the treatment knowing how terrible he will feel but it has got to be worth it.
love to you both, sandrax xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Carls story

Postby Sueoliver » Wed Feb 24, 2016 6:18 pm

Hi Rob and Carl,
Just wanted to send you both a big hug and say I think you are both wonderful.
Love Sue x

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Carls story

Postby Proud Wife » Wed Feb 24, 2016 6:51 pm

Hi Rob and Carl

I am new to this forum but have read your story and agree with Sue that you are both doing brilliantly!!! Fantastic news about his CA19-9 markers.

Keep up the good work both of you xx

Fifi

Re: Carls story

Postby Fifi » Sat Feb 27, 2016 12:32 pm

Hi Rob,

Thank you for updating. And sharing the very sad picture of Carl and his Mum. You just can't look at that without feeling so many emotions.

You two are truly remarkable, and Carl is such an amazing fighter.

Leila xx

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Thu Mar 17, 2016 7:09 pm

Thanks everyone for your kind words again! Just a quick update from me today but Carl had his latest Ca19-9 last week and it was down to 34 which is amazing! Then yesterday we were in London for his ablation which went ahead and the Proff said there were 2 4mm tumours left which he has now ablated and is happy they have been destroyed. Scan in a few weeks time will confirm this hopefully :)

In theory, one more chemo on this course of treatment then a break and hopefully it will be a long one for him. Annoyingly for Carl his hair hadn't started falling out till last week and its not all gone, just thinned quite a bit so hopefully he can keep his hair if it's just one more treatment to go for now.

Hope you're all doing as best as you can
Rob
x

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Thu Mar 17, 2016 7:58 pm

Hi Rob and Carl
That's really great news on all sides long may it continue. Fingers crossed he keeps that hair but it is getting warmer now anyway lol
love to you both sandrax xx

Proud Wife
Posts: 743
Joined: Sun Jan 17, 2016 9:28 am

Re: Carls story

Postby Proud Wife » Fri Mar 18, 2016 12:09 am

34 - what an amazing number and thankfully you did not have a wasted journey to London!

Keep up the good work both of you, Carl's story is a real inspiration and you are a great team xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Carls story

Postby Sueoliver » Fri Mar 18, 2016 8:13 am

Hi Rob and Carl,
Your post made me smile! Good work you two and long may it continue.
Love Sue x

Dandygal76
Posts: 763
Joined: Sat Mar 12, 2016 9:49 am

Re: Carls story

Postby Dandygal76 » Thu Jun 02, 2016 11:35 am

Rob I was wondering how Carl is doing now? I hope the ablation worked. I would love to hear an update if you have the time. x