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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Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: Carls story

Postby Dollysdaughter » Tue Mar 18, 2014 8:29 pm

Fantastic! That's so good to hear!
Sara x

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Tue Mar 18, 2014 11:15 pm

What great news for you both and thanks for the info on the cost of the ablation, we don't have private insurance, but as you say £2,000 is a quite manageable amount, and we
could possibly afford that, Trevor is similar to Carl, in the fact that he had surgery and then found the disease had jumped to his liver, so it might be an option for us too.
I hope Carl has a better time with his chemo this time take care and thanks again sandrax

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Carls story

Postby InfoForMum » Wed Mar 19, 2014 10:45 am

Wow, such amazing news. Still a 'fun' ride with chemo symptoms, but that's one heck of an anti-emetic - or an "I know I'm chucking up for a good reason now" medicine. One thing from our experience - Emend anti-emetic. It's something new, given as a pre/post procedure drug, or for more severe symptoms of chemo.

Mum's tried EVERYTHING else(domperidon,onanadestron, cyclazine, 3 others I couldn't pronounce and can't remember) and this is all that works. It's not an every day thing. It's a loading dose before chemo then 2 more tablets on days 2 and 3. Killed her nausea and vomiting stone dead after she threw up everytime she smelt more than fresh air cycle 1 Folforinox.

Aprepitant - Brand name Emend, may only be available privately. Very Very promising trial results and thought to block neural emetic symptoms, but they don't quite know how it works. Mum had no discernible side effects from it. Can also be an injection, but called something else when it is. Wiki page on it http://en.wikipedia.org/wiki/Aprepitant

Sarah
XXX

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: Carls story

Postby Ant11 » Wed Mar 19, 2014 1:21 pm

Sarah

Agree this antiemetic EMEND is the best thing with this chemo. Apparently very expensive and not always offered at some hospitals. First tablet normally taken 1 hour before infusion starts and as you say a tablet taken for day 2 and 3. An absolute godsend and possibly the only way to go to stop this violent sickness......

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Carls story

Postby nikkis » Wed Mar 19, 2014 5:49 pm

Think the injection form is Aloxi, and you can also get it as a patch that you put on the day before chemo. Paul's had the tabs and the injection, but still I'm afraid feels very sick for a couple of days, but he has to be special!

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Carls story

Postby InfoForMum » Wed Mar 19, 2014 8:36 pm

Glad you had the same experience Ant and Nikki, contrary bugger isn't he! Like Mum being told they thought she'd sail through CRT then it knocking her for 6. More on that on my thread soon. Just gathering my thoughts.

As these kind peeps have said, everybody's different (and repeat ad nauseum when unexpected symptoms occur - no pun intended!), but hope you can give this a crack and it helps!

Sarah

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

Re: Carls story

Postby RLF » Sun Mar 30, 2014 9:33 pm

It's been a week longer than I meant it to be, but here is the results of Carl's ultrasound scan down in London last Tuesday. I've copied and pasted his own words from his blog as I think is better coming from the horses mouth (or monkey's mouth as I call him)

"It is 6.49 in the morning, the alarm is on snooze waiting to let us know it's time to travel to London. This is to find out the results of the procedure and find out if it worked and got rid of my tumour.

I have not slept, and hope I haven't kept Rob awake by been restless. When I'm on chemo the sickness drugs and sleeping tablets knock me out, but I don't take them when not needed. I wish I had taken one last night.

When I did fall asleep I was having strange dreams, on a day like this you need sleep to cope with all situations the best way you can, I think I may have rely on substitute of caffeine.

Rob is driving me down to London and the appointment is around 12.00.

The last time we went to London, which was about a month ago to get the procedure done, Rob lost a small tag I had bought him at Christmas, to go around his neck that was engraved, it was not expensive and in all honesty due to my cheapskate antics, it was only held on with knot on leather cord, and that's why it fell off! It is replaceable, but I knew it upset him.

It's now 7.04, and I'm wondering if I pressed the wrong button for snooze.

We are on the motorway, it's 8.45am. My Mum arrived this morning we are getting the bedroom decorated using the money from our civil partnership, birthday and Christmas (thank you, photos to come) so my Mum is at home looking after the dog and pointing which wall should be which colour. It has been a busy household this week, while I have been sick in bed, Rob has been busy sorting out the bedroom and clearing it up, also we had a new boiler fitted yesterday, so it has been a little chaotic.

I have been asked to write a blog for pancreatic cancer action which went live yesterday. I found it hard to write as they wanted information regarding how did I find out, what were the symptoms and how did I feel. I don't really remember, I find it easer to write about the now and I find it hard to remember life before cancer.

I hope today reveals good news, one of my brothers have called and I have had good luck messages from friends by text and Facebook. It's so much more happier to tell good news, it's 9.25. I do realise I am a bit all over the place today with my blog, I am a little tired but we are having a day off the healthy eating so the sugary drinks, sweets and cookies seem to be helping with the energy levels for both of us.

When the boiler people came yesterday they moved some of our piled up items in the front of the radiator, and when I was sorting this out last night found the small tag that Rob had thought he had lost in London, I have not told him yet and want to get something a bit more secure, like a chain so it doesn't fall off, if I can do this in London I will.

11.30 and I have gone very quite, Stress and tiredness as taken over.

12.00, we see Professor I explain that I have not slept.

It's now 12.50 and we are on our way back, I don't want to go all deep or should I say try and go all deep but I feel so tired and confused and emotional right now, I will blame that.

We can not change things in the past, and we can only steer for the future, so with that in mind the only amazing truth we have is the very now, and right now I am so glad to say the procedure worked, and the tumour has gone, the professor is happy with the results and he thinks my tumour count will go down further.



It's nice to give good news, I can hear the relief in my parents voices when I tell them, and both Robs and my family can continue with there day without worrying about us, it's a friends birthday today and it was not spoilt with bad news.

I gave Rob the lost tag, the engraved tag says "be happy"

Today's a good day x"

Now we both know there is a long long road ahead but we feel that this is the best possible outcome we could have asked for and has been a nice positive bit of news to help push us onward on this journey. Carl is skipping a week of chemo this month as we have something he really wants to do, but as his Ca19-9 is down to 31 they are ok with us delaying it. I hope the next blood tests show the Ca19-9 is down closer to his normal 7 - 9 readings and hope even more that his CT scan on the 17th of April is clear of any other nasties.

We are still eating well and holding to the new diet, but this weekend we are in Brussels and we have eaten to excess all the things we have been staying away from. Going home tomorrow and will be back on the diet, though I've enjoyed our 2 day holiday away from it all and even more so planning another one on our return!

Much love,
Rob
x

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Sun Mar 30, 2014 9:59 pm

Hi
Thats really great news for you both and all the families, glad you enjoyed your weekend in Brussels. take care sandrax

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Carls story

Postby nikkis » Sun Mar 30, 2014 10:04 pm

Such fantastic, wonderful news Carl and Rob, and news that you both deserve. Glad to hear you have also had a weekend of indulgence, I am sure that will have done far more good than harm!
Take care both of you,
Nikki

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

Re: Carls story

Postby J_T » Sun Mar 30, 2014 10:20 pm

So pleased to hear your good news Carl and Rob. Onwards and upwards.

Julia x

jules 2015
Posts: 55
Joined: Mon Sep 23, 2013 10:20 pm

Re: Carls story

Postby jules 2015 » Sun Mar 30, 2014 10:42 pm

Hi
Lovely to hear some positive news, hope Carl stays well and continues to improve.
Julie x

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: Carls story

Postby Janiebobs » Mon Mar 31, 2014 12:17 am

It is fantastic to read something so positive. I am so happy for you both
Jane

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Carls story

Postby Cathy » Mon Mar 31, 2014 12:17 pm

Hi Rob and Carl

Such good news. I am so pleased for you both.

Cathy xxx

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: Carls story

Postby Dollysdaughter » Mon Mar 31, 2014 3:25 pm

That is just wonderful news! So happy for you both,
Sara x

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Carls story

Postby belgrade » Mon Mar 31, 2014 7:26 pm

Brilliant news for you both....long may it continue.

Hilary x