Carls story

[Dollysdaughter]

Fantastic! That's so good to hear!

Sara x

[sandraW]

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]

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]

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]

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]

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]

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]

Hi

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

[nikkis]

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]

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

Julia x

[jules 2015]

Hi

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

Julie x

[Janiebobs]

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

Jane

[Cathy]

Hi Rob and Carl

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

Cathy xxx

[Dollysdaughter]

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

Sara x

[belgrade]

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

Hilary x

[mogs]

That is such good news and so uplifting to read. Much love to you both x

[InfoForMum]

Oh guys, that's amazing! Off the back of hearing about Mike I so needed to see something like this. Brilliant, Fab, Spectacular, Mahoosively Wonderful and all the other words like that I can't think of right now.

Hugs to you both and huge good luck for the future!

Sarah

[RLF]

Hi every one, thanks again for all your kind words and well wishes, we appreciate every one of them!

Carl actually withstood chemo this time quite well, by that I mean he was only sick for one day which is a huge improvement, but sadly was still bed ridden with nausea and general wellbeing issues. He has bad deep tremors that he feels running through his whole body, I'm wondering if these are actually a side effect of the sickness driver so if he's as well as last time I think we'll try taking it off after day 3 instead of 6.

Last Thursday was the 3 month mark from starting the chemotherapy, so Carl had a CT scan to check out his liver/lungs etc for signs of any tumours. We went in Tuesday to see his oncologist to get the results. After waiting over an hour from our original appointment time (I don't know why they don't just tell you the Drs are running over an hour late and suggest going for a coffee or a walk and coming back in a bit) we went in to see the Dr. It was a lady we had seen when Carl was admitted into hospital after his first Folfirinox session not our normal oncologist. She was lovely though and although his CT scan had not had a radiologist report done (probably as it was taken just before good Friday and we went in the Tuesday after Easter Monday) she had looked at it with our normal Oncologist and they were both confident there were no signs of any other tumours. She also admitted she wasn't used to the effects of the ablation technique so was initally concerned that the tumour had actually got bigger but was confused why the density of the tissue had decreased. She then sugested that the ablation had destroyed more tissue than just the tumour (Dr Leen said that was his intention so that he got all the tumour and hopefully meaning it won't come back at that site) and that is why it appeared 5mm bigger which I then confirmed to her Dr Leen had told us he had done.

So overall she was very pleased, she showed us Carl's Ca19-9 values but none have been done since the last 6 weeks ago when it was 31. He had it done yesterday but we've not heard the results of that yet, but we all hope that it might go down further than the 31 it was previously. Back at the start of this thread I said that the oncologist said they might stop the chemo after 3 months if the ablation worked, but that wasn't the advice they gave us this time. The oncologist suggested Carl complete 9 sessions out of the normal 12 they give people. Why? I'm not entirely sure why 9, she kept saying "well the chemo is working" but I believe it is purely the ablation that has destroyed that tumour, though the chemo might be killing off any other little blighters that lurk in the shadows so I can't totally disagree with her. Carl was desperate to stop, and she did say he could stop if he wanted to though it would be better if he completed the 9 sessions. We asked if he could stop and then start again if needed in the future and she said there was no evidence that the chemo was as effective second time around so 4 more sessions it is. He's not happy about it, but he's decided it is the best plan. His last chemo will be on the 5th of June, followed by a CT scan the week after and the oncologist the week after that.

So all in all we've had some really positive results and are both feeling very happy with the outcomes! I'm trying to not get too excited about it all though, firstly because we still need the official radiologist report and secondly because if this website has taught me anything its that this cancer can be a sneaky little so and so!

So I'm sorry if this post isn't the all singing and dancing post I feel like it should be, and it really should be as this type of result and method of treating pancreatic cancer is unheard of in this country and it's been very successful, but I've learnt to be realistic and take each day as it comes. It might not be suitable for everyone, but it has worked so far for Carl. The best thing in the short term is being able to think about a holiday in June/July after the chemo ends as we are both very very ready for it!

My last bit of advice it not to wait, get things looked at sooner rather than later. Waiting to see what happens is what they suggested to us, but this cancer is so fast acting I don't understand why waiting would ever be the best option. Strike while the iron is hot and strike hard!

We've been very lucky in a lot of ways and I am so thankful for it(if you can ever be lucky when PC is involved), the whipples being possible and completed successfully, the spread to the liver being minimal and suitable for ablation and Carl having private health care to pay for it.

I hope some good luck extends for the rest of you too and that there is a little left for us if we need it again!

Much love to you and yours

Rob

x

[Bookgirl2]

Hi Rob

I haven't posted on your thread before. I joined back in January after hearing my mum's diagnosis on New Year's Eve but was just a lurker until March. I've caught up on your thread and it's so good to read some cheering news. You sound like a wonderful couple and I'm delighted that the treatment is proving so positive, long may that continue. Absolutely delighted for you both. Susan x

[Cathy]

Hi Rob and Carl

Really great news. Keep on keeping on.

Cathy xx

[RLF]

Thank you both it is a weight that's slowly lifting. Welcome Susan to these forums, you'll find them very useful!

I had a text from Carl (who is currently hooked up to his Folfirinox) to say his Ca19-9 is now down to 23 from 31 last time. I was hoping it was going to be back to the 7 - 12 value it was after the whipples but as long as it keeps going down that's ok with me

Rob

x

[sandraW]

Hi there great news on all accounts for you both, I understand you don't want to get too excited, as PC is so sneaky, and you never know what is round the corner, but lets hope everything stays good. Trevor has just had his last chemo session on Tuesday and his pump off today, he has his scan on 1st May but unfortunately we have to wait until the 19th to see the oncologist, delays because of all the bank holidays and Monday is our usual chemo day. Lets hope we get some good news too, but will make sure we don't use up all the good luck, we go on holiday on the 26th May and are looking forward to it so much, so lets hope you can get away soon for some well deserved R & R. Best wishes to you both take care Sandrax

[Didge]

I'm so glad to hear your news and that the Ca19-9 is still falling. It's such a roller coaster this PC isn't it? I think that is one of the things I find hardest to cope with! I do hope you manage to enjoy a wonderful holiday. We are also hoping to get a few days away before too long. It's been a long winter....

Didge x

[J_T]

Glad to hear Carl's story continues in a positive vein. I can well understand him wanting a chemo break but all in due course. You will enjoy your holiday all the more for the extra zaps.

KBO boys!

Julia x

[jay]

Brillant news Rob and Carl

love jayne