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 04, 2014 8:34 am

It's so good to hear your news Rob and so pleased to hear that Carl is doing so well. I'm a relative newcomer to this site but always feel quite uplifted by your posts and love reading/watching Carl's blog. He really makes me chuckle! My mum is being treated in Leeds and, although I have migrated to the South now, I spend a lot of time drinking coffee in the Bexley wing!
Hope Carl continues to feel better and hope to bump into you both sometime soon,
Sara x

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Carls story

Postby jay » Tue Mar 04, 2014 4:40 pm

Great news Rob and Carl, Ive been thinking about you all weekend. Im going to e- mail Carls prof in London as im considering the same treatment for my husband . He gets a scan next week and results not until end of March so I want all the options covered. Had mentioned the nanoknife middle of Jan to the chemo doctor which didn't go down too well.Take care the both of you
love Jayne
x

mogs
Posts: 27
Joined: Wed Feb 26, 2014 9:45 am

Re: Carls story

Postby mogs » Tue Mar 04, 2014 4:55 pm

Fantastic news that he is recovering so well. I hope this continues and the smile remains on his face. With love Cara x

sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Tue Mar 04, 2014 7:05 pm

Great really pleased for you both, we all needed that bit of good news,glad you had a good
weekend and that Carl is now feeling better sandrax

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

Re: Carls story

Postby RLF » Tue Mar 11, 2014 1:00 pm

Hi again everyone, time for a quick update.

@Dolly, you don't want to see Carl in the chemo ward! It's a running joke with the nurses you're dodging sick when Carl's around! But if you do, feel free to say hello, just wear an apron or stay a good foot away lol

@Jay, how did the emailing go? Would be interested to hear what he said.

@Cara and Sandra, thanks for the well wishes :)

Well Chemo was last Wednesday, this time they attacked the side effects even harder and gave Carl the syringe driver really early that day before they started the chemo and for 5 days after it. It worked quite well and he was only sick for the first 24-48 hours and at a vastly reduced rate. By Friday he was feeling well enough to be downstairs (that has never happened until day 9 after chemo before!) and by Sunday we had gone into Leeds for a short walk in the sun and a vegetarian breakfast at a cafe by the river. Felt lovely having him so well so quick.

Things took a turn for the worse yesterday and he was feeling very rough, didn't feel well enough to do much at all and was very frustrated with himself. I tried to explain that he was doing so well as it normally takes him over a week to be up and about, but he's a very active person and I know it gets to him. Today he seems perkier and I wonder if we over did it...running before he could walk type situation and that took its toll?

He is due a scan this week to see how well the ablation worked but the Dr at the hospital (not his oncologist who was on holiday) basically said no he can't have one, he has to wait till the end of April(!) which is when his next scan is due. I wasn't at the hospital at the time so couldn't ask any questions, but I think they assumed he was requesting a CT scan but we had ultra sound scans in London which I think would be fine now. Anyway we have left messages with his actual oncologist and not heard back yet so I'll start nagging tomorrow, otherwise I'll just ask the private health care to sort one out if they willing/able to.

Not much to add at the moment other than we're looking into the Vitamin C therapy recently highlighted on the news, you can pay for intravenous infusions at around £100 a pop which is a lot, but not in the long term! Also into hydrogen peroxide therapy, as the vitamin C infusions are to create H202 (hydrogen peroxide) in the body to increase the oxygen levels which makes it difficulty for cancer cells to survive as they prefer acidic anaerobic environments. My brain is a little fried will all the info to be honest, but I can't help researching every avenue I am presented with.

Hope everyone is doing as well as they can do and thanks for reading.
Rob
x

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

Re: Carls story

Postby RLF » Tue Mar 11, 2014 6:36 pm

We'll looks like I spoke too soon. I came home from work today to find him being very sick and he has been sick quite a few times now. The syringe driver came off yesterday and it's crazy to see how he's deteriorated in such a short time. I really can't wait for him to be off this chemo! It's really hard on him :(

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

Re: Carls story

Postby Cathy » Tue Mar 11, 2014 7:04 pm

Hi Rob

Sorry to hear this. It certainly is a tough old regime and different people respond differently to it. Hopefully this is just a little dip.

Cathy xx

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Carls story

Postby Sones » Tue Mar 11, 2014 7:22 pm

Hi Rob, sorry to hear Carls having a hard time of it again and I know its hard on you too. I wish I was able to give some advice which would help. Keep strong Rob, thinking of you. Sue.x

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

Re: Carls story

Postby nikkis » Tue Mar 11, 2014 7:28 pm

Ah Rob, what a shame. I really think chemo hits your gut so much harder when you have had surgery. With Paul there is never a pattern as far as side effects go, it's tough, but hopefully worth it,
Thinking of you both,
Nikki

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

Re: Carls story

Postby InfoForMum » Tue Mar 11, 2014 7:34 pm

Rollercoaster not so tastic hon. Elated for the Cyberknife experience for you both and sad he's suffering from the vomiting. Things pick up again sooon.

P.S. Hospital chair beds <<< empathy

Lots of love

Sarah

sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Carls story

Postby sandraW » Wed Mar 12, 2014 12:23 am

Hi Rob
sorry Carl's so ill with his chemo again, Trevor had 6 cycles of 5FU then when his tumor markers went up he had a C T scan and they found 2 very tiny lesions on his liver, so they added the 2 extra drugs and he had his 3rd cycle yesterday 10th March, today he has been outside and pressure washed the patio, even with his tingly fingers, don't know what tomorrow will be like but today he has a real sense of achievement, and a clean patio lol
really hope Carl feels better soon sandrax

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

Re: Carls story

Postby RLF » Tue Mar 18, 2014 1:57 pm

Hi everyone, I'm amazed at how well some of you/your partners/family are with the fulfirinox regime! Though on the other hand the Drs are amazed at how ill Carl is on it, they told us yesterday that it really isn't a chemo that should be making him that sick. He was really ill on gemcitibine too though and that's supposed to be a relative walk in the park as chemo goes.

Yesterday was a good day, we had lots of good news all in one day so it hit us extra hard and I'm hoping that when Carl has his chemo tomorrow he is able to channel some of that positivity into it. Firstly Carl got his letters from the government saying he will get his PIP benefits and they will be back paid as well so he'll be getting 3 weeks payment in one go. I've heard that you only get the chance to be on this benefit with cancer if you are considered terminal, now he and I don't consider him terminal and we are doing everything we can to make that not the case, but I guess that with pancreatic cancer that has reached stage 4 it's considered terminal. Hmm that's a bit of a bummer actually and killed the previous buzz but I'm writing for those of you who are looking into the benefit side of things. We obviously hope he isn't terminal and these benefits can be stopped asap, but for now they will give us a lot of help. I also looked into getting carers allowance for me as im only working part time now, but sadly you are only allowed to earn less than £100 a week to qualify for that payment. Thankfully I still manage to earn much more than £100 a week but sadly that means I won't be eligible. £100 a week seems very VERY low. The other good news is Npower are fitting us with a new boiler for free too (ours is so old we have seperate boilers for central heating and hot water, they are so old British gas won't even cover them in their insurance scheme as they have no access to the parts they would need) this will make the house a lot warmer and a lot more comfortable for Carl (and me) on those colder days/nights.

Lastly and most importantly! At Carl's pre-assessment yesterday the Dr told us his CA19-9 has dropped from 224 to 78. That was taken on the 3rd March just 1 week post ablation so we're very excited that the ablation could have been a success and his tumour markers will continue to drop. On that note we are going down to London again a week today to see Proff Leen and have the special ultrasound scan done on the tumour to see exactly how well it has gone. Early signs from the Ca19-9 look good though so I'm keeping my fingers tightly crossed. I'm just amazed they hadn't told us previously! Just goes to show some Drs are more on the ball than others...

Ah yes I had talked about the cost of the nanoknife in a previous post that it would have been £13k, well I had the bill for the RF ablation (which could never be done on a pancreatic primary tumour but works on liver and I believe lung mets) and it came in at £1750 for the whole thing, proceedure, hospital, everything. We had to pay a £100 excess the rest was covered by the insurance, but no wonder they don't like the hospital at AXA! It also means as private work goes the £2000 mark is much more obtainable if needed by people, if that was a direction they were thinking of going down. Obviously prices might vary for different patient needs but I think for a single lesion that's what to expect.

I'll probably not update after chemo as we all know it will just be another "he's being very sick post" but I will definitely after we have been next Tuesday whether it's good news or not, but I'm feeling very hopeful it will be good news.

Love
Rob
x

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

Re: Carls story

Postby nikkis » Tue Mar 18, 2014 4:03 pm

Great news Rob and Carl, so great to hear everything is going in a positive direction, especially those tumour markers.

Paul receives the full pip, and thinking about it, we have had it now for more than 6 months, so I see that as a bit of a victory! Have you also got your blue parking badge and or disabled railcard? All benefits we find useful.

Good luck for next week, will be keeping my fingers crossed,
Nikki

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Carls story

Postby jay » Tue Mar 18, 2014 5:04 pm

Great news Rob and Carl xx

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

Re: Carls story

Postby RLF » Tue Mar 18, 2014 6:58 pm

Just a quick update, as we've had some further news. Carl was called into his doctors today, we didn't know this was just for a catch up so Carl was obviously very worried about what the doctor had to tell him. When he sat down he asked his GP if there was bad news for him. The GP said "oh I don't know" and started to look on his computer for any news that might be waiting for us. However there was no bad news, only further good news as Carl's ca19-9 markers have now dropped to 31 which is considered normal!

I can't explain the combination of relief, fear, joy and concern for what lays ahead. I hope and pray that this is the last we see of this hideous disease but I know we have a long way still to go!