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Abraxane -our experiences so far


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Shows you what a lovely man you have there Sandra, if all the nurses want to hug him! We have been talking about changing consultants, as Paul's is such hard work, but he has kept him here so far, which makes us reluctant to change. We also know he is at the forefront of any new developments in treatment and considered a genius, but am still not sure if that is enough to compensate for having to see someone who at times is just darn rude!


Jayne having your Christmas lunch out sounds like a really good idea. I am sure you will be spoiling Jessica rotten, something she totally deserves. Will be thinking of you, and wishing you the strength to get through your first Christmas without Jem.


Lots of love,

Nikki

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Just wanted to wish everyone a peaceful New Year. This time last year Paul's oncologist wished us a cheery "happy 2014", he had recently told us that Paul would never be never be cancer free, Paul was an inpatient in the hospice, and they were struggling to get his pain under control, plus he couldn't keep anything down, it seemed unlikely he would make it to Easter - I could have punched him!


Well our year didn't turn out as bad as I had expected, perhaps he knew something we didn't. We have managed 2 holidays, seen our eldest daughter do amazingly well in her GCSE's, and had many good days as a family. Some how Paul has survived clots and bleeds, put up with pain and sickness, so many times I have thought we are at the end of the road, but we are both so glad he is still here. It will be 2 years in January that a mass was first found (I can't say that is when he was diagnosed as we were told by our local hospital it wasn't malignant for 3 months and not to worry), the hardest 2 years of my life, but at the risk of sounding corny, years that have been made easier by sharing with you here.


So may 2015 bring some happy moments for everyone who is fighting this disease or who has lost someone they love to it, as Ronan Keating sung " life is a rollercoaster, you just gotta ride it".


Love,

Nikki

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Thanks Nikki,

for your unwavering support, I understand when you say it makes it easier somehow by being able to come on here, it is so true.

Paul has done amazingly well, what a fighter he is, I hope he can continue to beat the odds and show this disease that it has met its match. You too are amazing, keeping on picking him up and putting him back together, and staying so positive. Hope you have the best year possible in 2015 love to you both and your family too, sandrax XX

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Hi Fiona, it's lovely to hear from you, I hope Jim is doing ok on the new regime? Paul has just had his 25th gem/abraxane.

Thanks Didge and Sandra, you are such special ladies!

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Hi Nikki,

I did wonder if everything was ok as you didn't seem to have been around, was hoping you were "chilling" just to let you know we are thinking of you, hope Paul is doing ok love sandrax xx

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Hi all,

Paul didn't have his chemo last week as he was jaundiced. He has also had more pain and has lost some weight. They admitted him to hospital instead. He has had numerous scans but they cannot find a cause for the jaundice and there is still no change to the Cancer on the scan.


His oncologist feels it has probably spread to his liver but in such small amounts it can't be seen on scan, whilst the gastroenterologist thinks it is either due to a block somewhere that has since cleared, or is a side effect of the chemo. His bilirubin has been rising all week but seems to have now steadied.


So plan is for a liver biopsy this week, and then we will go from there. Tumour markers have risen to 700 but we have been told this will happen if the bilirubin rises. It is 2 years this week since he first went yellow (his first symptom),unfortunately this coincides again with my youngest daughter's birthday this week.


I am feeling slightly numb at the moment, but when the fear and emotions kick in its all pretty scary,


Nikki

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H Nikki,

sorry to hear Paul is not too well, lets hope you get the biopsy results soon, and they can get him sorted out. Your poor daughter, she wouldn't be able to celebrate her birthday with her dad in hospital. That numb feeling I know only too well, seem to have had a lot of that too ourselves, but I am sure you will get your positive hat back on, we just have to keep going don't we, no choice. love to you all take care sandrax xx

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Hi Nikki sorry to here this, will write on my post soon as to what as been happening with us (ups and downs), but let me just say ask over Pregabalin its the way forward, beloved been on this 2 weeks now no pain what so ever best he as felt over last 12 months, one of side affects weight gain, we have put half a stone on in 2 weeks, thinking about you all love wacky wacky

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Hi Nikki, sorry to hear this. I would ask questions about the biopsy. Will they be able to tell anything from it? As we know biopsies can be hit and miss - sometimes a biopsy will come back clear because it has not happened to take a piece of the affected tissue. Maybe you can ask what will happen afterwards re treatment depending on what the biopsy shows? I am convinced that Rob's cancer spread to his liver quite early last year but did not show on a scan until months later. At least if it can't be seen it must be small. Mabye they will change to a different chemo? thinking of you and hope your daughter manages to celebrate her birthday xxx

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Hi Nikki, sorry to hear of Paul's set back, hope it is short lived and that they can sort this out pronto. I know it must be so stressful but you have both doing a great job.


Julia x

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Thanks everyone, the fact that you have taken the time to write means so much.


Paul had another ultrasound yesterday and they believe they have found the cause of the problem. A bit of his bowel, below his liver appears blocked and is stopping the bile draining away. So tomorrow he is having a drain put into the billiary tree, going through the liver (sounds scary), and that can stay in for a few days or a few weeks, depending on how long it takes the blockage to drain. So they decided not to do a liver biopsy, which I think is good news.


Pain was steadily getting worse. They started him on Gabapentin at the weekend, so hoping that will work as well it has for Wacky's beloved, and yesterday they changed his syringe driver to Alfentanil from Diamorphine. He is much better today, so hopefully that is doing the trick.


I am going up and down to London, which is exhausting and stressful but somehow we cope. The girls and I are staying up on Friday night in a hotel, so we can all be together for the youngest's birthday on Saturday, which will be good.


Take care all,

Nikki

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Hi Nikki,


Pleased they not doing a biopsy, that must be one worry off your mind. Sorry about the blockage, it does sound scary, but I hope it works and makes him feel more comfortable. I wish I could give you advice, but it isn't something I have experience with. I just wanted you to know I was thinking about you. I didn't want you to feel alone.


I hope your daughter has a lovely birthday and that you all enjoy some very quality time as a family.


Leila xx

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Hi Nikki,

Sorry to hear of all Paul is going through, but glad to hear he is finally starting to improve now. Everything about this disease is scary, but Paul's procedure sounds scarier still. everything I read fills me with more trepidation of things to come.

You must be exhausted hospital visiting is stressful enough without all that extra travelling, lovely to hear that you all can stay over for your youngest's birthday I hope you can have the best time possible.

Wish we could do more to help, but hope Paul's pain decreases or at least is managed. sending love and best wishes to you all, take care sandrax xx

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Everything is a little clearer, and I have altered my previous post as I had got the wrong end of the stick slightly. Yet again our oncologist has not been very forthcoming with the truth, and we found out yesterday, from another doctor, that the disease has progressed and Paul probably has a mass on his bowel which was causing the obstruction, and the build up of bilirubin, and of course pain. The oncologist is talking about going back on Folforinox, possibly having a bowel stent. We are getting a second opinion in the next day or two. Not thinking anyone will offer anything else, but to discuss if any of these options will actually be of benefit.


From everything I know from here, I had my suspicions, but that doesn't make it any easier, especially when Paul is completely devastated. As for the consultant we have considered changing many times, but he is pretty famous in the field, and you cant help believing the hype.

nikki

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Oh Nikki,


I feel so much that we are all such a close group, all going through the worst time of our lives. Your bad news, is all of our bad news. I read your post this morning, and I just wanted to hug you. I pictured Paul how I know my dad would react, and it broke my heart. I think sometimes, we think we are the only ones going through this. I hope so much that they can drain the blockage. I also hope that chemo will blast this thing down. As I have said to Sandra about Trevor, I think Paul also has a stubborn streak and will fight this. He has got a lovely family, that love him so much. I know how much it hurts, seeing our loved one so upset and scared, but I am sure in a few days, he will have his fighting head on again.


All the best Nikki, I am thinking about you all.


Leila xx

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Hi Nikki, my mum had a bowel blockage and has a stent which they put in through the liver. This has helped her so much and she has no pain. It might not be the same but I thought it might help you to know. I hope it goes well and everything improves.

Thinking of you, Sue x

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Hi Nikki, Cant stop thinking of you, Jem had a stent put in his liver as his billary tree was blocked, You have to lie down for a few hours afterwards, jem wasn't even allowed up to the toilet.

Jessica is doing really well, I cope by pretending he 's at work, He left me a 60 page document which took him 10 months to write, even tells me when im to renew my passport.

Take care and hang in there Nikki

love Jayne

x

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Thank you all so much, my lovely PC family,



Jayne that such a lovely thing that Jem did, I imagine it gives you pleasure and sadness at the same time. It's good to hear Jessica is doing well, that is a reflection of the wonderful, loving parenting she has had.


I was just reading on Leila's post about our stubborn men. We have had 24 hours from hell, but the drain is now in, and Paul already feels that the pain is better, so hopefully like Sue's Mum this will help. So now Paul is back to his old self, determined to keep on fighting. I am home in my own bed (having spent the night in a chair in Paul's room last night), and although it is still very scary, I am hoping things have settled for now.


One thing we did do yesterday, when everything was just too much, painkillers were taking ages to come and we had the issues with Paul's consultant, was ask to speak to the hospital matron. It was a huge relief for me, as she came in, listened and took charge, sorting everything out for us. So do not be afraid to go to the top if you are unhappy, today the care we have had has been so much better.


Love to all,

Nikki

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