Abraxane -our experiences so far

[J_T]

Hi Nikki what a journey you are both on, so nice to hear you renewed your wedding vows. It made so sad when you revealed how Paul was thinking, really hope the reduced dose keeps doing its work and at the same time makes Paul less unwell.

Best wishes to you both

Julia x

[nikkis]

Thank you Julia,

Paul has bounced back this evening and is convinced we are going to have a really good week! I remember when things were very bleak for us in December you and Cathy said things can turn around, and you were right. I would never have believed then that we would achieve all the things we have this year, something I try to hang on to during the dark times.

I hope you and your lovely family are coping ok,

Nikki

[Bowie]

Nikki, I agree, that's exactly how it is and I have been on the edge for 24 weeks and 1day ever since James' first scan.

I'm glad Paul's scan was OK and coping with the chemo.

Yes Sandra it is strange re the CA markers, James' have been consistently low, but apparently they don't rise in some people with this. Hope all goes well for Trevor next week.

Hope you both have a good week-end and wishing everyone dealing with all this stuff, some time when it's not all about cancer. Fiona X

[Cathy]

Hi Nikki

Just wanted to say congratulations on renewing your wedding vows and glad to hear Paul feels a little better with the reduction in chemo. He is doing so well!!!

What a star you both are

Much love

Cathy xxx

[SusannaUK]

Hi Nikki,

I also want to say congratulations on renewing your wedding vows. It is good to hear that Paul feels better with the reduced dose. It's very important that they feel better.

It is indeed true, that there is always something to worry about. This journey is not smooth.

Take care,

Susanna x

[Johanna]

Hi,

I just wanted to share with you a link I came across. This is actually not related to Abraxane but gemcitabine, but as they are used in combination, maybe I can post it here. The article cites a recent study in which chokeberry (aronia) was found to potentiate the effects of gemcitabine on pancreatic cancer cells even at low concentrations. The study was of course performed on a cell line but I figured that including some chokeberries in your diet would probably not hurt anyway (as they contain a lot of vitamins etc.). At least in my country chokeberry is available as powder which contains 100% berry, nothing else, so essentially it would be the same as eating the berries. There are also plenty of the berries available here this time of the year but I am afraid they don't taste very good.

http://www.medicalnewstoday.com/releases/282663.php

Johanna

[nikkis]

Paul is definitely coping better with the reduced chemo, he was not sick at all after the last cycle which was a first. He has needed a blood transfusion after a couple of recent chemos, but no one seems worried about this. The hospice have also changed his MST to sachets, working on the principle that the absorption may be better, and they do seem be helping.Tumour markers have gone down to 74, and we have had some lovely days and he even managed a 7km walk yesterday.

A group of my friends and I have signed up to to walk 100km along the Thames Path in 24 hours next September, for PCUK, and it's good to have something else to focus on. I have spent a lot of time sitting around this year, so it will also give me the incentive to get fit. According to one of my friends it is going to "fun" not sure about that, but a good challenge if anyone fancies joining us?!

Nikki

[SusannaUK]

Hi Nikki,

It's good to hear that Paul is coping well with the reduced chemo and also that you have had some nice quality time together. It's great that he even managed to walk that long distance. Amazing!

And what a great thing you are planning! Walk 100km for charity. Well done for signing up. I am very much interested in any walk or run event for PCUK. I've just started to search events and must admit it was too late. I should have searched for them earlier this year because now Winter is coming and running will stop until Spring time.

I will definitely do some run for PCUK (5K or 10K) in Spring.

I also will think about joining you next September for the 100km walk. It would be nice to get in touch with you somehow to get more information about it. I might ask PCUK team in a private email to share your email address with me. Only if you are ok with it. Please let me know.

Take care,

Susanna x

[nikkis]

Of course Susanna, the details are on the UK events link of the fund raising pages, but I shall ask the administrator to give you my email. Thinking of doing anything else when you have a poorly husband plus 2 small children is amazing, but it is good to have goals, just don't wear yourself out as it sounds like you get enough exercise running after your boys!

Love,

Nikki

[sandraW]

Nikkki, what great news that Paul is doing so well with the reduced chemo, and that the sickness didn't bother him. It's great that you could get out and about whilst the weather was nice, looks like autumn is well and truly on its way now.

I am glad you are looking forward to your 100 km walk, I am sure it will be fun, with loads of camaraderie, to help keep you all going, should be lovely walking the Thames Path, good on you. We are too far away to take part, but will gladly sponsor you. take care sandrax

[nikkis]

Thank you Sandra,I haven't thought of virtually anything else but Paul, his cancer and his treatment for the last 18 months, it's great to think of something else for a change. I have also put on a fair bit of weight recently as a result of slightly reduced stress and constant baking to try and fatten Paul up so, am starting training early! Hope you and Trevor are ok, and have had some good days too,

Love,

Nikki

[Guest]

Well done on the walk Nikki. I would love to have a go but don't drive and no where near London. I would like to sponsor you though?

Pleased for Paul and for his tumour markers. 74 is fantastic, that must cheer him up. Hes been so ill, I can't imagine how you cope with having children as well. Good on you for the baking as well, hope you are fattening him up well.

Leila xx

[nikkis]

Thank you Leila, that is very lovely of you, will let you know when I have my Just Giving page sortedx

[J_T]

Very good to hear Paul is happier on the reduced dose and a 7km walk to boot! Brilliant news.

Long may the positives continue!

Julia x

[Guest]

Thank you x

[Cathy]

Hi Nikki

Good on you both!!

Im tempted by the walk myself. At the moment I have another hair brained fundraising idea of doing a sponsored bike ride from London to Swanage. Bear in mind I haven't been on a bike in 20 years. Am getting a bike on Monday! If you see someone dangerously wobbling all over the shop next time you are in London that will be me.

Take care

Cathy xxx

[nikkis]

No Cathy! I am terrified of the cyclist when I have to drive into London. I will let you know when I am coming so you can stay in. Sounds like a challenging but fun(?) idea, and like me if you do lots of training you will need to eat lots of cake!

Love,

Nikki

[jay]

sorry ive not been on the forum much this last month, just caught up on your thread Nikki, fab about renewing your wedding vows and great news about paul not being as sick on the reduced chemo. We raised over a thousand pounds for PCUK at Jems funeral which im over the moon about.

take care

love Jayne

x

[nikkis]

Thank you Jayne it's really lovely to hear from you.

That's a wonderful amount of money to raise, which shows how well loved Jem was. I think about you and Jessica all the time,

and hope you have days when things are a little easier,

Lots of love,

Nikki

[nikkis]

We have recently had some relatively good weeks, when we have been able to get out and about, and keep Paul's pain under control, but of course the good times never last with this bliming thing do they?

Paul has just had a spell in hospital due to a bleed (he had dark blood in his stools) last week. They have done a colonoscopy,endoscopy and scan but couldn't find the cause, but have put it down to the cancer, his surgery and then this is all aggravated by the Clexane he has to prevent clots. However, they cant stop the clexane, as the risk of clots remains, so its a bit of a case of between a rock and a hard place, we just have to wait and see which causes the most problems. He went ahead and had his chemo after the bleed, and as a result, perhaps, had a very hard week, lots of pain, resulting in him not eating and losing weight he can't afford to lose.

I know how incredibly lucky we are that it looks like we will be having another Christmas. Since this started for us, so many have lost precious people to this nasty disease, and another Christmas is something last year I wouldn't have thought possible, but at times it's so very, very hard, and so difficult to keep positive.

Oh and then to top it all off the dog had a fit last week (he is 7), so we are taking him for an MRI scan at a specialist vets. Very worried how we will all cope if it's bad news. I might ask if they can do Paul at the same time to cut down on some appointments!

Take care all,

Nikki

[Didge]

Ha ha, good idea! Do hope the dog is ok, though. You can do without something else to worry about. I hope they manage to get the balance right with the clots and the medication and you manage to get your Christmas and are able to enjoy it. Sometimes these problems sort themselves out even when you are thinking the worst. Thinking of you x

[sandraW]

Hi Nikki, I do hope Paul improves again soon, it is such a worry for you, lets hope it all settles down soon. I certainly understand the thing about staying positive, I had a really bad week last week, was in tears about some stupid thing or other most days, nothing remotely serious in the scheme of things, but did for me anyway. As for your poor dog, I hope he is ok too, people that don't have animals just don't understand that they are such a big a part of our family, but the vets can do so much to help now. Our little Shih- tzu is just a year old, she is Trevor's little cuddle bunny, and she gets snuggled down with him when he has a nap, and keeps us entertained too.

We are blessed, just like yourselves, to have the chance of another Christmas with our loved one, when so many others will struggle through the holidays due to their loss, as you say so many have lost loved ones recently.

Please take care and lets know how they are, sandrax xx

[nikkis]

Thanks Didge and Sandra,

You always have wise words and understanding which is a comfort. The dog had his MRI today and it was good news, no masses seen. If only all the scans our loved ones went for had equally good results. Paul felt they dog had a better deal than him when it came to his specialist, the dog got an attractive Italian lady, and her communication skills were definitely an improvement on our oncologist's!

Nikki

[sandraW]

Glad the dog got good news at least! I think the only reason Trevor goes for his treatment, is he gets to cuddle all the nurses, old and young, slim or chubby, makes no difference, they all get the same treatment, as soon as they see him now, they all come straight across for their cuddle, gets a bit embarrassing to be honest. Shame about your oncologist ours is lovely, male from Greece, but been in the UK years, he has all the time in the world for his patients, found out the other day Jenni knows him from a few years ago when she worked for the NHS, small world isn't it. Hope Paul is feeling a bit better , and hope you have got your positivity back a bit now too, you have done so well not only supporting Paul and your family but all us on here too, take care sandrax xx

[jay]

Hi Nikki, hope paul continues to improve and you have a fab Christmas,and glad your dog is ok. We are thinking of getting a dog after the summer.

We are all going out for Christmas lunch as wanted something totally different, I have put loads of Christmas lights outside for Jessica who is truly an inspiration, love to everyone

Jayne

x