Folfirinox- seems to be working!

[nikkis]

Thanks Julia,

When he mentioned the Abraxane I remembered you saying you couldn't get funding, and I think he was surprised that I knew this could be a problem, but he has got it funded in the past. We will see. This forum can really make it seem that you know what you are talking about!

Nikki

[J_T]

Indeed nikki!

It wasn't that we couldn't get funding, we'd have paid. The authority wouldn't authorise its use, the argument being that Ray may have been sat next to someone not getting the same drugs (unlikely at our unit) and taking umbrage because we could afford to pay and they couldn't.

Life ain't fair, as we very well know.

x

[nikkis]

I suspect they make the rules up as they go along Julia.

[Cathy]

Hi Nikki

I am so pleased to hear that the hospice is working out well for Paul. A very welcome relief I imagine.

I also, of course, dearly hope that the new chemo regime works well. It sounds a promising prospect so lets hope so and that there aren't any hurdles to Paul having it.

Cathy xxx

[nikkis]

Thanks Cathy, we are all having such difficult journeys.

For anyone reading this who feels anxious about getting help from their hospice I can not rate them highly enough, they really put us back in control.

Nikki

[Bee]

Hi Nikki,

Great to hear the hospice has helped and that you have a new plan, onwards and upwards.

Bee xx

[EmmaR]

Hello Nikki,

What a great job you are doing for you man !

Love and hugs to you both xx

EmmaR

[Bee]

Hi Nikki,

Just wondering how things are going and if Paul is home yet?

Fingers crossed all is going to plan !

Bee xx

[nikkis]

Hi Bee,

Still officially in the hospice, but most days he comes home once they have reviewed his meds. Hopefully we are getting there with the pain, the hospice are determined to crack it! New chemo on Wednesday so that may help.

Hope you are doing ok,

Nikki

[nikkis]

Thought it was time to post an update. Paul has had one gemcitabine with abraxane, due the second next Wednesday. The plan is for him to have 3 and then scan again, and see if he is feeling any better, as pain and vomitng can still be an issue. He is still officially in our local hospice, but we come and go, home most of the item, and off to London for chemo.

The problem is that Paul had nausea for 8 days post chemo ,when this only lasted for 4 days post folfirinox. The hospice docs have been relentless in trying to help with this, but nothing has really helped. Something Sarah said in her post resonated with me, about doctors not being will to pick up a book Or a phone. We see a team of doctors at the hospice and they have all researched abraxane as they hadn't any previous knowledge of this. They also read every letter written about Paul, to have a better understanding of what is going on, and talk to each other,amazing, if only it was always like this. We have had private and NHS care and it had never come close to this standard ,why not? Their feeling is that if the abraxane continues to make Paul feel this rough, it's benefits are outweighed by the side effects,but they support us in whatever we want to do.

So we shall see how the next one goes.

Take care all,

Nikki

[Bee]

Hi Nikki,

Good to have an update was wondering how you were getting on.

Sorry to hear about the nausea, fingers crossed it improves. I am so glad to hear you are getting fantastic care from the hospice, ours was amazing.

Keep us posted and don't forget about you in all of this!

Bee xx

[InfoForMum]

Same as Bee said Nikki, every word. Take 5 minutes to try and clear your head whenever you can and remember you're doing all you can. I wish paul peace and control over that pain and hope he has some good rest.

Sarah

XXX

[Cathy]

Hi Nikki

Ditto the others.

Having so very recently tread on this path I know how exhausting it can be fighting to get things sorted. Great the hospice doctors seem on the ball and concentrating on getting things sorted for Paul. Lets hope so and that the chemo helps with symptom control.

Cathy xx

[nikkis]

Thank you my lovely ladies, the pain seems to be under control, thanks to a subcutaneous buscopan infusion which has proved more effective than morphine for Paul's pain, which has surprised everyone.

My 14 year old is a keen cook, so I get to put my feet up with a glass of wine and eat well, a win/win situation!

Nikki

[InfoForMum]

YEY for the bright spots in this rocky journey and creds to the offspring. Enjoy hon.

Sarah

XXX

[J_T]

Nikki, great to hear Paul's pain is more under control. Enjoy the wine!

Julia x

[EmmaR]

Wine and food what more could a girl want !! and Paul having respite from his pain cherish your 14 year old with every fibre of your being which I am sure you are .

Love to you all .

EmmaR x

[nikkis]

Thank you all.

Emma your words really touched us, as that is what we are doing as a family, cherishing each other,

Nikki

[Cathy]

Hi Nikki

Thinking of you lady and your lovely man. So good to hear about pain relief. It is terrible to see someone you love in pain.

We're right behind you!

Cathy xx

[nikkis]

Hope it goes well on Wednesday Cathy, I know you will give Jonathan the send off he deserves. Will be thinking of you,

Nikki

[nikkis]

Hi All,

Yesterday Paul had a scan, following 2 Gemcitabine with Abraxane. Scan looked good, there has defiantly been shrinkage this time (the oncologist doesn't dare be anything than honest with us after what has happened in the past!). No longer thinking they will be able to remove the rest of the tumour, but just hoping they can keep it stable.

The downside is that Paul has had terrible peripheral neuropathy, unlike anything he has suffered in the past, resulting in him being very unsteady on his feet and unable to open any packets etc.. So this time he just had the Gemcitabine, and will have a reduced dose of Abraxane in 2 weeks. It also made him feel nauseous for a week. Paul was changed from Folfirinox at Christmas as he was so unwell, with terrible pain and sickness and the feeling was that this was no longer working. Since then the pain is minimal again, and he hadn't been sick for over a week, although he was sick this morning, just hoping that was a small blip. Since stopping the Folfirinox he has also stopped having diarrhoea.

So has the Abraxane made the difference? We don't know, we still think that the surgery last year causes issues that may just come and go. We are aware though that we are lucky to be able to give Abraxane a go, as the insurance has covered it. It does sound hopeful that NICE will approve it's use soon, so that everyone has this as an option.

Best wishes all,

Nikki

[Cathy]

Hi Nikki

Thank you for your update. I think about you and Paul a lot.

I looked into Abraxane for Jonathan a while back and spotted it caused neuropathy. He had terrible neuropathy from the folfironox so I was never sure that this would be a good option for him. The last chemo cycle they dropped oxalyplatin entirely because of that. It sounds like hopefully it's done the trick for Paul though which is great news and hope for anyone new who might soon be offered Abraxane on the NHS.

Keep on keeping on Nikki and Paul

Cathy xx

[nikkis]

Thank-you lovely Cathy,

I think of you too! From our experience it sounds like Abraxane would have been a nightmare for Jonathan, so I am sure you made the right decision there,

Nikki

[Bee]

Hi Nikki,

Like Cathy, I too think of you a lot aswell, so it's good to have an update.

Glad the scan results are so positive but not so good about the neuropathy, must be horrid for everyone. Good luck with the next treatment, keep plodding on.

Take care, all of you

Bee xx

[nikkis]

Cheers Bee,

Hope you and your children are ok.

Paul has been sick again today and feels really rough, despite only having had Gemcitabine, really hoping he will feel better soon as we would really like to have more good days before the next session. Thinking it is a cumulative thing,as a result of all the past chemo and surgery, anything now knocks him down.

Nikki