Abraxane -our experiences so far

[nikkis]

I thought it might be useful to write about our experiences of Abraxane so far, as so few people have had this, but really hoping it will get approved by NICE, as there are so few options out there.

Paul has now had 4 lots of Abraxane, two at a large doses and then one course of just gemicitabine and then two reduced doses of Abraxane due to the amount of peripheral neuropathy he has had. He had a scan 4 weeks ago which showed some shrinkage of the tumour, but that may have been down to the Abraxane or the course of Folfirinox he previously had. He has this combined with Gemcitabine every fortnight. Ideally it is recommended that it is give weekly for 3 weeks and then a week of, but he couldn't handle that, especially as it is a 2 hour trip to London for treatment, so this regime is a compromise.

The peripheral neuropathy is far worse than with the Folfirinox. This has improved since they reduced the dose but not gone completely, he still struggles to do buttons and his feet feel like they are permanently in blocks of ice. It also makes him feel very tired for several days, but he has been through so much in the last year.

At the end of last year Paul was being sick every day, keeping very little down. This seemed to get worse initially with Abraxane, but has improved. He is now nauseous for a couple of days post chemo and is then fine. The hospice doctor who looked after Paul when he was at his lowest at New Year, in lots of pain, came round today and says he has made amazing progress. He felt that this is an indication that the Abraxane is working. Paul is now eating the same food as the girls and I, for the first time since he had surgery last May, which is lovely for all of us. Still a bit of pain, which is worse post chemo, but so much better than it was. He has also felt ok to drive again, which feels like a major step back to some normality. He previously never let me drive him anywhere, so I had had enough of his back seat driving!

We had been considering moving Paul's care to our local hospital, which would mean just having Gemcitabine, but we feel it is worth staying with the Abraxane. Hopefully he will be able to have some chemo at home. No one had suggested this as an option, but when I asked Paul's oncologist and the insurance people they were happy to arrange this for alternate cycles. Missing a clot in Paul's arm was the latest error at our local hospital, so we struggle to feel we can put our trust in them.

As I said on Steve's thread recently, our oncologist felt that folfirinox was a better option initially for Paul, there is not enough evidence out there about Abraxane to know how effective it is, but overall I feel that our experience is positive. Another scan is planned in 2 to 3 months, so we will have more idea then whether it's doing a good job.

It's still tough, emotionally and mentally, but our next goal is a night away in a hotel, that would be another giant positive step. Take care all,

Nikki

[J_T]

Great update nikkis, its going to so useful for future recipients of Abraxane.

Its great that Paul has some shrinkage and is now eating better, all positive steps forward.

I don't know how you manage your round trip to London, when Paul has been so sick but if you have no confidence locally what else can you do? You both must be exhausted so I do hope you get your night away for a little, well deserved R&R.

Onwards and upwards.

Julia x

[RLF]

I'm glad he's doing well and eating better! The Abraxane sounds rough but Im glad he is coping with it fairly well. Fingers crossed he keeps on improving

Rob x

[Dollysdaughter]

That sounds really positive, hope it all continues well. Great to hear good news!

Sara x

[belgrade]

Good news Nikki....long may it continue.

Hilary x

[nikkis]

Thank-you Lovely Rob and Lovely Ladies, your support is very much appreciated. I am off to see our MP next month to try and get his support for the Abraxane campaign, lets hope he is just half as supportive as you all are, and it could make a difference!

Nikki

[Slewis7313]

Thanks Nikki, you are both breaking new ground with Abraxane and your taking the time to keep us fully informed is really appreciated. Good to see there are some positives and that you are looking at a night away.

Take care and again many thanks

Steve

X

[sandraW]

Thanks for the update Nikki. so glad to hear that Paul is starting to feel a bit better, and also eating better, its such a worry when you can't get them to eat. Its also so hard when they have to go for treatment that they know is going to make them feel dreadful yet you have to try to keep them positive. Made me smile about the driving, I think Trevor is quite enjoying being chauffeured around now to be honest, just sometimes he gets in the drivers seat. Hope Paul continues to improve and that you get away in the not too distant future,

take care sandrax

[cbrooks]

Good to hear paul is managing to eat better and that his tumour has shown some shrinkage Nikki, fab news. We are waiting to see if my dad can have abraxane, his oncologist wanted to give folfirinox but as my dad has a mitral valve replacement this is unsuitable for his heart, so hes suggested gemc and abraxane. He has put in a request on compassionate grounds for abraxane as he cant have folfir.. so we will wait and see if the powers that be will grant it for us. Thanks for posting Pauls experiences with Abraxane, as you said there are not many people who have tried it yet so it is great to hear of your positive experience so far with this chemotherapy. Hope you get your weekend away soon xx Cath

[nikkis]

Thank you all for your lovely comments. Cath, I really hope your Dad's oncologist can sort it out for your Dad, an oncologist that is willing to go the extra mile is a good person to have on your team.

[InfoForMum]

Thank you for the updated Nikki, I've been thinking of you. The step forward with eating can't be underestimated I think, especially with the family.

So pleased. XXX S

[Cathy]

Hi Nikki

Just catching up at the moment. Delighted to hear about Paul. I remember Jonathan complaining often of the neuropathy. I think the effects of that can't be underestimated, it was his biggest gripe after chemo ended. Good for Paul restarting driving, just keep an eye on it as the neuropathy lead to some interesting driving for us, mostly sudden stops by him not feeling the brake peddle. I found some footwarmers for Jonathan.. The ones you activate, stick in your socks and they keep warm for some time (Tescos).

Very best of luck going forwards and love to you both

Cathy xxx

[nikkis]

Thanks Sarah.

Cathy he still thinks he is a better driver than me even with the neuropathy, but of course I have always been far superior!

[jay]

Glad Paul is eating a bit better and driving. Hope you are ok Nikki

love Jayne x

[Cathy]

Nikki,

Of COURSE you have.. Heaven forfend we should suggest otherwise

Cathy xxx

[InfoForMum]

Lol m'dear, of course. We just don't tell them that do we <<

S xx

[nikkis]

Fabulous news that Abraxane has been added to the cancer drug fund list today. Well done to everyone at Pancreatic Cancer Uk,

Nikki

[Bee]

Hi Nikki,

I visit the forum and read all the posts but rarely post now, just find it difficult , but I had to post and just say how delighted I am for you ,Paul and the girls. I think of you often and wonder how you are doing. Fingers crossed for continued good progress.

Bee xx

[nikkis]

Thank-you dear Bee,

I think of you too. We are just taking nothing for granted and being grateful for every good day,

Take care,

Nikki

[Johanna]

Hello,

First of all I'd like to say that this my first post to this forum. I have been reading your posts and found them really helpful and can relate to many experiences here. I don't live in the UK, but as we don't have an active forum like this in my country (Finland), I hope you don't mind my hanging around here.

I am glad to see that Abraxane has been added to the cancer drug list in the UK now as well. I was wondering about it a bit because it was granted central approval by EMA in the EU area in January and it was subsequently approved right away in Finland - but I guess the national approval process varies a bit in each country. I'd like to share our (my mother's) experience on Abraxane so far because it is such a new drug and there seems to be relatively little information about it, so this might be useful to someone.

My mother was diagnosed with locally advanced PC in December, which was, of course, a huge shock to all of us. Her bilirubin levels were really high so they couldn't start with chemo right away and she had severe itching all over her body which took a long time to clear even after a stent was inserted. When the levels finally went down she was offered gemcitabine. Luckily, we found out that Abraxane had just been approved for use in our country (this was in late January), so after looking into it we started asking doctors about it. They said she could have it once the bilirubin levels were further reduced as she was otherwise quite fit (for some reason Folfirinox isn't used much here, so that was not an option). Abraxane was added to the regimen starting from the 2nd infusion of gemcitabine cycle 2. I would say that so far the treatment has been tough but manageable. The side effects seem to follow a certain pattern: no symptoms on the day of infusion, then on the first day after the infusion food starts to taste really weird to the point that it is diffult to get anything down. Then there are a few days of diarrhoea and other stomach problems, which disappear gradually, leaving a couple of "normal" days before the next infusion is given. Mom has not had any neuropathy at least so far. She has been feeling quite tired but has nevertheless been able to take walks and move about quite a lot. As for efficacy, we don't know yet. She had a scan recently with relatively stable results but that was only after two infusions of Abraxane, so I don't think the full effect would have been seen in that one yet.

Johanna

[MSH]

Thank you for this Johanna and congratulations on your excellent English. It's odd how Folfirinox isn't much used when your country is such a rapid adopter of new drugs. I saw an oncologist recently who was very positive about Abraxane, and when I pointed out that the study results weren't as good as Folfirinox, he said that in some individuals the response can be outstanding.

Mark

[Cathy]

Hi Johanna

Welcome to our forum, you are more than welcome to hang out here.

Very best of luck with your Mum and her treatment. It sounds as if she is doing well so far tho, as you say, early days yet. Will be looking out for your posts in future.

Take care

Cathy xx

[J_T]

Hello Johanna and welcome, and your information on the effects of Abraxane will be very useful for forum members so keep us updated.

MSH wrote: . I saw an oncologist recently who was very positive

> about Abraxane, and when I pointed out that the study results weren't as

> good as Folfirinox, he said that in some individuals the response can be

> outstanding.

>

> Mark

I watched the pcrf video and they were talking about matching the right treatment for each individual. http://www.pcrf.org.uk/pages/researcher-voice-professor-caroline-dive.html. Its obvious I suppose that what works well for one won't necessarily work well for another, folfirinox for example did not produce the desired effect for Ray,who's to say he wouldn't have fared better on gemzar, look at Brian.

My own wish is for early detection of the disease, thats the key to saving lives.

Julia x

[nikkis]

Hi to johanna, and welcome. It's interesting that your mum's side effects have been the opposite to my husbands, he has problems with peripheral neuropathy from day one, but no diarrhoea. Side effects and response varies so much from patient to patient.

Mark, we were on the train to London for Paul's chemo when I read your post, and your oncologist's comment, that some responses from Abraxane have been outstanding, gave a lift to our taxing day!

Take care all,

Nikki

[nikkis]

Dear all,

Just an update. Paul had another scan yesterday, which the oncologist described as "pretty boring"! No change from the last one, so we all agreed we like boring. Not a bad result considering he only has his chemo fortnightly (should be 3 weeks in a row and then a week off), and he has had a reduced dose due to the peripheral neuropathy. He continues to tolerate the Abraxane very well,in fact each one he seems to tolerate slightly better. Nausea now not really a problem and his hair is growing back. We even finally managed our night away at the weekend, which was lovely.

Paul has volunteered (actually, in case he reads this, I volunteered him!) to be a patient expert for PC UK, to go to NICE in August, to talk about his experience of Abraxane, and I think we can say it has improved his quality of life over the last few months. So hopefully he will stay well for this. We are very fortunate that the insurance have paid for the regime, so really hoping it can become more widely available for everyone.

I still have days when the whole thing is pretty unbearable, but at least we have good days when we can almost feel "normal",

Take care all,

Nikki