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

Abraxane -our experiences so far

Postby nikkis » Tue Mar 18, 2014 5:56 pm

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
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Abraxane -our experiences so far

Postby J_T » Tue Mar 18, 2014 6:55 pm

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

Re: Abraxane -our experiences so far

Postby RLF » Tue Mar 18, 2014 7:12 pm

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
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: Abraxane -our experiences so far

Postby Dollysdaughter » Tue Mar 18, 2014 8:26 pm

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

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Abraxane -our experiences so far

Postby belgrade » Tue Mar 18, 2014 9:18 pm

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

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

Re: Abraxane -our experiences so far

Postby nikkis » Tue Mar 18, 2014 9:31 pm

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
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Abraxane -our experiences so far

Postby Slewis7313 » Tue Mar 18, 2014 10:33 pm

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
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Abraxane -our experiences so far

Postby sandraW » Tue Mar 18, 2014 11:01 pm

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
Posts: 14
Joined: Tue Jan 28, 2014 11:53 pm

Re: Abraxane -our experiences so far

Postby cbrooks » Tue Mar 18, 2014 11:09 pm

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

Re: Abraxane -our experiences so far

Postby nikkis » Wed Mar 19, 2014 8:44 am

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

Re: Abraxane -our experiences so far

Postby InfoForMum » Wed Mar 19, 2014 10:29 am

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

Re: Abraxane -our experiences so far

Postby Cathy » Wed Mar 19, 2014 1:43 pm

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

Re: Abraxane -our experiences so far

Postby nikkis » Wed Mar 19, 2014 5:52 pm

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

Re: Abraxane -our experiences so far

Postby jay » Wed Mar 19, 2014 6:12 pm

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

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

Re: Abraxane -our experiences so far

Postby Cathy » Wed Mar 19, 2014 7:08 pm

Nikki,

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

Cathy xxx