A forum to focus on treatment related issues and side effects from treatment

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

Re: Abraxane -our experiences so far

Postby InfoForMum » Wed Mar 19, 2014 8:31 pm

Lol m'dear, of course. We just don't tell them that do we ;-) <<<has her man going "right yeah!" reading over her shoulder!

S xx

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

Re: Abraxane -our experiences so far

Postby nikkis » Thu Mar 20, 2014 1:08 pm

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

Nikki

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Abraxane -our experiences so far

Postby Bee » Fri Mar 21, 2014 8:48 am

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

Re: Abraxane -our experiences so far

Postby nikkis » Fri Mar 21, 2014 9:18 am

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
Posts: 5
Joined: Fri Mar 21, 2014 7:20 am

Re: Abraxane -our experiences so far

Postby Johanna » Wed Mar 26, 2014 7:40 am

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
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Abraxane -our experiences so far

Postby MSH » Wed Mar 26, 2014 9:14 am

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

Re: Abraxane -our experiences so far

Postby Cathy » Wed Mar 26, 2014 2:07 pm

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

Re: Abraxane -our experiences so far

Postby J_T » Wed Mar 26, 2014 3:12 pm

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

Re: Abraxane -our experiences so far

Postby nikkis » Wed Mar 26, 2014 4:45 pm

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

Re: Abraxane -our experiences so far

Postby nikkis » Thu Apr 10, 2014 3:11 pm

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

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

Re: Abraxane -our experiences so far

Postby J_T » Thu Apr 10, 2014 8:08 pm

hi Nikki, so pleased to hear that everything is stable and Paul continues to be well. Nice too that you managed to get away :)

Take good care of yourself.

Julia x

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Abraxane -our experiences so far

Postby sandraW » Thu Apr 10, 2014 8:24 pm

Hi Nikki, that's really great news,and so glad to hear Paul is feeling much better, good for him "volunteering" like that! will look forward to hearing about his experiences when he goes to NICE. Glad you managed to get away and recharge your batteries. take care sandrax

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Abraxane -our experiences so far

Postby Slewis7313 » Fri Apr 11, 2014 9:10 am

Hi Nikki, good to see that Paul may be going to the NICE workshop as a patient representative. He (and you of course) with your experience are perfectly placed to contribute to the review. For information, I went to such a workshop last year to do with the drug Mastinib (which has currently been suspended pending the provision of more information from the manufacturer). I did not contribute anything of real real value, but found it very interesting. There were (amongst others) representatives from the manufacturer, a senior Oncologist and A senior NHS representative. The Oncologist was refreshing in her loose interpretation of the rules regarding who could have what treatments which really put a smile on my face. More importantly, the NHS guy did not say much and when he did was very careful in his choice of words. His only real contribution was along the lines of "at the NHS we need to be consistent" (or words to that affect). What I took from his comment was that as the CDF had already rejected Mastinib, he would expect the NHS to similarly expect NICE to reject it. On that premise, I would hope that if the the CDF has already approved Abraxane, then the NHS would be consistent and support NICE in approving it for general use?!

A bit naive perhaps, but finger crossed.

Steve
X

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

Re: Abraxane -our experiences so far

Postby nikkis » Fri Apr 11, 2014 11:49 am

Thank-you for your kind words Sandra and Julia.

Really glad to hear your news Steve, I sometimes wonder if it is the on-going chemo that keeps Paul's tumour in check, or it would be stable without it. However he was very rough at the beginning of the year before changing regimes, but then that could have been as a result of the folfirinox on top of surgery. Who knows? Will stop writing the rambles in my head as they probably only make sense to me! Nothing is clear with this disease, and everyone has a different experience.

Hopefully the more people that are given Abraxane, while the CDF has approved its use as a stop gap, and have positive results, the better chance there is of it being approved by NICE. However the restrictions seem so limiting it seems that not many will be eligible. Paul would definitely not meet the criteria. Whatever happens the more PC is discussed can only be positive.
Nikki

Johanna
Posts: 5
Joined: Fri Mar 21, 2014 7:20 am

Re: Abraxane -our experiences so far

Postby Johanna » Fri May 23, 2014 11:24 am

Thank you for your warm welcome, I really appreciate it – and I am sorry I haven’t responded earlier. I have had my hands full looking after the kids, work, dealing with mom’s disease and so forth (feeling a bit depressed, I must admit). However, I am glad to be able to report that overall mom has been feeling quite well despite the chemo symptoms. Taste disorder is one of the most annoying symptoms to her because it makes everything taste really weird and affects appetite. Despite this, mom has put on much of the weight she lost earlier – and I take it as a good sign. She has been focusing on eating well (organic, anti-cancer food, green smoothies etc. - yummy!). She will have a CT scan next Tuesday and I am feeling very nervous about it. I hope there the results will be good. Mom is hoping she could take a short break from the treatment (if the results are good) to be able to enjoy summer – but I am not sure if that will be possible. We’ll see.