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

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
an_optom
Posts: 11
Joined: Sat Nov 19, 2016 10:10 pm

Abraxane side effects

Postby an_optom » Thu Nov 24, 2016 5:03 pm

Hello guys. Not willing to give up too easily, I'm trying to find out some more information on abraxane. Whats the cost privately if anyone knows? Also how are the side effects? Are they as bad as Florfirinox?

All the advice and information would be great.

AU

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: Abraxane side effects

Postby Proud Wife » Thu Nov 24, 2016 6:44 pm

I can't advise you on costs, perhaps DG will be able to but you will find that that side effects vary from person to person so whilst one treatment may be extremely toxic to one patient and cause lots of unpleasant side effects, it may be well tolerated by another.

It's so hard to know what to do for the best, I would go for a 2nd opinion if you are in any doubt as to the treatment options currently being offered, if any.

Good luck xx

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Abraxane side effects

Postby Dandygal76 » Fri Nov 25, 2016 10:31 am

I do not have the costs for Abraxane because dad got it free on the trial he is on. I would suggest trying the HCA group of hospitals here

http://theharleystreetclinic.com/

or somewhere like BMI

https://www.bmihealthcare.co.uk/

These should be able to give you quotes and these are only 2 of many private providers (I have no idea of their oncologist service etc so these are just pointers for starters, not recommendations). You would need to find what is local to you and also to shop around - there are various private providers and the above are just the 2 I know but what I do know is that across the country the prices can vary a lot for all of these services.

My current way of viewing of this at the moment re Onivyde potential rejection is to hope that Wales may still approve it and to look into buying property there and registering with a GP there - just a thought on the Abraxane front if you are nearby (or to Scotland). We would have to see if my dad would want to live there to meet the criteria but the border is 2.45 hours away from where he currently resides but at a saving of over 1K every week I think he may be convinced if he still felt healthy and wanted to plod on. I have not looked into the detail of the rules as yet though.... I am still hoping NICE will approve it. x

xxx

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

Re: Abraxane side effects

Postby J_T » Fri Nov 25, 2016 2:26 pm

Be aware that if you go down the private funding route you will also have to pay for the nursing care etc. That's what we were told anyway.

Good luck.

Julia

an_optom
Posts: 11
Joined: Sat Nov 19, 2016 10:10 pm

Re: Abraxane side effects

Postby an_optom » Fri Nov 25, 2016 6:09 pm

I will try to get some prices. Mum had lots of fluid in her lungs, which the NHS consultant saw but didn't bother acting on. Was seen the following day privately, had the procedure to remove 1.5ltr of fluid! And they gonna try two more days! What do I say?!

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Abraxane side effects

Postby Dandygal76 » Fri Nov 25, 2016 7:37 pm

Jayne I think you are correct that there are some blockages in trying to get funded by private treatment and engage with the NHS at the same time. Dad has clearly encountered this in fact this last week where we ended up having an appointment with the NHS consultant and the clinic manager regarding what the can and cannot fund on the NHS. The problem is this does not seem consistent across the hospitals (at the trial some get more help from the NHS than others). I will be updating on dad's thread over the weekend because there is a lot to say on this and various other matters that could assist others.

An_optom... what we have clearly leaned yesterday at out appointment is that what you do outside of the NHS can clearly have bearing on what they may or may not offer your mum a) at same time as private treatment and b) afterwards as well in our case.

I will update on my own thread rather than clog up yours... they were not clear themselves and the clinic manager even said to me 'we have not encountered a lot of this before'. I am in the process of bottoming this issue out and will be e-mailing PCUK as well and reading the legislation myself. Again, I am glad I start these processes when I do.. sometimes I would rather pull out my own teeth than work within the constraints of the NHS.

Also, if it was me and if I was not happy with the NHS treatment I would also write a letter to the NHS consultant you saw on special delivery tomorrow and ask them why the private dr thought it wise to do this but the NHS did not. Also, point out how it has helped your mum if it has and that they left her distressed. Just a polite ask, copying in the GP. I find it helpful in getting an appropriate dialogue going so everyone is singing from the same hymn sheet - letters is why we had the meeting yesterday. It was a nice meeting and we understand the gaps now in expectations and policy issues so we know what we need to do to address them. x

an_optom
Posts: 11
Joined: Sat Nov 19, 2016 10:10 pm

Re: Abraxane side effects

Postby an_optom » Sat Dec 03, 2016 9:45 pm

Hello guys. Thanks for the replies. Well I've been doing loads of research, and came up with some interesting alternate therapies. Anyone heard of hyperthermia? Immunotherapy? Chemoembolization? Your thoughts would be great.

Also anyone doing special diets.... Ie Gerson or Budwig?

Thanks

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Abraxane side effects

Postby Wife&Mum » Tue Dec 06, 2016 1:10 pm

Hi an_optom,

If you're talking about alternative therapies (i.e. those taken instead of standard treatment) rather than complimentary therapies, you really have to be very careful as they can do more harm than good. So when you do your research try to stick to reputable, up-to-date websites and academic articles.

Regarding Gerson, there's a useful page on the CRUK website.
http://www.cancerresearchuk.org/about-c ... on-therapy

W&M xx

an_optom
Posts: 11
Joined: Sat Nov 19, 2016 10:10 pm

Re: Abraxane side effects

Postby an_optom » Tue Dec 06, 2016 7:16 pm

Hey W&M. Thanks for the info.
Looking into alternate therapies, it's quite interesting reading. Found lots of stuff on hyperthermia, must be some sound scientific reasoning as have found clinical trials in UK trying these. Immunotherapy seems plausible but not so effective, again as ruthus has said on her thread there's been a trial in London which is looking promising.

I'm very much a conventional therapy guy, but looking at anything that will help mum. Gerson does seem quite extreme, was looking at Budwig. Looks more scientific.

Any other comments would be great.
AU