Abraxane status?

[Lisajb]

Hi

I saw that there was mention of Abraxane being approved for nhs use in a post earlier in the week but I can't find anything about it when searching. Can anyone point me in the right direction please? My sister has had two cycles of Folfirinox but has been so unwell and lost so much weight - down to less than 6 stone, that the consultant has said that she must stop the furry fox and switch to gemcitabine. I am aware that the trials of gemcitabine and Abraxane achieved a small but significant increase in survival over gemcitabine alone and I would like this to fight for this chemo to be considered but need some more info. I am very grateful for any pointers.

Thanks

Lisa

[nikkis]

Hi Lisa,

Sorry to hear your sister is having a tough time. Hopefully you can find PC UK's statement on Abraxane through this link-

http://www.pancreaticcancer.org.uk/about-us/press-office/press-releases-and-comments/press-release-abraxane-for-the-treatment-of-advanced-pancreatic-cancer-added-to-national-cancer-drugs-fund-list.

I will say that Abraxane is still quite a tough option, but overall my husband has tolerated it better than he did Folfirinox, it definitely seems to be easier on his gut. I am sure the nurses here will be able to give you any more information you need if you contact them,

Nikki

[Lisajb]

Thank you Nikki that's really helpful.

Lisax

[Slewis7313]

Hi Lisa, you will find the details on the Cancer Drugs Fund page at the following link:

http://www.england.nhs.uk/wp-content/uploads/2014/03/ncdf-list-mar14.pdf

Abraxane is referred to as: 'Albumin Bound Paclitaxel' with details on page 3 of the document. It states that it will only be authorised (funded) for Type 4 Pancreatic Cancer as a first line treatment. I gather the fund reviews every application individually, so your Oncologist may be able to advise.

I hope this is of use.

Steve

X

[Lisajb]

Thank you Steve. I found the decision report via Nikki's link and saw the Stage lV criterion. I think that my sister's PC has been categorised as stage III but we are getting results of latest CT scan tomorrow and the consultant's approach this week since she viewed the scan suggests that the situation may have worsened so I am trying to formulate plan B in advance of meeting tomorrow. Do you know if treatment at an earlier stage ie. Folfirinox at Stage 3 suspended before planned end, would preclude Abraxane as a first line intervention at stage 4?

Thanks for your help.

Lisax

[Slewis7313]

Hi again Lisa, the criteria are unfortunately rather restrictive and I have no experience or knowledge to know how the fund administrator's would view a partial, aborted initial treatment with Folforinox. I would imagine how your Oncologist presents your situation/case to the fund would perhaps influence any decision. Wish I could be of more use!

Steve

X

[Lisajb]

Thank you anyway. I have found all your posts, and those of everyone on these forums, really helpful in directing my thinking around how best to support my sister and have been grateful to all who are able to share some of their experience in such a difficult time. I am trying to keep hopeful for positive news tomorrow but the medic's behaviour and her suggestion of stopping chemo altogether is pointing to a more negative result.

Lisax

[Guest]

Sorry for interrupting on this thread, but I asked my dads oncologist about Abraxane and he point blank said no, it isn't available. He didn't even let me finish speaking. This was on the 4th March. My dad is stage 4. Should I ask for this again?

[Lisajb]

Hi Leila

There are two things I would say - the first is that no matter what the oncologist thinks there is absolutely no excuse for a lack of basic manners. I am a health professional myself, thankfully not a medic, and I have yet again been shocked by the arrogance and lack of ability to interact with respect and compassion that I have observed and seen described by forum members. To cut you off without explanation is rude and unprofessional and I am very sorry you have been treated in that way.

The second thing - as Steve says Abraxane has been accepted onto the Cancer Drugs Fund list with some quite restrictive criteria which is what led me to ask whether anyone knew how strictly criteria such as these are applied. Have a look at the links - the review decision report is quite complex but is clear in the last paragraph about who is eligible. This decision was only made last week so it may be worth another discussion. I realise that the oncologists are working in a highly emotionally charged area of work and probably use 'close down' strategies to manage their own feelings of helplessness and despair but this is no excuse for the absence of basic human kindness. I am finding that I need to be one step ahead as my sisters oncologist doesn't offer information due to her belief that my sister doesn't want to know.

Lisax

[Guest]

Thank you so much Lisa,

I will take a look. The last time we saw the oncologist, he didn't tell us anything, apart from the obvious! I really felt I had to keep questioning. I knew about Abraxane from people on this site, and that was why I asked about it. When I asked Dr. W, he didn't even give me eye contact and just shook his head and said no, no, it's not available.

I think we are in the same boat here, unfortunately. It would save heartache, and free up some mind space if we were just told what was happening.

xx

[Support Team]

Hi All,

Just to add to this thread we have now put up on our website an FAQ about accessing Abraxane through the Cancer Drugs Fund (England) and the rest of the UK. http://www.pancreaticcancer.org.uk/campaigning/abraxane-faq

The criteria under which the Cancer Drugs Fund have agreed to fund it's use can be found here http://www.england.nhs.uk/wp-content/uploads/2014/03/ncdf-list-mar14.pdf Abraxane is referred to as: 'Albumin Bound Paclitaxel' with details on page 3 of the document (as already signposted by Steve).

Abraxane was only added to the Cancer Drugs Fund list on 20th March 2014.

Best wishes,

Anna

Support Team

[Lisajb]

Hi all

Thank you for the info about Abraxane. Unfortunately my sister is not considered well enough to manage any further chemo so we are focusing on symptom management. The latest CT has shown progression of the tumour and new spots in the liver so the consultant's opinion is that the most aggressive chemo has failed to hold back the growth and spread of the disease so it's unlikely that anything else is likely to touch it. I am not sure what to do next - accept this ruling and put everything into making her last few months as enjoyable for her and her children as possible or to continue to seek other opinions and perhaps other treatment. The consultant said that she thought quality of life was better than extending by a short time but feeling awful throughout. Although she said my sister needed to make decisions about chemo there was no chemo offered as the consultant is not prepared to administer it as it leads her to be so unwell.

So we start a new path I think with a different kind of fight - to maintain health and happiness, pain free for as long as possible.

Lisax

[Guest]

Oh Lisa, your pain oozes out. I feel for you so much, I really do.

Does your sister know everything? How is she dealing with it, or hasn't it sunk in yet ( if it ever does).

Xx

[nikkis]

Lisa,

I am so very sorry to hear your news, how very sad for all of you. Your sister can ask for a second opinion if that would help. Our local hospice have been fantastic for symptom management, and my children have found it a welcoming place, so hopefully there is somewhere local to you that can support everyone. No one can take the sadness and pain away, but they can make it very slightly easier to bear.

Please feel you can post whenever you need to let off steam.

Take care of yourself too,

Nikki

[Cathy]

Hi Lisa,

I wonder how your sister feels? Different chemo works in different ways and tolerated differently as well. I wonder whether, if she felt she wanted to, trying something like gemcitabine might be worth a shot? It is more easily tolerated and some patients respond well to it. She could, if she wanted, have a go then stop if it was too awful?

At the end of the day it is a very personal decision for your sister and all you can do is help make sure she has all the facts available to help her make that.

I hope you are all getting the support you need, professionally or otherwise.. Ask for this if not (I'm sure you will do)

Thinking of you

Cathy xxx

[Lisajb]

Hello all

Thank you for your thoughtful replies. My sister now knows the full truth of the disease - she hadn't wanted to know much about it for the first couple of months but gradually she has become more able to take on information and yesterday the consultant was very clear about the timeframe being a few months. She was shocked but has been energised by this news in some ways and is keen to do all she can to improve her life expectancy.

We discussed gemcitabine alone as well as combined with Abraxane. The consultant believes Dom is too weak to cope with anything. Dom herself is unsure as she was so poorly on Folfirinox and it failed to achieve anything so I think she feels that the chemo route has nothing to offer. We have had second opinions from another oncology team a few weeks ago and this consultant essentially said he would do nothing different now or future to her routine consultant and the surgical teams have all agreed that there are no options for surgery. It does seem that there are no choices available and so following the symptom management path appears the only way forward. She is following dietary advice from cancer active - no sugar, minimal dairy, organic where possible and green tea and green juices. The rest of her body will benefit hopefully and she feels that she is doing something to help herself.

I feel helpless but not ready to give in.

Lisax

[PCUK Nurse Dianne]

HI Lisa,

Sorry to read your thread, and thank you to the 'forum family' for all your support. Please feel free to be in contact Lisa, sometimes a conversation about weighing up treatments and quality of life can be helpful. We can guide you, looking at your sister's current state, and Cathy's thoughts on considering Gemcitabine are very valid. You mentioned that you have had a second opinion, well done there. If you do feel up to having a conversation about this, for your own worth even if not to change anything for your sister, please do feel free to be in contact.

Dianne,

Support Team