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Faslodex (fulvestrant)

27 REPLIES 27
bonariensis
Member

Re: Faslodex (fulvestrant)

Bumping it up

Steris
Member

Re: Faslodex (fulvestrant)

Hi Liz,

Your post sounds very interesting is it the same trial that ponsmuir talked about. I'm see my oncologist for my scan results on the 6th and it great to know what's available.

Everything crossed for continuing stability on faslodex.

Love
Chris xx

lizH
Member

Re: Faslodex (fulvestrant)

Hi ponsmuir,

sounds interesting, i went to see a man at charing cross hospital before I decided to go with faslodex to talk about a trial and he did mention a trial that introduced another drug with faslodex. He told me it may be available in the second quarter of the year so i may look into it more.
Wishing you lots of luck with it and keep us posted on how you do.

I am feeling pretty good on faslodex , my next injection in a weeks time. I really do hope that it will keep me well as long as possible.

best wishes

Liz x

ponsmuir
Member

Re: Faslodex (fulvestrant) and FGFR1 screening

I'm not on Fulvestrant but yesterday was asked if I'd like to take part in a screening AstraZeneca are doing to see if AZD4547 used in conjunction with Fulvestrant could slow down progression.
I just had to give permission for a sample of my 2012 biopsy to be sent off to a lab in Belgium. If it is found to have an increase in the number of FGFR1 cells (30% of tumours do) I am told it might increase treatment options further down the line. I thought I had nothing to lose by taking part and possibly something to gain.
Steris
Member

Re: Faslodex (fulvestrant)

Hi Liz,

 

I've had a one off blast in October as I have  spines mets which helped and have pain killers for my pleural pain as I have lings mets as well.  Last scan showed everything stable so I hope its just the normal aches and pains asssociated with having bone mets,

 

If you're worried mention it to your oncologist but I really hope its nothing to worry about.

 

Love

 

Chris xx

 

lizH
Member

Re: Faslodex (fulvestrant)

Hi ladies,

I am off for my next injection Wednesday and have been well apart from the last few days!! Had some pains in my torso just on one side. It is like a stitch kind of pain. I did have some rads recently but for the other side in my hip. Starting to get anxious about this pain now! Difficult to know when to worry or wether it is a general ' normal ' ache and pain!

regards to all

Liz zx

Smartie
Member

Re: Faslodex (fulvestrant)

Hi Chris, so glad that you got the funding, hope you find it as successful a treatment as I did!
Best wishes
Smartie x

Steris
Member

Re: Faslodex (fulvestrant)

Hi.

I started Faslodex in March and was the last patient my oncologist manage to get it for as she told me NICE were not funding it because it was not cost effective so I feel very fortunate.

I feel very well on it without any se's which is amazing. I started having treatment last March.

Smartie your post really cheered me up - wow 5 years that's brilliant.

LizH - good luck with your scan and I wish you well on this treatment.

Love
Chris xx

lizH
Member

Re: Faslodex (fulvestrant)

Hi,

I live in Hertfordshire bit still go to the West Middlesex hospital where i use to live. I was funded by the hospital.

Sounds like you are having trouble getting it?

All the best and i will keep everyone up to date on how i feel . I have scans in march to see if its doing what it should. I don't know what i would do without this site, so good to talk with you all about experience.

Liz xx

Tournesol
Member

Re: Faslodex (fulvestrant)

Hi LizH

 

Best of luck with the Faslodex. Do you mind me asking what part of the country you live in and how it's being funded?

 

Best wishes,

 

Tournesol

lizH
Member

Re: Faslodex (fulvestrant)

Hi all,
I have just had my first injection today as my last scan detected progression in my bones. I had an appointment with consultant today and we talked of this treatment and also E/E , the two drugs beginning with E but can't spell them!! I decided to try faslodex and hope with all my heart that i get some goods years on it!

all the best to everyone

Liz xx

Janice
Member

Re: Faslodex (fulvestrant)

Hello everyone

 

Thought I would add that I was on this for just over a year before it stopped working.  As far as I am aware it was funded by NHS, was sorry when it stopped working as I had very few side effects.

 

Jan

Tournesol
Member

Re: Faslodex (fulvestrant)

Thanks Angelfalls!

Angelfalls
Member

Re: Faslodex (fulvestrant)

I saw my onc on Tuesday and she mentioned that a trial is in the pipeline for Faslodex. If I hear any more, I'll let you all know... Watch this space!

Tournesol
Member

Re: Faslodex (fulvestrant)

I'm in England and my oncologist recently confirmed that it was no longer available through the Cancer Drugs Fund and that the hospital would not pay for it. It is quite frustrating!

 

Tournesol

su-bee
Member

Re: Faslodex (fulvestrant)

I am coping with the postcode lottery in Wales where we don't have the drugs fund either. If I lived a few miles west I would get this drug , but it looks like I will have to pay for it 😞

Guest user
Not applicable

Re: Faslodex (fulvestrant)

Had the whole funding for Faslodex situation explained to me today by my exasperated consultant..

The original Nice appraisal was about using Faslodex instead of an aromatase inhibitors, and was rejected on cost benefit grounds. Most UK consultants however use Faslodex after an aromatase inhibitor and Tamoxifen. In some parts of the country ( mainly the North) this was paid for a system called PbR baseline tarriff. Many hospitals in the south however avoided PbR (as the hospital or Gp pays) and applied for funding from the Cancer Drugs Fund as this meant they didn't use their own budget. This CDF was organised and managed locally with local clinicians making the decision.  However with the New NHS England post April 2013 the CDF is now run nationally ( From Leeds I think ) and they took the decision to remove Faslodex from the CDF list. This means that it is still available for those areas where it has always been funded by the PbR tarriff and left floundering in areas that used the CDF. In these hospitals it now needs to go through a long complicated process to get onto the list of approved drugs for that hospital and involves resolving disputes as to who actually pays for it, the hospital, the Gp... or not at alll. My hospital has said that if they approve its use it may well not be resolved until March 2014...

It seems like we are back to post code prescribing.. I'd better move up north

Smartie
Member

Re: Faslodex (fulvestrant)

I had Faslodex from 2007 until it stopped working in 2012 so it was very effective for me, this was after Aromasin which stopped working after 12 months. I too am ER+ and HER-. I was a private BUPA patient through work so can't help on the funding issue but it was definitely a good treatment for me and well worth the sore bum every month!
Smartie x

Mildred1602
Member

Re: Faslodex (fulvestrant)

Hi Mrs Blue
I'm on Faslodex as other hormones had not halted progression in my bones or to my brain.The oncologist just made the decision! I'm about to start Taxol so I don't know if this hormone will be stopped. I think it's dependent on my pre chemo CT. I am hormone positive & HER negative. This was re-checked recently when I had a bone marrow biopsy.
Ingrid
Tournesol
Member

Re: Faslodex (fulvestrant)

Hi, following my earlier post, here's a link to a Faslodex/Fulvestrant thread on a US board.

 

http://community.breastcancer.org/forum/8/topic/702314

 

Tournesol x

Tournesol
Member

Re: Faslodex (fulvestrant)

Hi Belinda,

 

I think some have it with other drugs, some (most?) have it alone. It doesn't seem to work for that many people but there are some with very good results. I can send you a link to the thread if you like - not sure if we're allowed to post links to other BC sites here?

From what I can see it's not on the Cancer Drugs Fund list any more so I guess that means looking for any trials if I want to try it - I will ask my oncologist again when I see her next month.

 

Tournesol x

Guest user
Not applicable

Re: Faslodex (fulvestrant)

I had treatment withe this drug and unfortunately it did not work for me 😞

Good luck to anyone on this drug. What I have noticed with chemo is that what works for 1 does not work for another.

belinda
Member

Re: Faslodex (fulvestrant)

I mentioned the possibility of Faslodex a few years ago, as a last before chemo treatment. My Onc said, at the time, he would rather try something else which would work better first and my next treatment worked for 4 and a bit years. I don't know anyone who has had any success with Faslodex, do the U.S. patients have Faslodex along with anything else?

Boattripper
Member

Re: Faslodex (fulvestrant)

My treatment was through a clinical trial which I left after two months when I couldn't tolerate the trial drug (BYL) that was combined with the Fulvestrant. My Onc tried for funding from the Drugs Fund in August for me to carry on with Fulvestrant alone but didn't get it. The clinical trials unit at my hospital then agreed to carry on funding but I only had one more month's treatment, as it wasn't working anyway.
Tournesol
Member

Re: Faslodex (fulvestrant)

I think my oncologist said it might be available through the fund, last time I asked, but that was a year or two ago so things could well have changed. I would really like to try it if possible when I am done with the aromatase inhibitors before trying chemo. I know it doesn't work for that many people but some people on a US secondaries board seem to be doing well on it.

 

Tournesol

Angelfalls
Member

Re: Faslodex (fulvestrant)

I thought this one was now off the menu, since being rejected by NICE. Or can you still get it through the Cancer Drugs Fund in England?

Boattripper
Member

Re: Faslodex (fulvestrant)

Had 3 months of this treatment but not effective for me I'm afraid. My onc was not hopeful (said she had only one patient who'd responded). Funding seems an issue now as well, which must mean that it's effectiveness is not being demonstrated much. Shame.
mrsblue
Member

Faslodex (fulvestrant)

I've not noticed many posts about this treatment recently.  I had it in 2009 when on a clinical trial (SoFEA).  Is anyone on Faslodex at the moment?  If so, I hope you're coping OK with the "bottom effects" Lol.  Anyone had really good response on this treatment??