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Fulvestrant (with Venetoclax) - experiences and advice?

10 REPLIES 10
Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Thanks Carolyn

we had been chatting about our liver mets, she went for RFA procedure then haven’t heard anything. I don’t know how to PM. Hope you hear from her and she’s ok

x

Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Sorry damn predictive text. .meant to say Mo.not Monday! Xx
Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Just done a pm to Monday to see how she is . She does tend not to. Log on the site soUchida green days.
SML
Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Thanks, nicky08. I've decided to go with the Fulvestrant trial. I have a three week treatment gap (for the other stuff to get out of my system) - which feels a bit odd and makes me rather anxious. However, hopefully the trial will then get going. I'll then know if I'm on the 'just Fulvestrant' arm of the trial, or will also be having the other drug (which is as yet unproven for breast cancer). Thanks again. xxxx

Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Nicky,

Happy New Year to you. Have you heard from Mo? She was having RFA to liver few weeks before Christmas but hasn’t been in since.

Hope  it worked well for her 

xxx

Community Champion

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Hi SML

I have been on fulvestrant for nearly a year now, luckily my NHS trust decided to fund it themselves as it’s not available through NICE and it’s either individual trusts funding it or if you are suitable for a trial.

I find it very easy, if easy is ever a word to use for breast cancer treatments, and certainly far far easier to cope with than any of the chemos I’ve been on over the past few years. Yes, the actual injections can cause some local area irritation and sometimes some minor pain when administered but that’s often down to the nurse who gives it! I don’t really suffer from any of the usual side effects associated with being on a hormone treatment, such as hot flushes, but as I’m way passed my menopause now (brought on early due to chemo etc) that I hadn’t expected to. Overall it’s a very unintrusive treatment. However I do know (having gone down the trial route a year or so ago, which I ended up not being suitable for) if you are on a trial the extra drugs that are part of the trial could cause more side effects and of course there are more hospital visits, blood tests etc

Nicky x

SML
Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Thanks, everyone .... I really appreciate your responses xxx

 

Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Hi there

I was straight to Stage 4 in 2013 - breast, liver and bones.  Standard chemo, Zometa and Letrozole worked for three years. Then it mutated and the Letrozole stopped working.  I was put on a trial of Palbo, Taselisib and Fulvestrant as well as Zometa which I stayed on until September of this year when I elected to stop cancer drugs.  I was fed up being ill.  The Professor was horrified. However he persuaded me to stay on Fulvestrant as he said it was a very effective drug, didn’t harm the immune system and meant they could monitor me with blood tests each month. Strangely, the only major side effect is that the hot flushes have returned big time.  During the trial period, I didn’t have any. (Perhaps I just didn’t notice them amongst the e-coli infections, pneumonitis, osteonecrosis and all the other treats their treatment gave me).  I always ask for a copy of my blood results and my immune system (red and white cells, platelets etc) have recovered back to normal.  The tumour markers seem to be holding and the new oncologist thinks the Fulvestrant “leans on the tumours very effectively”.  Yes, it is, literally, a pain in the ass but compared with everything else, worth sticking to.

 

I wish you all the best. Don’t be frightened and don’t be brave.  If you feel like rubbish, tell everyone.

Take care and good luck

Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Hi SML,

I’ve been on Faslodex for 2 months now and have found it very easy; I’m so hoping it’s working for me.

 

Good luck

x

Member

Re: Fulvestrant (with Venetoclax) - experiences and advice?

Hi SML

 

I was only on Fulvestrant for 3 months as sadly it wasn't working for me. I don't recall any side effects from itt, it was really tolerable. Although from this site I realise that everyone's experiences of drugs are different.

The worst part for me were the injections themselves they can be quite sore as they are given in your bottom.

I am also on the McMillan Forum and there is a thread on Fulvestrant on there.

Good luck with your treatment  and your trial.

 

Vicky

SML
Member

Fulvestrant (with Venetoclax) - experiences and advice?

Hi everyone. I was diagnosed 'straight to stage 4' in September 2017, with secondaries in lymph glands and bones. I'm about to change treatment, after a year on letrozole and palbociclib .... everything was stable, but now one lymph gland has grown significantly. I've been offered participation in a trial that will provide Fulvestrant, coupled with Venetoclax (a leukemia drug that may have a beneficial effect on breast cancer) - half the trial participants just get Fulvestrant, half get both drugs.

 

I can't find any recent comments about Fulvestrant .... so was wondering if anyone has a perspective on the drug? I believe it hasn't been easily accessible in many places due to the cost - so, beyond the medical facts and figures, I'm struggling to get information about what it's like to actually take the treatment (in terms of tolerability, side effects, etc).

 

Thank you .... and lots of love to you all, as always xxx