anyone getting avastin for hormone positive secondary cancer

hi , iam posting for my sister who at 40years old has just been diagnosed with secondary breast cancer to the bones and lung pleura and a recurrance in her reconstruction.She was told 3 weeks ago , her oncologist has sugested she starts weekly taxol but this doesn,t start until the 8/7/11. i am a nurse and have asked about adding avastin to this. He said it is only available to TNBC patients ??. we are going to the Marsden tommorrow for 2nd opinion . I was hoping that some of you ladies may have experience with avastin. Also how long did you have to wait from seeing oncologist to starting chemo? 3and a half weeks seems a long time ??? thanks alot ladies. having a difficult time right now xxx

I think that Finty on here has Avastin, but she is being treated privately. I have also heard of a person on another site getting funding for Avastin from the emergency drugs fund (as it’s not routinely funded by the NHS), but as far as I’m aware, other options have to be exhausted first (no doubt someone else will correct this if I’m wrong).
It sounds like your Sister’s Oncologist is doing all the normal things, and is attempting to get rid of/shrink her lung metastases with Taxol (which is the chemo commonly used for visceral mets). I would guess that he/she will be put her on endocrine therapy and bisphosphonates when the secondaries are under control.
It’s difficult not to panic when you or your loved one’s are given a secondary diagnosis, and want to throw everything at it, but a lot of treatment is a case of try it and see (because what works well for some doesn’t suit others). The other thing is that sometimes it’s sensible to keep your powder dry, and keep the big guns in reserve.
I wish your sister all the very best for the chemotherapy treatment.

Hi flo

Lemongrove is quite right - I had Avastin for a year funded by insurance. I am er and pr positive. I was diagnosed already at stage 4 with early bone mets, and had the Avastin alongside Tax for 3 cycles, and then continued the Avastin with zometa for the rest of the year. I had very good results from chemo and Avastin, my bone mets shrunk and as far as I know I have had no progression at all since diagnosis (although I get the results of a bone scan tomorrow so that could change - my CT scan was clear though, so I am hopeful the bone scan will be good too). Avastin is more commonly used at a later stage - but my oncologist believes it is more successful when used earlier on.

finty x

thank you ladies . i have been reading the forums looking for advice, information, help !, and notice that both finty and lemongrove have lots of good advice and support, thank you x do any of you know how much avastin costs to pay privately ? I have read lots on the american site and quite a few of them have had good results with taxol and avastin. I suppose i am quite disappointed at the moment as my sister had a lump in her reconstructed breast for 18 months and the breast and plastic surgeon kept saying it was fat necrosis!!!. Now turns out to be a 4cm tumor.Going to the marsden tommorrow, feel like we have been let down by curent hospital!!!. LOve and best wishes toyou all xxx

Hi flo - I’m afraid Avastin is very expensive. Mine cost nearly £8,000 a treatment plus all the usual hospital costs for bloods etc.

Good luck at the Marsden - I’m sure you’ll get better treatment there.

finty x

Hi Flo,

I have mets in three places lungs, liver and bones. I am lucky enough to have private medical care and was put on Taxol and Avastin in January. Initially it worked well and the tumour markers came down and the scans showed the lungs were clear. In May the treatment began to stall and the tumour markers went up or were stuck and so I was taken off that.

Avastin has not been approved by NICE and is very expensive about £21,000 for 6 cycles.

I had a friend who who was on an Avastin trial and for whom it worked really well and she showed as clear at the end of the treatment.

Hope all goes well at the Marsden.

Cleomie

thanks ladies, went to the marsden on monday and saw the proffesor. He was very nice.he thinks that taxol is the best treatment for the reoccurance and lung pluera. He said avastin had now been withdrawn by the FDA and he was no longer using it with his patients.he said they were trialing similar drugs in tablet form at the moment. for the bone mets he has suggested 4 weekly zometa.he wants my sister to have an mri of her hip as bone scan showing increased activity but ct scan not showing up.feel happier now that we have had 2nd opinion , now have to wait for chemo to start. How long do you normally wait. It will be over one month from secondary diagnosis. Scared !!!Love to all x

Did you know that there’s a news that talks about Avastin. In the news they have mentioned that a board of cancer specialists made a recommendation Wednesday on the drug Avastin. The panel determined that Avastin should not be approved by the Food and drug administration for the remedy for breast cancer. The drug is ineffective and has extreme side effects, the panel established. The FDA commissioner will make a final decision in July. I read this here: A panel recommends disapproving breast cancer drug