Hello everyone, I’m new to this site and I’d like to say how glad I’ve found you!
My Mum was diagnosed with secondary breast cancer out of the blue just over six months ago, and was told that she had too many tumors in both lungs, the left supraclavicular and a few others here and there for either surgery or radiotherapy.
She was recruited into a new trial lasting 24 weeks: weekly Taxol, Avastin on alternate weeks and a trial drug every single week with no breaks. She’s coming to the end of the treatment, and she’s supposed to have a CT scan next week. So far the cancer has responded really well, thank God.
I was surprised to read that some of you are on maintenance Avastin - this was not offered as an option to Mum. There’s an outside possibility that the trial drug will continue as for various reasons they were unable to administer the drug for most of the trial and I suppose they want their money’s worth (it’s a commercial trial).
At week 16 our oncologist, who is brilliant, suggested that Mum go on Xeloda when she finished after having a month’s break - he insisted on only a month because he wanted to adopt ‘an aggressive approach since you’re doing so well’. Now though, for no apparent reason, he says there’s no point taking the Xeloda until the cancer actively starts growing again. I’m confused, and can’t help but feel because the trial is almost over that they’re just not that interested in Mum anymore, especially as they’ve not offered her the chance to continue with her current treatment.
If I’m honest I’m also scared about what comes next. At least at the moment I know we’re doing something - I really don’t like the idea of just sitting waiting for the cancer to start again. God I hate this disease so much.
Welcome to the BCC forums, I am sure the other users will be along shortly with valuable support and personal experiences. Both you and your Mum are welcome to call our confidential helpline for further support and information from our team of specialist nurses and others’ who have had experiences of breast cancer on 0808 800 6000. The line is open Monday -Friday 9am-5pm and Saturday 9am-2pm.
Hello Lemouton - great to hear your mum is doing well on the trial. I am one of the people on maintenance avastin, having had six cycles of taxotere/avastin. I have been told I will remain on maintenance avastin “until things progress”, which I find a little frustrating at times because I would like to be doing something more. In particular, I wonder about adding anti hormonals into the mix, but because, even while on maintenance avastin, I am still part of the trial, they can’t mess around with the drugs.
I would say, though, that the oncologists approach of waiting for something to happen before giving xeloda seems to be consistent with best practice. Although widely acknowledged to be less toxic than some of the other chemos, it still is a strong drug and my feeling would be why weaken your mum with this when it isn’t necessary? I don’t think there is any evidence that shows that giving xeloda before evidence of progression is any more effective in the long run and, if she is being monitored closely (which I suspect she will be, having been in the trial), she will be able to start on it as soon as she needs to. In addition, it’s possible that if she has a good run without progression there may be other treatments that come out of the pipeline that could be even more effective.
Out of interest, it would be useful to know the name of the trial drug your mum was on, and where she is being treated.
i think maybe you shpuld just ask the onc why he has changed his mind…either approach is reasonable and actually it probably makes more sense to wait until something has happpened before using up the option of xeloda. Put it this way - with secondary cancer you only have so many options and it is important NOT to use them before you really need them. It seems that he has confused you by changing his mind and maybe you just need to ask him why? I am sure he has a valid reason that he can share with you…
Thank you everybody for your comments, they managed to put my mind at rest.
We asked the oncologist on Monday, and although he admitted changing his mind he didn’t really give an idea why he had done so. Anyway, he said that he didn’t like running chemo back to back and that it was unnecessary toxicity at this point as so far the tumours seem to be under control. I suppose I should add that Mum was admitted twice during her treatment due to various infections, and each time it looked like she wasn’t coming home, so I’m sure that also played a part.
Deirdre, my Mum’s at Charing Cross, and it’s a phase II trial for a drug that is still identified by numbers. It’s only used as a first-line treatment and the eligibilty rules are very strict, no previous chemo etc (unless for primary). They’re not continuing with either the Avastin or the trial drug now that the 24 weeks are over, and we’re waiting for the results of the latest CT scan, so fingers crossed!