I have just started taking oestrogen tablets, and wondered if anyone else out there is on the same treatment?
I have bone mets to my hip, ribs, femur and skull, and have not responded well to either tamoxifen or letrazole (femera) in the past. I have recently completed a course of 8 carboplatin/gemcitabine, which has produced very good results, with no progression since early last summer, so I am feeling good right now, and hoping that the oestrogen will work well for me too.
J x
I’m sorry but this doesn’t make sense to me - although someone else might be able to explain it.
If you have been on Tamoxifen and Letrozole, it suggests that your cancer is oestrogen receptive. Therefore I cannot understand why you would be given oestrogen - which would stimulate the cancer. Are you sure you haven’t been given progesterone ?. Before Tamoxifen and Letrozole were discovered, doctors sometimes prescribed progesterone, to try and counter oestrogen.
Yes, definitely oestrogen (diethylstilbestrol), and yes, I am oestrogen positive. I gather that this is an unusual treatment, but it seems as though for the 25-30% of people for whom it works, it works very well - I am hoping that I will fall into that category. Apparently it can also sensitise the cancer cells so that whereas they were previously unresponsive to conventional hormone treatment like tamoxifen and letrazole, they switch and so these drugs can then be used in the future. (My lay person’s interpretation - would be pleased to hear from anyone with better knowledge!)
It does sound very strange at first I know - my reaction was identical to yours Lemongrove - but there is info out there about this approach. I would love to hear from anyone else who has tried it, especially if it has worked for them.
Jx
Hi Ladies
It does seem contradictory doesn’t it, however I was reading a thread about it on breastcancer.org this weekend and a few of the americans had been given it for the reason geewhiz explained to stimulate cells that have stopped responding to oestrogen withdrawal, I think it is only a short term treatment. I tried to find the thread to give a link, but can’t find it now, but I think somebody who had had all the hormones fail then had been on chemo, then wanted to retry hormones was being given it briefly…I think that was the idea. and others were replying saying that they had experienced it too.
Good Luck Geewhiz, I will be interested to hear how you get on, I am one of those that is 100% oestrogen positive, but don’t seem to be responding to any hormone treatments :o(
Thanks Nicky, that’s really interesting. I’ll go and have a look at the site and see if I can find anything. Are you still on hormone treatment at the moment?
Jx
Hi Geewhiz
I recommend looking at the other site anyway, it’s quite good, there are a couple of people I recognise from on here too. I think it was in a thread about hormone treatments. I tried to flick through but couldn’t see it again, it is there somewhere, I don’t think it’s called oestrogen (or estrogen in the US!)in the title just hormones. Or post a question and somebody will answer you and post a link to where it is. That’s what happened to me. In answer to you question I am now on faslodex (after Tamoxifen, Aromasin and Femara have all failed) nobody on here replied with experience of faslodex, it is an injection not a tablet, so I posted on the american site and had some replies and links to where it was mentioned in other threads.
Good Luck and hope you get some answers xx
Hi Nicky
Just saw your comment about Faslodex and wanted to say that a friend of mine’s Mum had secondaries and was on Faslodex and lived to a grand old age - eventually dying from causes unrelated to BC. So I’m hoping that you get a similar response, especially if the oestrogen ‘drugs’ haven’t worked - Good Luck. It’s also interesting to hear what you have said, Geewhiz. I’d not heard about this other approach to ER+ BC but will also be checking up on the site.
Nicky
Hi Geewhiz I can’t find the original thread that I read, but have found this thread that mentions using oestrogen and a bit of discussion about it. You will have to scroll down a bit before it is mentioned.
community.breastcancer.org/forum/8/topic/763403?page=1#idx_21
The thread also links to another article (although this is 18 months old, not too recent!)of the study undertaken.
businessweek.com/lifestyle/content/healthday/630103.html
Take care Nicola xx
To be honest, I’m still confused about why you have been given oestrogen. Yes I have heard of oestrogen being used when there is a concern that cancer might be changing it’s receptor, but not when endocrine therapy has never worked.
As I understand it, the idea that endocrine therapy fails is not quite right. Rather, the problem is that cancer cells which have survived endocrine therapy, are those that have learned to exist without oestrogen. To try an overcome this, some doctors advocate giving oestrogen at various intervals. The theory as I understand it is that this gives the cancer cells a little fix of oestrogen every now and again, and keeps them hooked (which means that endocrine therapy has a longer lifespan). I’m no expert, but if your cancer has never responded to endocrine therapy, it sounds as if your cancer doesn’t require oestrogen.
Your doctor must know what they are doing, so please don’t take any notice of me - but if it was me, I would ask for a biopsy, to check if the receptors have changed.
Geewhizz, I’m wondering how you are getting on with oestrogen therapy? Would be interesting to know.
Since posting I have been doing a little research, and it seems there is recent evidence that the sudden addition of high dose oestrogen can trigger cancer cells to die (apoptosis), when they have been deprived of oestrogen for quite a while, and have become endocrine resistant (see link below). Apparently (so the theory goes), the longer cancer cells have been deprived of oestrogen the more susceptible they are to apoptosis, when oestrogen is reintroduced.
Hi Lemongrove, good to hear from you.
Thanks for the link to the paper: that seems to tie in with my onc’s decision when prescribing the diethylstilbestrol for me.
I am no longer on this treatment now though - things all went a bit pear shaped last spring, starting probably 3-4 months after I started that particular course of treatment. Two of my first bone met areas identified in 2010 were the right femur and right hip, and my mobility was becoming more and more compromised with pain in the hip and my leg feeling that it would give way. Since then I have had a pin inserted though the femur from the hip to just above the knee, 8 rounds of Abraxane/Xeloda (Capecitabine), and am now on continuous Xeloda plus Zometa.
Is diesthlystilbestrol a treatment being considered for you? It still seems rare in my experience.
Best wishes,
Jx