I have been to the onc this morning and been told that the Tamoxifen which I have been taking for two months doesn’t appear to be working despite my being highly ER+ and that he feels that I should go straight onto EC chemo (6 x 3 weekly)
Needless to say I am gutted about this - apparently my tumour markers have gone from 80 to 120 in the space of a month which he says isn’t inordinately high but is a big jump - and I asked him if I could be switched to a different hormonal. He said that because I was still pre-menopausal (I knew I should have been offered that Zoladex) it would be a time-wasting exercise to shut down my cycle and then wait to see if another hormonal worked and he wanted to crack straight on with the chemo. I am also confirmed as of today as being HR- so no Herceptin for me
So there it is, I’m starting chemo two weeks today - but just wondered how many other ‘bone mets only’ ladies there are here who have had IV chemo because it seems most people are having hormonal treatment and I’m now feeling like a bit of an oddball
Sorry to hear that the hormonals don’t seem to be working. Whilst I don’t have bone mets, I am highly ER+ and Her2-. My first chemo for my liver mets was EC X 6, which worked well. Then we tried Tamoxifen for 6 months at which point a ct scan showed progression, so it was on to weekly Taxol. After this we tried Femara but after only 11 weeks a scan showed progression again. (My onc didn’t think the Femara would work after Tamoxifen failed and says he is unlikely to try another hormonal - we’ll see about that though…) What I am saying here is, even in ER/PR+ patients I have been led to believe that there is only about a 30% chance of responding to hormonals. The one thing I would add, though, is that hormonals can take a couple of months to kick in so to my mind, it is possible that the Tamoxifen has not had much of a chance to work yet.
I would guess your onc doesn’t want to take the chance of considerable progression whilst experimenting with other hormonals but would rather hit it hard early on.
Being Her2- is usually a good thing as Her2+ tumours tend to be more aggressive though I know I often find myself wishing I could add Herceptin to the equation.
I’m soo sorry that the onc thinks the tamoxifen is not working, or perhaps not working quickly enough. Have you had any scans that have shown this or is he just going on tumour markers? Not sure which tests my onc goes by, but am due a repeat ct scan next week and then results week later.
Also keep meaning to ask you if you’ve had surgery?
Don’t know if chemo works well on bone mets, but be interesting to see what this thread of discussion brings.
Really sorry about this, but not quite sure what the score is. My onc doesn’t really take too much notice of tumor markers, but obviously if you know they are up you now want something to be done, understandably. I’m assuming you are ER+ (oestrogen)and PR+(progesterone) methinks. and that you are HER2-. I think if you are even a bit concerned about this turn of events, it might be worthwhile to consider a second opinion from the Marsden.
Take care mate - you know you can contact me anytime
Thanks Jenny, Rachel and Celeste - I really don’t know what to think. The only thing he said is that if today’s blood test shows that the markers have come right down again he might consider it a blip and would then carry on with the Tamoxifen - but my mind is pretty set now on having this chemo as I want something to hard-hitting to really get to work on things.
Jenny, the onc said almost word for word what you said about Herceptin and like you I don’t know whether to be pleased about it or not.
I am um-ing and ah-ing about a second opinion, will have a think about this. I just feel that if I’d had the Zoladex injections from the start I would be menopausal by now and would have then had the option of another hormonal - although I suppose the upside is that he thinks that it needs a ‘quick fix’ rather than waiting for another few months for tablets to work.
Rachel, I had a bone scan a couple of weeks ago which just shows the mets are exactly where they thought they were when I had my CT scan at Xmas - ie, spine, hips, ribs - plus a couple of spots on my shoulders so no change there. I’ve had no surgery as the bc was picked up at the same time as the bone mets so surgery wasn’t an option.
Sorry you’ve had this news. When my tumour markers jumped up after being on Tamoxifen for a year, my onc told me next stage of treatment was to switch off ovaries and start on Aromatase Inhibitor. I’m not sure if other bloods eg liver function showed change as well. At same time found out I carry BRCA2 mutation and was higher risk ovarian cancer, so she arranged to have my ovaries removed instead. At this time as far as we were aware I had bone mets only. When ovaries removed found bc in them and peretinium, but onc couldn’t tell if this was a recent spread or had been there all the time as a ct/mri scan doesn’t show this spread (its too small). Onc started me on Femara (year ago), no chemo, tumour markers have steadily come down, everything stable so far.
I was told hormonals take approx 3 months to work as Jennywren has mentiioned maybe your onc wants to hit it hard early on. Maybe because I had a good initial response to Tamoxifen she was quite happy to try Femara.
Actually re-reading your post, Im not sure if this is any help to you or not.
Oh I’m sorry to hear Tamoxifen’s not working Lesley…I think if you have chemo now it will hopefully get those markers right down and after chemo you can then have one of the Aromatase hormonals…(with Zoladex)
The only thing I did wonder as an alternative was why not try Tamoxifen and Zoldaex? I had Prostap (same as Zoladex) and Tamoxifen together so I had twice the hit. Take Care…(PM me anytime)…Belinda…x
Thanks Lynni and Belinda - it does help if only to make me want to ask even more why I wasn’t given Zoladex from the outset as then I could have gone straight onto another hormonal. I also still don’t quite understand why I can’t have Zoladex now in conjunction with the chemo - or perhaps you can’t do this, not sure - because when I’ve finished the chemo I would like the option of being able to take other hormonals then.
Belinda, I think he feels that if he carries on with the Tamoxifen in conjunction with Zoladex it will still take a while to start having an effect and so on the other hand I’m pleased that he seems to be wanting to jump on this rise very quickly and do something drastic, so there’s two ways of looking at it I suppose.
Thank you Cathy - I’m going to ask again why I can’t have zoladex anyway as at least that would definitely put me into the menopause by the end of the chemo.
Does anyone know how well chemo works on bone mets generally - I understood it wasn’t really a normal course of treatment
I don’t know the answers to this one. My bone mets were dx in Dec 2002 after having problems with lymph node progression in chest, collarbone and neck areas. During 2003 because of the combination of both of those factors I was put on chemo - but they were measuring the response by the visible, palpable lymph nodes and it wasn’t working. By then they told me I had exhausted all the chemos available and it was at that point they found from previous tissue taken from 1999 that I was her2+++. It was that which I responded to so rapidly and has kept everything under control since then. So my experience with chemo didn’t appear to work.
I don’t have bone mets but I have ER+ mets in my liver. I am quite surprised at your oncs plans as my understanding is that if your disease is not life threatening they will try hormonals first as the impact on quality of life is less.
I was DX with mets in September and am being treated with AIs and Zoladex.
I had FEC prior to discovering my mets and was having this prior to surgery on the lump in my breast. There was no change in my breast lump after 4 cycles of FEC, and no change in the tumour in my liver, they had to biopsy it to confirm it was BC related. A comment was made at the time that hormone treatment was discussed that ER+ cancer does not respond that well to chemo.
I asked how long it would be before we knew if it was working and was told 6 months. There is a phenomenon with Tamoxifen called flare where initially the symptoms get worse, it is in fact a good sign and it might be what has happened in your case, 2 months is not long to see if things are working. My understanding is that 70% of ER+ BC responds to hormonals and more than one in most cases. I would be inclined to get a second opinion.
As a further thought depending on how old you are chemo may send you into the menopause, which would switch off your ovaries either temporarily or permanently. This will have an impact on hormone levels, my periods stopped during chemo however I am still being given Zoladex despite this. My understanding is that Zoladex is reversible so as soon as you stop taking it your ovaries start up again.
Hi Fiona, I too have heard of tumour flare and Tamoxifen.
Lesley I think your chemo may well put you into the menopause although I know others who like Cathy have been on Zoldex throughout. I was taken off my monthly injections at the start of chemo and I’ve not had a period, I did have a couple of odd oestrogen surges but no period. I have also read, as mentioned here, that chemo is not always so effective for bone mets but I now have some low and stable tumour markers with Xeloda so for me chemo has been a good treatment. I’ve been on Xeloda for nearly a year now. My bc is slow growing so it’s exactly the type that’s not supposed to respond that well to chemo. My Onc thinks chemo will continue to work well and as I’ve had Tamoxifen, Arimidex and Aromasin he thinks chemo will be the more effective treatment now.
Good Luck Lesley…xxx…oh a PS…you could always request some hormonal readings throughout chemo to see if it’s likely you’ll have a period…I’ve had 2 blood tests and have a form ready if I’d like to request another at any time. (The test is FSH and LH Oestradiol) There’s some info on the tests at all the w’s (dot) labtestsonline (dot) org…written this way in case the address is removed by the moderator…x
I really hope it’s tumour flare!! The onc said he’ll phone me in a couple of days with today’s blood test results so we’ll see what the markers are saying - knowing my luck they’ll have gone up again
It’s such a stupid disease - I went in this morning feeling so well, better than I had for ages, no aches and pains, thinking he’d say what fantastic progress I was making and I was told quite the reverse
I’ve just put my experiences on the mastectomy with secondaries thread and hope you can pick out bits that may be relevant to your query. Inadvertantly the chemo I had to shrink my tumour seemed to shrink the bone mets as well. And I’m on hormone therapy and was always going to be after the chemo and surgery. Let me know if there’s any other info I can help with.
Hi Lesley - I had FEC and docetaxol for my mets, but I had changed from ER+ PR+ when I had DCIS to ER- PR- when my recurrence and bone met was diagnosed. I’m not going to lie to you, it was hellish, for some it isn’t - just depends. For me it worked, or at least 18 months on I’m ok.
I had 4 different chemos, only the first of which worked. My onc tried me on Tamoxifen then but I got progression. After the fourth chemo she said my body couldn’t handle another chemo. So I asked her to put me on Femara. She said she didn’t see the point as the Tamoxifen hadn’t worked but I insisted. Have had 2 blood tests since then, wbc and rbc had improved a lot and the liver function test showed that my liver has stabilised. They didn’t expect to see any results yet as normally it takes more than 3 months to show if hormones work or not. Like you I wanted to hit the cancer hard with whatever I could but in the end it looks as if the sneaky attack is doing more. My liver function had been going down during the last 2 chemos.
Thanks everyone - it really seems as though it’s very much different strokes for different folks. I’m trying not to worry about having the chemo and hope that I will cope well with it - at the same time I want to know that I have all the remaining hormonal options open to me when I’ve finished that. And of course I hope and pray that it will reduce not only my primary but also my bone mets
Peggy, it’s really interesting what you say about Femara - but of course my onc won’t give me that for the time being as I’m still officially pre-menopausal. It’s great that it’s working so well on your liver!!
I’m going to be having a very long chat with my bcn tomorrow
Hi Lesley
I did write a long reply to this thread but it didn’t record so, now that I’ve stopped fuming at this new site, I will add my experience (again!)
I had a local recurrence last year and then bone mets were found on a CT and bone scan. The biopsy of the lump showed I was still very ER and PR +ve so the original thought was to have hormonals only. I was pre menopausal at the time and had been on tamoxifen since 2004 with my primary dx. This had stopped working for me, as it can do, having said that it may never have worked for all I know as I also have a very slow growing type of BC. We all (hubby and onc) discussed the options and I decided to go for chemo 1st to give everything a good blast especially as my BC presumably spread through my blood system as I had no node involvement originally. Hormonals would have done the same job but slower. You don’t have Zoladex during chemo but start it a few weeks after. I had a blood test that showed I was perimenopausal or menopausal but the guide is you should not have had a period for at least 1 year and nearer 2 before you can be classed as post -men. I went onto Zoladex and A I’s after chemo and then had my ovaries ablated in November (last year). A I’s and Tam work in totally different ways so I’m surprised your onc said they wouldn’t be effective. I had good results during chemo - lump shrunk by at least 70-80% and bones showed signs of healing. I am (and was during chemo as well) on Bisphos which presumably are helping as well.
I also know of other ladies who have had chemo for bone mets only and have had really good results and have had hormonals as a followup/continuation treatment.
Don’t know if this helps but please get in touch if you have any questions.
I will now try to post this one and hope it doesn’t get lost.
Good Luck and hope your questions were answered today.
Nicky x
Thank you Nicky - that’s all really, really helpful and has helped put my mind at rest that it’s not just me who doesn’t respond well to Tamoxifen!!
I had a very long chat with my bcn this afternoon, she was brilliant actually, really supportive and encouraging and more or less explained what you’ve just said about having the Zoladex and AI’s after chemo. So the upshot is that I’m feeling a lot happier about things today and not that I’m exactly looking forward to starting chemo (I’m not that odd!) I really want to get started now to get things moving in a downwards direction.
It’s really annoying when long posts get lost, it’s happened to me more than once, grr!
