I’ve been having treatment for BC for 10 years now (secondaries for six and a half), and my latest CT scan results yesterday show there’s been more progression - the tumours they’ve been tracking over the last 18 months have grown again (by about 1/2 cm in each direction over the last 12 weeks), and 2 new nodes have lit up. My organs are still clear, so there is some positive news, but my chest is filling up with the evil little buggers! So, I’m off the Aristacats trial and back to the drawing board. Again! They’re going to unblind the trial, as my options will depend on whether I got the placebo or the saracatinib. I have an appt. next Wed. to discuss the next step…
I know I was really lucky to get nearly 5 years out of Arimidex when the cancer first spread to my sternum, but I’ve gone through 3 treatments in the last 15 months with very little to show for it and I’m starting to worry about the fact that I’m exhausting my options. I know this is one of the biggest fears for those of us on this side of the boards and I know that many of you are in a far tougher place than I am, but I’m finding it hard to pick myself up from this news… No doubt getting the next treatment plan will help - we all know the drill!
The options which may be on the table are: Everolimus & Exemestane (4Ever UK trial), Irinotecan / Epirubilin (Beacon trial), or Vinorelbine. If anyone has any info. to share on any of these drugs, I’d be really grateful for your input.
Thanks, everyone! And I hope you’re all doing well and having a good day today.
Hi, I cant comment on any of the treatments being a relatively newbie on this forum. Just wanted to send you a big cyber hug and I hope they get the next treatment plan sorted out soon. I myself have just finished ec chemo, about to start letrozole. Its all such a worry but I guess we have to put our trust in our oncs.
Take care,
Mel xxx
Thanks for your reply, Mel. If only our oncs could tell which treatments will work for us, but I’m sure that will happen one day…
Have a great weekend. xx
Hi Angelfalls
I felt that I wanted to reply to you as you were thr first person to respond when I posted a query.I am very new to this and I am trying to find my way around.Like you I am scared waiting for my scan following treatment to see whether there is any change it is due in May I have had to wait 12 weeks following the sterio rads.My sternum bone feels very knobbly now but I am hoping that is to do with the rads.I wa also on Arimadex for 5 years and then 2012 secondaries in the sternum but this time TN which I don’t understand as it is still ER+2 HER-but am told because it is so low it is TN but I will be asking lots of questions when I go back in May.I would like to know if there are any other ladies with a low ER+ that are TN.
I was on PHARMORUBICIN/EPIRUBICIN the one that makes your P.red I don.t know if that is the same or just a missed spelling.I am not sure how to say things but I expect you understand as I see you are an old hand at this.I wish you all the luck in the world and hope every thing goes welll at your next meeting I shall be anxiously waiting for your next post
Love Linda G.
Hi Angelfalls sorry to hear you have progression,I had the same news last December plus spread to liver.It hits hard when I had been stable for 2years on letrozole.I am now on everolimus/exestemane and have taken it for 3months.I had a scan last week and get results next Tuesday,so don’t yet know how effective it has been.There is a thread running on the e/e combo if you look it up in secs medical treatments.It does have se’s…sore mouth and mouth ulcers,skin rashes,fatigue,nausea.I have found it hard going at times but depending on scan results will persevere as I don’t have too many other options and it has also had good results.
Sorry can’t help you with the other options, but hope you get a plan soon as we all know things seem better when we know what the treatment is.
L xx
Just wanted to wish everyone all the best with their upcoming treatments or current treatments. I had 3 and a half years with Arimidex and over 4 years with Capecitabine. It is a scary time when a treatment fails. We all seem to feel better when we have the next plan don’t we? Thinking of you all…x
Thanks, everyone! I’m feeling a lot better already and know that once I’m on to the next treatment, I’ll be OK. Until the next scan…!!! It’s just the fact that 3 treatments have failed in such quick succession which has got me so jumpy.
Anyway, I’ve now found out that I was on the placebo (plus Exemestane), which means that I should be able to go on to the Exemestane & Everolimus combo next, but I’ll find out more on Wednesday. I’ll keep you posted, but thank you all again, especially when I know that my fears pale into insignificance compared to what so many others are dealing with at the moment. Best of luck to all of us! xxx
Angelfalls, very sorry to read this.
I was diagosed with BC in November 2009, had a mastectomy and lymph node clearance in January 2010, and shortly after this (within a few weeks), it was discovered that I had secondary BC (three skull mets). Because I only had three mets the Professor in charge of my treatment decided to try curative treatment, and I had 6 FEC, followed by conventional radiotherapy to my mastectomy site and neck, and Cyberknife stereotactic RT for my skull mets. I was then put on Letrozole as my cancer was very oestrogen receptive. Anyway everything seemed dandy and it appeared I was NED until November 2011, when I developed severe neck pain, and it was discovered I had several mets in my spine. My Oncologist then tried different types of endocrine therapy (Exemestane and Fulvestrant), but I still had further progression, so my Oncologist did a biopsy of a node in my chest, to find out if my cancer had changed it’s receptor, and sure enough it had. It had gone from being highly oestrogen receptive, to highly Her2 receptive - so I was then put on Herceptin (have now changed to Lapatanib). Shortly after this I saw another Professor (while mine was on holiday), and he said it is incredibly common for cancer to change it’s receptor (about 33% change receptor status).
Anyway the reason for this long post is that I wonder if your cancer could have changed it’s receptor and whether it would be worthwhile getting a biopsy of the nodes in your chest? Of course it might just be that your cancer hss become resistant to the treatment you were on, in which case Everolimus could help, but if your cancer has changed it’s receptor to Her2, then you would need Herceptin.
Just an idea so hope you don’t mind me mentioning it.
Hi Angelfalls
Sending you a cyber hug as well, I think it is such a scary time when treatments fail when all of us secondary ladies rely on them to keep us going. After recent progression of bone mets and now liver mets I’m on Capecitabine, which I assume you may have had already? My onc has said to me how good Epirubilin is as a newer chemo drug, it’s had great results in trials, and also that the e/e combo is one of the first breakthrough treatments in years. I hope you have a good appointment next week and get onto a new treatment plan soon. I would also back up what LG has said on receptor status. To be honest I was in the dark about this until she brought it up many months ago but have just had a liver biopsy done (not the nicest of experiences!) to determine if my receptor status has changed for either future treatments or the inclusion of Herceptin if I’m now positive for that - having previously been HER- and 8/8 ER+ and PR+.
Nicky x
ps Thank you LG for your knowledge about the receptor status issue, my onc still insists it’s only 20% that change, but even then that’s 20% who may be getting the wrong treament.
Thanks, LG and Nicky. Having read about your experiences in the past, I’ve already asked about checking receptor status and hope to hear about that during my appt. on Wednesday (although my onc’s registrar quoted stats nearer 10%, so if you know what research your onc has come across to suggest 1/3 change status, I’d be really grateful if you could let me know, LG, so that I can point them in the right direction!).
The drawback my onc mentioned is that a biopsy wouldn’t necessarily give the whole picture (given that the histology / pathology of a tumour isn’t uniform), so she’s concerned that the biopsy may appear to be triple neg, meaning they would withdraw endocrine therapies, when in fact they may continue to benefit me…
Capecitabine was the first tx I tried 15 months ago, Nicky, but unfortunately, it didn’t work for me at all. I hope you’ll get great results from it for a long time to come.
Hi Angelfalls. Not sure where the two Profs at my Hospital got there stats from, but I’m providing a link below to a study that showed that 33.4% of cancers change receptor (note that this is a continuous process and cancers that change receptor can change again). You could print this off and show it to your Onc.
jco.ascopubs.org/content/early/2012/06/18/JCO.2011.37.2482.abstract
I personally find it disgusting that some Oncologists say this “only” applies to 20% of patients (to quote Nicky), or 10% (to quote Angelfalls). Either way it means quite a large number of patients may be missing out on the treatment they require/could save their life, and may die as a result. This could also mean that many are enduring the side effects of treatments unnecessarily (because the treatment they have been prescribed is inappropriate) . For goodnesss sake, what has happened to the idea of evidence based medicine ? Doctors shouldn’t be prescribing highly toxic chemicals, and then keeping there fingers crossed.
Angelfalls, I’m a bit thick so could you explain what you mean when you say the histology/pathology of the tumour isn’t uniform? A biopsy would show the whole picture of what your cancer is receptive to. That could be your cancer is Oestrogen receptive, Progesterone receptive, Her2 receptive , Triple positive or Triple negative.
I wouldn’t worry that biopsy will show you are triple negative, and then you will lose your endocrine therapy (it might be that you’re Onc is suggesting that to put you off). If you read the study I mentioned above, it appears that cancer tends to change it’s receptor a number of times before becoming triple negative, so it’s unlikely your cancer would have gone straight from ER+ to triple negative (unless it has been changing it’s receptor a number of times over an extended period).
Anyway, it’s entirely your decision. Just thought I would mention it, because if your cancer is now responding to a different stimulus, knowing about it might help you.
Hi Angelfalls and Lemongrove.
I think both of you are hearing and reporting things which are correct but which can be interpreted in different ways. My understanding is that both primary and secondary tumours can be heterogeneous ie display different characteristics in different parts of the tumour…and this is definately more so for secondary tumours where tumours in one area may respond to treatment whilst a tumour grows in another area or organ…because of differences in expression of markers at the tumour surface.
Ther have been a no of studies looking at receptor changes in secondary cancers and they don’t all give the same results…the figures that Lemongrove quotes are towards the higher end of change…other studies give lower rates of change. Even if the rates of change are as high as the paper Lemongrove quotes that may equate to a much lower rate of significant changes in treatement …suppose a tumour changes from ER+ to ER-ve but patient is already on chemo it wouldnt lead to a change in treatment necessarily…infact the change from HERneg to HER positive as in Lemongroves case is probably the most significant change.
The link Lemongrove gives quotes a no of other papers at the bottom of the page, where the original article has been quoted. One of these is “When to order a biopsy to characterise metastatic relapse…” Probably worth a read Angelfalls ! If nothing else it demonstrates how different pieces of research can result in different results. Pamx
Herbgarden I take your point, it is always possible to find different conclusions, and the whole point of science is that something is true until proven otherwise. But I disagree that there is no point in a biopsy because cancers may be heterogeneous, and a biopsy may not reveal this.
In my case a biopsy demonstrated that my cancer had gone from being ER+ to Her2+, and that enabled my Oncologist to adapt my treatment. Without this knowledge he would have been scrabbling in the dark. It may well be that some metastases are stimulated by one thing and another stimulated by something else (although I’m not familiar with that idea), but if a biopsy reveals that a cancer is for example stongly Her2 receptive, and mildly oestrogen receptive, that would not preclude endocrine therapy, it would merely indicate that Herceptin is indicated.
The study I mentioned concludes that there is mounting evidence, that a biopsy should be performed whenever treatment fails and progression ensues, and I tend to agree. I’m not quite sure why anyone would not want to know if their cancer had changed it’s receptor, as that knowledge could potentially save or prolong their life.
Thanks, LG and Herbgarden! This is extremely useful information and exactly what I need, so that I can go into my appt. better informed and armed with the facts in case my onc. says they’re not going to biopsy…
I’ll let you know how I get on!
Hello again. I hope you’re all doing well with your current treatments and feeling OK today. Just thought I’d give you a quick update!
I’m a step closer to the e/e combo on a trial, but first have to go through a whole new set of tests and scans - bone scan tomorrow, CT scan next Thursday… I’m also switching from Zometa to Denosumab, so have been to the dentist ready for my first jab on Thursday. Busy, busy!
I can’t have any more rads to the area, not even Cyberknife, as it’s been treated to full dose twice already, so the risk of not healing and even necrosis is too high.
And they aren’t going to biopsy because my cancer isn’t behaving like a HER-2+ cancer (disease mainly confined to bone, organs still clear 10 years on…). From the research I’ve read, this does seem to make sense to me, but if any of that changes, I will definitely push for a biopsy.
Thanks again for your support. xx
hi angelfalls, just read your post, just like to say iam starting the brecon trial in a few weeks, i have spread to lungs, chest wall skin and lymph node plus her2 positive, hope you are feeling more positive xx
Hello Lolly! Good to hear from you, though I’m really sorry to hear you’re dealing with more progression. I hope the brecon trial will work as well for you as Taxol did, or even better. I’m keeping everything crossed for you!
I still haven’t started treatment, but go to clinic for bloods tomorrow, then yet another CT scan on Thursday - much more of this and I’ll be glowing in the dark!!! I’m hoping to start the e/e combination next week, as soon as all the results are finally in… I’m feeling more positive now, though, and hoping for good things from this treatment…
Keep me posted. Look after yourself. xx
Hi angel falls , long time no speak , I hope you are ok, do they mean epirubicen or halaven which has a similar name to epi I think eribulin ?
Louise
Hello, Louise!
I’m on Exemestane & Everolimus and have been taking this combo for four weeks now. The big lump in my collar bone has visibly shrunk in that time, so I’m hopeful it’s working for me and that I may even get a bit of mileage from this one. Scans in August, so a while to go yet before I find out for sure…
How are you doing? What tx are you on now? Hope you’re ok and it’s working well for you. Look after yourself.