Treatment info sought from secondary peeps please

Hi everyone - sorry that this is a long moan. Have not posted for a few weeks, as I recently had some bad news about C, and decided to go on holiday to switch off for a while (decided, while I can, to splash out on a cruise through Scandinavia to Russia, which was wonderful). Anyway, I’m now back and need to decide how to proceed treatment wise, and could do with some info/advice from those who have walked the same road.
The situation is that although I was told in October 2011 that scans showed NED, it seems the Docs suspected spread to the spine. This suspicion increased over Christmas when I developed excruciating pain in the neck and lower skull that layed me out for months. Anyway after several scans it appears I not only have progression to the spine (C2 and T12), but also have mediastinal lymphadenopathy , and a 9mm nodule in the left lung (lower lobe). The Prof has taken me off Letrozole Femera, and put me on Exemestane. He has started tumour marker tests, and arranged for me to have a CT next week to try and see if the Exemestane is working. Failing that it looks like I will have chemo (although as yet I don’t know which one). The Prof has said that if the progression can be stabilised and no other mets appear in the lung, he will refer me for Cyberknife for the lung met - which I’m very pleased about as when I had it for my skull mets it completely destroyed them, and they didn’t come back (touch wood, as yet).
I guess the thing that bothers me, and the reason I’m posting, is that the armoury is now running low. I’ve already had FEC, Letrozole, and Cyberknife, and I’m just wondering if the Exemestane doesn’t work, what’s left? I would be very grateful to read about the experience of those in a similar position, and/or, about the experience of those who have had Exemestane. I would also be grateful , for info about the types of chemo I might expect, how good it is, and what I might expect SE wise.
I have asked the Prof to do a biopsy of the lung met, as I’m worried the C may have changed it’s receptor, but he is reluctant. Has anyone asked for and got a biopsy of their secondaries?
Apologies again for the long moan.

Hi LG,

Glad you are able to have a holiday, but sorry to hear the progression . Was wondering where you were.

I’m not too sure about Exemestane, so can’t advise you on that. However, I can give you a list of chemo I have had and is having and have heard about (apart from FEC). So, here we go.

Paclitaxel (Taxol), there are also quite a few in the same family, tax being one, there’s also another starting with d, can’t remember the full name, sorry.

Xelodax (Capecitabine), this is a tablet chemo

Carboplatin / Gemcitabine (Carbo / Gem). Currently on this one, quite tough on the blood.

Vinorelbine, was going to have this one, but my onc changed his plan at the last min

Eribulin, onc mentioned this as well, but decided against this.

There is also a new drug for bone mets (thus inc. spine), denosumab injection. You may want to ask about it as well. I was only recently switched to this drug (replaced IV Zometa) because I had quite a bit of bone mets progression.

Sorry don’t know anything about lung mets, but hope cyperknife sort it out. Hope your pain is under control and you get on with some treatment asap. Waiting and worrying is awful.

Let us know how you get on. Love and hugs.

M xxx

Hi LG,

Sorry to hear about your progression. I too was recently told my cancer had progressed - in bones, lung & also now liver :frowning: I’ve already had quite a few hormone therapies & chemos & they are still offering me more, so don’t think you are running out of options yet! I have tried the following:-


I am currently coming to the end of a 3 week chemo break & then I will start on Eribulin, & hopefully, fingers crossed this might stabilise things for a while.

When I had my thoracospacy & pleurodesis back in Feb, I asked for some samples of the pleura to be taken for biopsy, as like you, I was concerned that my hormone receptor status might have changed. It turned out it had remained the same, but at least I could now stop worrying about that!

I hope you get some answers to your questions LG & so glad you were able to get away on holiday for a while.

Dugsy x

Hi LG and sorry to hear about the progression.
I have liver, lung, bone (mostly spine / hip) and axilla mets from the start last June and have just been diagnosed with a small volume of brain mets (Stupid cancer - the gift that keeps on giving…)
I had FEC x3 (progression in liver)
Taxotere x3 (mixed stable and liver progression)
Tamoxifen x 5 months (stable bones, nothing to see in lung, shrinkage in axilla and progression in liver)
Now onto Capecitabine and just completed first cycle. Will have scans after cycle 3 and repeat brain MRI
I haven’t had any biopsies since it was all diagnosed at the same time as the primary.
You did well with cyberK so hope that is a good option for the lung.
The other thing to maybe ask about is a trial Sadie is doing for a drug called Abiriterone (sp?) which can be given to women with Androgen receptors. There is a thread about it in the secondary section somewhere. I don’t know about TDM-1 but quite a few of the US women have been talking about the fact that it is progressing well through trials.
Hope things go well for you
Laurie x

Hi Lemongrove, so sorry to hear about your news, but I hope you are refreshed from your holiday (sounds great) and ready to tackle what lies ahead. I’ve recently been diagnosed with malignant cells in my pleura (lung mets?) and am due to start the TNT study next week, so I’ll either be given docetaxol or carboplatin and it’s chosen at random.
Regarding the receptor issue, my oncologist thought it was worth checking the receptor status of the secondary even though she said there was only a 5% chance that it would be different from the primary. As the self appointed “Queen of Outliers”, I’m hopeful. Having said that it was relatively easy to drain the fluid from my lungs and get it tested.
The ladies above have given you a long list of treatments and it’s certainly my impression that there are plenty of options to try. Another one to add to the list is Taxane which is due to be licensed in Aug/Sept.
Moondog xx

Hi lemongrove I’m really sorry to hear your news with regards to progression…its so difficult to cope with this progressive disease and its inevitable increasingly dismal news albeit hopefully over a long period of time. I really hope you enjoyed your hols…can I pick your brains re your insurance if any? you will be aware from my previous posts I have now multiple bone mets which have been slowly progressing since Feb 2011. When diagnosed I had radiotherapy to a collapsed vertebra at T4 and went onto exsemestane from arimidex and also started monthly zometa infusions. For a while markers and MRI’s seemed stable as were markers but they never convincingly went down.a few indeterminate lesions were reported and by Feb 2012 they were reporting multiple mets in most of thoracic and lumbar vertebrae.Markers had only slightly increased but during first cycle of capecitabine increased more. Sincr then I have just finished fifth cycle of capecitabine with few probs…but markers seem to be fluctuating around new higher level. MRI after cycle 3 was essentially stable…but I think for me the juries out as to whether capcitabine is doing much.
I asked re biopsy at initial secondary diagnosis because many authirs think it useful. Prof was very unkeen because of dangers to my spine of biopsy. Similarly recent orthopaedic opinion re vertebroplasty. I asked re denusomab vs zometa…I missed trial which was carried out locally but recently NICE have been positive re denusomab…i believe a report is awaited later this month…if positive it may be implemented fairly quickly because overall its cheaper! but overall in Wales at least its not available on NHs at present.
I understand that a drug called everolimus may be available sept/oct time…its thought to prolong effectiveness of exsemestane…The androgen status seems interesting if they can get a biopsy but I think it would be further down the road for you cos you haven’t yet had other more proven chemos.
Good luck! Pamx

Thanks Pam, that is really useful information. I have bone mets and am on exemestane currently. I did read some reports about everolimus but how do you know when NICE makes a decision?

Lemongrove I am sorry about your progression and I hope your med team sort out a treatment plan soon x


I think as a member of the public you can sign up for updates from NICE. Go to the website and indicate what you want to opt into. I get them through my NHS email but am sure you don’t need to be in healthcare to get them.

Hi LG,
So sorry to hear about your progression but as the ladies above have mentioned their’s still some arsenal in the armoury to try yet. I have multiple lung mets on both lungs was dx at the start with primary, due to the fact they are now tiny and stable after 6 months of x1 FEC then changed to x5 taxotere all with herceptin, had surgery mx with lymph clearance and 3 weeks of rads now on tamoxifen/herceptin combo.
I have never had any biopsy on my lungs too be honest I was told the mets were too small to biopsy which is a godsend as I’m too scared to have that procedure done.
Awaiting results of latest ct scan this friday, back in the scananxiety waiting room again, cancer is such an utter shit and like laurie said its the disease that just keeps giving.
Your holiday sounds amazing so glad you’ve had some time out from this cancer crap, your such a strong woman I remember when I was first dx back last year and you came to my aid with your words of wisdom, if there is anything I can help with send me a pm.
Sending you lots of love and light
sarahlouise xx

Hi Lemongrove, Sorry I have no great ideas to share with you.
I am on Capecitabine cheno right now and have been on this before. It has reduced my tumour markers by half each time. I have just finished round 5 and feel better than I did at the beginning of this chemo. I shoud start round 6 at the weekend and then see my Consultant to discuss whether I should remain on this indefinately.
I have been on Extamestane and found it suited me well. But now on Femara as my Consultant likes to change the various hormone treatments after a while even if they are working well. I am not on Femara just now because of the chemo.
I have had a bone biopsy done when I was first diagnosed with bone mets. It was most unpleasant. One of the worst things I have had to endure as they could not get the sample they wanted from my hip. Looking back I should have been knocked out. I only had the area numbed with local and I was in great pain afterwards. Yet other ladies have had this done since I had mine and they all have had in done under anesthetic.
I wish I could offer more but we are all different in our diagnosis and different forms of breast cancer. But just to say I am there for you if you need a listening ear. Take care and keep us posted. Love Val

I am sorry to hear your c**p news but glad to see that you have moved back into battle mode :slight_smile:
You helped me out with a couple of pm’s when I was in a panic last year with mets in my liver, bones, lungs and then brain. I haven’t had anything new that I can add to the lists above but I will say that taxol (paclitaxol I think they called it) was extremely effective for me, although hair and nail loss along with very dry skin + neutropenia and neuropathy were quite tough SE’s, xeloda and eribulin were much gentler with almost no side effects but they were both much less effective (so does it have to feel tough to work? Wish I knew!)
For me the zometa infusions worked better than tablets - I had bony progression on the tablets but have not yet had similar progression as yet on zometa.
I started on exemestane in jan this year. I had liver progression in feb and march. My onc has added faslodex injections as he believes that the 2 work better than either do alone. My liver function tests and tumour markers are a bit all over he place but apparently than can be caused by faslodex (as shown by one small trial in Austria, I can find a link if anyonyone wants it) my ct scan shows stability in liver, lungs and bone so I am continuing on with exemestane/faslodex for at least another month.
My onc tells me that there are lots more treatments left yet. His main concern is that my liver function will deteriorate to the point where I won’t be able to tolerate them. I think you sound as if you have a long way to go before you get to the end of the list.
I did have a biopsy of the secondaries - I wanted to be sure that hormonals were the way to go and also wanted to check that her2 receptors were still -ve. They biopsied my liver mets, it was very straightforward and painless.
My secondaries were 8/8 er and 8/8 pgr her2 -. The primaries were 3/8 er 3/8 pgr her2-. May not be a big change as far aUs the onc is concerned but I was pleased to know and it also made me more confident that there is a hormone treatment out there that will work for me.
Cyber knife sounds like a sensible option for you. Good luck with your treatment decisions. Hugs ((((LG)))))

Hi Lemongrove,
One more taxane that I don’t think has been mentioned above is Abraxane. I had this in conjunction with Capecitabine (Xeloda) before moving on to Xeloda alone.

Hi lemongrove, just to add to what everyone else has said, there are still lots of options and it’s great news to hear gammaknife could still be an option.

I too have just been advised to have my tumours rebiopsied as I’ve had quite a lot of chemo over the past 2 yrs (everything m1yu has had, plus a PARP inhibitor trial last year - I’m triple neg). I had a brain tumour removed in April this year which they’re testing now as apparently lots of chemo can ‘flip’ your status and it’s obv really important to know what category you fall into, a) so they can work out wha treatments are likely to be most effective and b) so you can see which trials are coming up you may be eligible for. I recently went to see the clinical director at the Sarah Cannon Research Institute in Harley St about a new trial that’s coming up. This is the second one I’ve been put fwd for with them in 6 months so there’s new stuff happening all the time.

I know where you’re at - I’m kind of coming to the end of my treatment options too (something I never expected to be saying at 32!) but if you know the right people to speak to, or rather your onc does, there really is lots in the pipeline and they’re always looking for healthy guinea pigs for the new targeted therapies that are coming through.

Best of luck with everything xx

Just a quickie - I’m struggling with severe fatigue afte rmy rads for bone mets - pain may be better but I can hardly move!
Aromasin - I changed to Aromasin from Arimidex on sec dx last September. I gradually felt worse and worse, really bad aches, stiffness, appetite, taste buds, energy - but put it down to the secondaries! It was only when I saw onc in January they suggested it may be Aromasin. Apparently it’s well tolerated by most people - I was unfortunate - but just be warned and shout earleri than I did - I ‘wasted’ a cruise from Bangkok to Hong Kong being hardly able to eat or move last Christmas! PS If you fancy another russian adventure when you feel better, try a rive rcruise from St Petersberg to Moscow - thoroughly recommended!


Lemongrove. How are you doing now? Kind thoughts being sent to you, Val

Thank you all for your replies. Feeling a bit better emotionally, since our holiday. Attended launch of UKCK (cyberknife charity), on Monday, and felt very energised by that, as I know it’s going to make such a difference for cancer patients.
I had another CT scan on Tuesday, so will find out next week if there has been any more progression. If there has it will indicate that the Exemstane is not working, so will have to sort out what’s next.
At the UKCK launch I was almost reduced to tears when the CEO of the Victoria Foundation said that if I needed CK again they would probably help. Don’t think I could take them up on it, because I’ve already had my bite of the cherry, and it’s time for someone else to benefit now, but their kindness really knocked me for six.

hi ladies,
i want to go to dubui in november plus go to see my son in australia this year too, and i can see that lots of ladies are taking holidays i was dx with lung mets in jan on my 16 taxol today and desperatly need a holiday and break from this, but its insurance i have phoned some insurance companys but they say they can only insure me when i am not having chemo, which i am right now, any advice would be appricated.
thanks lorraine

Well done on the charity - must have been such an emotional time. Good to hear you a feeling a bit more like yourself
Laurie x
Lorraine, if you go to the secondary breast cancer heading, somewhere in there is a sticky thread about travelling insurance. I will try to find it and bump it up for you so it appears in the latest posts

I am 45 years old, mother of two great kids, wife to a fab hubby, and doggie mum to a Chihuahua. Diagnosed with BC August 2009, mastectomy Sept 09, Lymph node clearance Oct 2010. 6 months chemo,bald as a badger, one month of radio. Supposed to be clear, put on tamoxifen but struggled to take it due to pains in legs and difficulty walking. Anyway small lump on skin returns near mastectomy scar Oct 2011 just as i was due to have my reconstruction. What should have been the end was only just the beggining. Didn’t worry as felt fine, had CT scan just to be on the safe side, bad news, bone mets to pelvis diagnosed Oct 2011 and obviously incurable (the bastard).How DARE it try to take ME away from my family! Radio to pelvis, Nov 11. Started Capcitabine Jan 2012 but after a few cycles was feeling quite poorly, had regular breaks on it. Then another local reoccurance last summer meant the end of the chemo, another op, and the beginning of Exemestane. Only took this for a few weeks when i had new mets to shoulder and possible lung met but the lung wasn’t obvious. So my onc at the Christie in Manchester applied for funding and I am now taking my second cycle of Exemesatne in combination with Afinator (Everolimus). Not had a scan since Oct last year so think i am well overdue, Side effects so far, chest pain after 1 week, subsided ok, mouth sores (i am using baby toothpaste and the Difflam is way to strong for me!) Itchy rash week 5, loratadine cured (asked for non drowsy though!). Basically doing ok,bit tired here and there but which busy mum isnt . Worried about aches n pains and what the hell’s oing on in my body that i dont know about!!Would love to have contact with others in the same situation as me. I live in Bolton.

Hi chicken,

Have a look at the bone mets thread - I’ll move it up for you. There are some ladies from your neck of the woods and some on the everolimus/exem combo. I’m a bit further north but have met a couple of the ladies from the Bolton area at the monthly Liverpool meet-up. I am on my second week of ever/ex and have some mouth ulcers already. Am also tired but don’t know whether that is due to the new drugs or fentanyl patches I’ve started using for the bone pain or a bit of everything.Anyway, join us on the bone thread and perhaps come to a meet-up in Liverpool…