Hi, I wasn’t sure where to post my first thread, I find the threads quite confusing to navigate! I have been reading threads on this forum every now and again for a while but have never had the confidence to participate. I was reading a thread on Liver mets and wanted to comment but can’t find my way back to it now I’ve registered!
Anyway, I am really impressed with the support and information sharing that appears on these threads. I’m hoping that someone can guide me to questions I should be asking and any shared experiences.
I’m 40, have two children, 10 and 15, who apart from my great life are what drive me to fight. My cancer, her- oest+++ and prog+ was diagnosed in 2006. I had a mastectomy, radiotherapy and FEC, then took tamoxifen for almost 5 years before secondary diagnosis 5 years and 5 months later. In November 2011 I was told that I had bone, lung and liver mets and was so frightened I didn’t think I’d live to celebrate my 40th birthday - I did with a Docetaxel cocktail! I was initially treated with Ibandronic Acid, Zoladex and Letrozole. Over the following 9 months my lung and liver tumors became non detectable and my tumour markers returned to normal, which was great. I wasn’t scanned for 6 months after this as my markers remained normal. In January 2013 a CT showed that new tumours were visible in my liver and I was advised to stop Letrozole and because I was mildly symptomatic of these new tumours I started Doxetalel in March. Had I been “truly” menopausal I could have tried a new drug which can help when Letrozole stops working.
After my first 3 cycles the largest tumour in the liver, 3cm, had shrunk by half, but I started to develop peripheral neuropathy and although I continued to have the remaining 3 doses they were at a reduced strength. The post chemo CT showed a slight shadow around the largest tumour which I was told they were not sure what this was but I was considered to be stable and so restarted Zoladex and started Exemestane. During the summer I didn’t feel at all well and my next scan in September showed the largest liver tumor is now 4.7cm, bones were stable and still no evident disease in the lung, bloods remain normal.
My treatment now is Capecitebine and Ibandronic Acid. Apart from a chest infection I am feeling so much better, so am hoping the new treatment is working.
My personality in general is to do what I’m told and go with whatever the oncologists say but I have questions and am looking for your opinions/experience and what questions I should be asking the oncology team?
Given my tumour markers are normal does this mean my receptors may have changed, should then I request a new biopsy?
Should my Zoladex have been stopped? I feel vulnerable to Oestrogen with out it.
Without Zoladex should I seek an alternative form of ovarian ablation so I am eligible for post menopausal treatments/studies?
I am quite good at taking 1 day ata time but do succomb to fear and I feel like I’m ticking off treatment options, how long until I run out/are thre other options if this Capecitabine doesnt work?
Welcome to the BCC forum where I’m sure you will find lots of support from fellow members. I’ve had a look to see if I could find the other thread you referred to, and wondered if this is it:
As well as the support on this forum you might find it helpful to give our Helpline a call for information and emotional support. The opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000
Hi Lam, sorry you have to post in the secondaries forums but I hope you find help and support here, we are a friendly bunch. I don’t have liver mets, I have other mets but to try to answer some of your questions, I too had my monthly jabs stopped and my periods returned on chemo and I had further progression. Now, finally, I’m menopausal. If I wasn’t I would be looking at ways of stopping my periods, stemming the flow of oestrogen. Reading through the treatments you’ve had so far, I’m not a medical person but to my knowledge you have many more treatments still in your store cupboard. :smileyhappy: I have reliable markers so if I suddenly developed progression while my markers remained unchanged I would definitely ask about the reasons behind this and would ask if having a biopsy would be helpful.
Good Luck with Capecitabine, it worked well for me for around 4 and a half years.
Sorry if you have seen this link but here are some chemotherapies for secondary bc.
Hiya. I am in a very sim ilar situation to you, but the tumours in my liver are 6.9cms and 4 others about 1.5 cms. My tumour markers are about 25-ish and have never changed…all it means is that tumour markers are not particulary giving too many indications so the onc and team won’t rely on them. It does NOT mean that your hormone receptor status has changed. yes, it can change… I had a liver biopsy to check for change and it was most unpleaseant and there was no change.
I am now on Eribulin chemo and Denosumab bone juice. I did however get my ovaries removed which WILL give your onc more treatment options open to you as and if needed.
I treid Capcetamine, didn’t work for me, but there are loads of treatment options avaliable to you yet and you havn’t thought of all the hormone therapy options either-you’ll be around for a while yet working your way through the long list…
Keep positive, keep strong and get on with enjoying family life, your kids and you deserve it!xxx
Hi LAM
So sorry to hear your liver mets had grown again but hoping that the Capecitabine is now working for you.
I have secondaries in my bones and now in my liver. The bones diagnosis was in 2008, 5 years after my primary dx and I’m sure coming off zoladex for the primary treatment did have an affect as I am strongly ER and PR positive. I had my ovaries ablated in 2008 to ensure I definitely was post menopausal as I didn’t want to go back onto the monthly injections but at the time was peri menopausal. I was on Arimidex for 5 years which worked really well for me but earlier this year mets showed up in my liver after a CT scan. I was also put on Capecitabine, which has been working well for me, but also requested a liver biopsy as I had read on here that up to 30% of HER- secondaries can change to HER+ The biopsy showed that I had now changed to HER+, as well as becoming slightly less PR+ but still ER+ It certainly isn’t a pleasant experience but it meant that I knew that hormone treatment alone would not hold the little blighters at bay once I come off Capecitabine. Hope this may help you and, by the way, at my hospital tumour markers are not used so I can’t offer any help on that side of things.
Nicky x
Hi LAM
I was recently diagnosed with liver/lung. and bone Mets so I’m just starting out on this journey. I had breast cancer in 2007 with a mastectomy,/ 6 months chemo/ radiotherapy then tamoxifen for five years. Since my recent diagnosis I’ve had two lots of Taxotere which has had its moments and I’m due my third on the 21 November. My first scan is due on the 3 rd Dec. I’ve had several mental meltdowns thinking that I wasn’t going to see Christmas but have calmed down a lot now. I too have been reassured that I’m just on the very first rung of treatment and that there’s plenty more on offer to me in the future Jane xx