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?
1. Given my tumour markers are normal does this mean my receptors may have changed, should then I request a new biopsy?
2. Should my Zoladex have been stopped? I feel vulnerable to Oestrogen with out it.
3. Without Zoladex should I seek an alternative form of ovarian ablation so I am eligible for post menopausal treatments/studies?
4. 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?
Thanks,
LAM
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.
