Not been on for a while, trying to live my life, almost 4 yrs into secondary diagnosis. I take exemestane as a hormone blocker for my lung met, and denosumab for my pelvis bone met.
Sadly the lung tumour, after yrs of shrinking is growing and has doubled in size since last scan. It was a bit of a shock as I was beginning to feel invincible! Doc thinks it’s mutated. He’s getting a 2nd opinion but is pretty sure, and has said the next step is to offer me chemo tablets. I know nothing about this type of treatment. I’m reeling a bit, and feel very negative which is unlike me. Started thinking about how I’ll die in pain and uncomfortable, and where I’ll be buried etc. But really just want to get on with life. I’m booked onto a tall ship sailing trip and also worried I’ll have to inform the insurance company of my new health development. Any advice welcome.
I have no helpful advice here as I don’t know your details, but I do sympathise with the shock after several years of boring stability! I had begun to feel I was invincible too. I just thought I’d suggest that if you are moving on to tablets it sounds like capecitabine which I am now on after herceptin failed for me. There is a dedicated cape ( also called xeloda) thread here if you are going in that direction where you will be ‘welcomed’ and find very helpful advice and support. This is a strange journey. A learning curve. I think there is a thread about insurance and breast cancer too. Of course if you are on tablets you should be more free to travel than on IV.
all the best and do use the threads to your advantage. Browse! And let us know how you get on.
I too know how you are feeling. I had 3 and half years on Exemestane and found it an easy hormonal and kind of just got on with life. So like you was totally floored with the dreaded progression. For the last 9 months I’ve been on monthly Faslodex injections, a different kind of hormonal and have got consultant appt tomorrow to have results of latest ct scan ( I’ve got bone and liver mets). If there is progression I’m thinking xeloda chemo tablets will be my next treatment. There are so many good treatments that unfortunately we don’t have access to on NHS at the moment or because we are not on our first line of treatment. They are currently looking at Ibrance being available to patients who have had more than one line of treatment in the metastatic setting ( currently only given if newly diagnosed stage 4) also looking at Abemaciclib in combination with Faslodex … the go ahead for that may be this year. I will be grilling my poor Oncologist about all of this tomorrow.
Hello. Yes I had two tumours in lungs that were secondaries and I’ve been in Abemaciclib for two years but then more popped up. I had a blood test at the Marsden - Gardant 360 which showed three mutations and I am now on specific targeted therapy for that. The blood test is not licensed by Nice on NHS. But should be next year. I didn’t have the time as they couldn’t biopsy me and would be trying different targeted therapies so we paid. I’m just hoping now the new meds work ??? Good luck xx