Was recently dx with what thought was mets from primary bc 9 yrs ago. Turns out after biopsy results received today, it is new different cancer and is triple neg. straight to Chemo. Anyone else? Any advice appreciated. Carrie
Hi carrie cant help you im afraid but ask tge nurses in the other section. They might be able to help. Good luck. Stay with us on the forum there are a lot of lovely ladies who can help. Did they say anything else. Sounds like thier lingo. Keep strong and ask as many questions as you can when you go for your chemo. Sending you a big hug sue x
Thanks Maldives. Hug back.
Hi Maldives. It’s all been a bit ‘haphazard’ really. At first I was told I had spine mets and possibly lung mets, together with breast, lymph node and neck involvement. Was set to go on zometa and letrozole. Now after biopsies of breast, found not same as original cancer and triple negative. Before for primary took aromasin. So confused and think gone past worried. Feel ok. No real pain apart from bone which they say is arthritis. Nevertheless, chemo in two weeks to make me feel really ill. Just thought I’d give more detail. CG
It seems that no-one has experience of secondaries triple negative. I find that hard to believe and think I am perhaps on the wrong thread. Either that or there is no hope? Has anyone experience of this situation or can you point me in the right direction to an appropriate thread. You have been so supportive so far. Perhaps this is really rare problem? Carrie
Ps I know I am straight to Chemo and all that that brings. Due to start on taxotere. Side-effects I know. Just wondered if anyone else going through similar? Carrie
Hi Carrie,
I am on Taxotere. I have sent you a private message. xxx
Hi Carrie
i had Taxotere just after my primary treatment. It is a very good drug and very effective. I lost my hair, but it came back again. I also, 17 years later still have some numbness in my feet, but I credit Taxotere with my very long time being cancer free…( ten years) am now back on chemo again, but had an excellent run.
hugs,
Moijan???
Good evening,
I saw your message and really felt like I wanted to reply to you. My mums first breast cancer diagnosis was hormone receptor positive (5/8) but the second diagnosis is only 3/8 which is apparently classed as triple negative as she is her2 negative. I had heard that triple negative responds well to chemotherapy. I hope you get on well with your new chemo. Mum is on capecitabine, which is a chemo tablet. Sending you a very big hug. I hope you don’t mind me replying. I’m not going through this myself but my mum is and I absolutely love her to bits, my best friend, and I have done a lot of research over the past couple of years xxx
hi Carriegib,
you are not alone!!
My primary was 6/8 er+, her2- but a short time into my secondaries (skin, bones, pleura) it was TN…a big blow as i thought i had all teh hormone therapies and new drugs to go at. I have loads of chemo’s which have only worked for a short while (docetaxol/cape, cape on its own, eribulin, paclitaxel, carboplatin). All were ok while i was on them but as soon as i stopped the mets flared up again. I am curently looking into trials as the only thing left is to revisit a chemo ive had before. I’m not trying to put you on a ‘downer’ bt trying to say there are loads of things for you to go at yet. I am 3 years down the line now and at times its very hard but something deep down within us sems to make us keep pushing. I’m sure ther’ll be a treatment which will work for you. Please keep posting. x
Hi Moijan and FF…this is all very confusing isnt it. I first had docetaxol and capecitibine for 6 cycles then cape for another 4. I begged my onc to let me stay on cape as i had read about a lot of ladies on here who had ben on it for years but he was adamnant i could only have 10 cycles. The mets came back!! i then went onto other chemo’s back to back as the mets didnt improve. This ;last lot i had…carboplatin…my new onc said i could only have 6 cycles and then he took me off it. That was in Agust and ny november my mets were spreading. He gave me carboplatin on its own rather than with gemctcibine, which seems to be the norm, as they are very potent and didnt want to give me two if one would work. He said we could always go back to the gem but it hasnt been mentioned since. I asked about abraxane when i was on taxol??? and was told no because it was the same thing (although i believed otherwise). I have vinorelbine on my list but my first onc discounted it and my new onc hasnt mentioned it. I can appreciate that these drgs are very powerful and can do untold damage to your body but as you say, it stands to reason that no treatment = further spread???
I know i would rather stay on a chemo that was working and which suited me for as long as possible, especially as our bloods etc are checked regularly. My onc says the better we can be off chemo the better cos it gives the next one, if and when you need it, a better chance of working. I do have to say the more i had the less time they worked. Its a bit of a tightrope i think.
I think you are wise Moijan to request a biopsy to determine your status. Let us know how you get on. x
Hi stress head. Just out of curiosity did they just stop the cape or did it stop working.
Ive been looking into it as im just starting on it again. From what i have foubd out a lit of ladies stay ob it for years with good results. Im going to ask to stay on it this time as last time they just did three cycles. It might be worth revisitibg cape if you had good results just a thought. Xxx
Sorry stress head just reread your thread. For some reason i find i miss half the information
It could be all the painkillers im on.
Anyway appoligies. I thought we had a say in our treatment? Tell him its your life not his and to stop being an arse. Good luck xx
Hi Stresshead…have pm d youxx
dont think they can do a biopsy…as the tumour is now scar tissue…but maybe they can look at my blood to see…a ? Liquid biopsy??
Maldives, I was on Cape for two years and then the cancer mutated, so it stopped working…would have stayed on it if it had been working?
hugs to all xx
Mojan ?
Did ask the onc…apparenly im not triple neg…but the only way to find out definitely is to do a biopsy…but the bc is no longer visible…so…
Moijan???