I was diagnosed in June 2006 and had mastectomy and 11 lymph nodes removed (4 positive). Had 8 cycles of EPI/CMF and 6 weeks of radiotherapy. Finished treatment in March 2007. I am triple negative and have just been diagnosed with bone and liver secondaries. Oncologist is recommending 3/4 cycles of taxotere then further CT to see what it has done to tumours. What is taxotere like compared with EPI/CMF?
Knew that triple negative was more likely to come back but didn’t think that it would be back so soon. Feel cheated because others that I know with secondaries had bigger gap between primary and secondary diagnosis. Also does the fact that it has come back to soon, mean the general prognosis is bleak?
Being treated at Royal Surrey - anyone else there in similar situation?
Gill Sc
So sorry to read your posting. I was diagnosed with secondaries in bones at end of October last year and finished my treatment for primary breast cancer in March 2005. I felt cheated after only two and half years of ‘well-being’ so know totally what you are saying. I am so new to all this still but there are so many ladies on these forums with similar diagnosis and I have gained much inspiration and encouragement from them and hope you do too.
I am being treated at Guildford under care of Dr Neal & Mr Kissin and think you will find quite a few women are having treatment there also that use these pages.
There is a secondary chatroom on a Tuesday evening that you might want to join. I had never used a chatroom in my life until I was diagnosed last year but felt so lost that I went on the chat room and it was such a relief to know that was not alone in how I was feeling. I go on there most weeks now and find it really helps to talk about how feel, what i am going through and feeling and also how others are doing.
Gill so sorry you have to join us. There are quite a few of us here that were either diagnosed from the start with secondaries or very soon after. I was diagnosed with bone mets from the very beginning in 2003. Good Luck with taxotere…xx
Welcome to the forums, I am sorry to read that you have recently been diagnosed with secondaries and just wanted to let you know of some of the support we can offer which may be helpful to you
As Angee has said we have a one hour secondary ‘Live chat’ on Tuesday evenings where you can ‘chat’ to others who are experiencing similar feelings and treatments so will have an understanding of any concerns you have. You are also welcome to contact our confidential helpline on 0808 800 6000 for a chat to one of our specialist nurses for one to one support, advice and information and a ‘listening ear’.
The following links will take you to booklets written by Breast Cancer Care which contain information about a secondary diagnosis, treatments and support available and two which are specifically about secondary liver and bone cancer:
Hi Gill,
So sorry that you are back so soon. I have liver mets that were diagnosed around the same time as having my lumpectomy last year. I had Epi & 5FU i believe taxotere can be a little harsher from what the other girls say. There’s plenty of support here please feel free to unleash your feelings here.
Take care,
Allie
Just wanted to say I was sorry to hear your news - must be hard to have had such a short time between primary and secondary diagnoses. I had almost 5 years from primary diagnosis until I discovered I had liver mets last June.
Haven’t had taxotere but had taxol (another of the taxane group of drugs) last year - found it didn’t make me anything like as sick but did get problems with my finger and toenails (and tiredness towards the end) but was also taking Avastin so don’t know which caused what really! Think people vary hugely anyway in their response - sure you’ll get lots of advice and support though if you do get some side effects you need more info on. Or if you just want to let some steam off.
I’m not at RSCH - husband has private medical insurance through his work - but am being treated by Dr Neal (and Mark Kissin) at Mount Alvernia/Nuffield in Guildford (may have to transfer back to the NHS at some point because not sure how much longer the insurance will keep paying out). I do go to the Fountain Centre quite regularly though - have you tried it out? It’s brilliant. Can give you more info if you don’t know about it.
Also do join the live chat if you feel able - easier to get immediate responses to queries but also feels much more like normal communication if that makes sense. Think as Angee says, it really helps to make you feel not so alone.
Hi Gill, I am in a similar situation. I had 3 years between my last primary diagnosis and my secondaries in total, but in between those dates was a local recurrence. Over the last five years, in fact, I haven’t been able to go more than 18 months without a cancer incident of some sort.
I was diagnosed with bone mets in August, and then in January found out I have mets in my lymph glands - armpits, chest and abdomen (and probably others, but by then I wasn’t listening!).
I was being treated at the Royal Surrey under the care of Mr Kissen, who I loved, but decided to transfer to the Marsden to see if I could have access to other drugs. In fact, it was a good move because I have just been accepted onto the trial for taxotere and avastin. In order to qualify for this trial you must have “measurable” metastatic disease (ie more than bones) and not have been treated with a taxane before.
Mr Kissen has been great about my transfer and has offered to continue seeing me as part of his surgical follow up, so I do feel I am getting good care.
It sounds from your history that you may be eligible for the taxotere/avastin trial too, should you be able to transfer to the Marsden. If you are interested in this, I can give you the number of the research nurses so that you could discuss it. There are just 8 patients at the Marsden on this trial at the moment and they are actively recruiting.
Do keep in touch and let us know how your treatment is progressing.