Hi
I have been diagnosed with secondaries in my lungs and liver in February if this year, I would really like to hear from anybody who has been diagnosed with this type of breast cancer and how they are doing with the treatment. I sometimes really difficult to deal with the fact that in between the chemo there is nothing to offer us to slow the growth of the cancer coming back.
My onc said that a lot of the research is going into this area at the moment.
In a nutshell I would just like to hear from someone in a similair situation, how you are dealing with it, are you further down the line than me, how well are you responding to the chemos etc. Are you aware of any trials or research that are about to start within this area?
Just a general chat with someone would be nice because at the moment it freaking me out a bit, I think they would be better giving me an asprin and telling me it was something else that was doing me good!
Diane
Hi Diane
Sorry no one has replied to you yet…there seem to be relatively few people with mets who are triple negative who use these forums.
I’m not in quite the same position as you because I don’t have ‘secondaries’, but am triple negative and I have a regional recurrence in my chest wall and supra and intra clavicular lymph nodes and this recurrence is incurable. (neither surgery nor rads appropriate.)
I was diagnosed last April, three and half years after my primary diagnosis. I had AC and taxotere for primary bc, and for my recurrence initially had 6 cycles of combined vinorilbine and capectibine (xeloda). That reduced my tumours and I then did a further 3 cycles of xeloda before the cancer started growing again. Since Xmas I’ve had five cycles of caroboplatin and gemzar and tumours appear stable (clinically.) I will have a another scan after 1 more cycle. Last scan in December and I still was not showing evidence of distant spread then.
The only standard chemo options I have been told I have left are a return to taxotere or taxol or to try something called pegylated doxorubicin (which is the A: adriamycin in AC).
Some women are gettign avastin through a Marsden trial or some private med insurance and maybe a few PCTs, but the evidence on avastin is mixed.
There is also a Breakthrough trial for triple negatives comparing taxotere with carboplatin…but as I say I’m on carboplatin outside a trial.
The Marsden is running trials on PARP inhibitors which target BRCA1 and BRCA2 cancers (which are mainly triple negative). Also the Marsden has several Phase 1 trials (ie drugs which are in the very first stage of human testing) which may be suitable for triples negatives.
In the US there is a chemo drug called ixempra which is being used for triple negatives but as far as I know it is not being used in the UK (is available in Germany I believe.)
I feel very scared about my limted treatment options so can imagine how you may be feeling. I know I have been very lucky this far not to get further spread and think the chemo I’ve endured over the last year has probably slowed spread down.
very best wishes
Jane
Thanks for your response Jane, I have found an American site that is dedicated to triple negative breast cancer, most of the people on that are on Avastin and the other one you mentioned. It’s not really making me feel very confident in the NHS to be honest.
Diane
I have posted on behalf of new user Sarah
Best wishes
Lucy
Hi Diane,
I am in exactly the same boat, triple negative, secondaries in liver, lungs, clavical nodes, and trachia nodes. Disease is progressing nicely, last chemo treatment totally non effective. Onc tells me the only treatment for triple negative is chemo, and it is just a matter of finding the right one. However I am now starting to run out of time, lungs are starting to pack up, and more treatment may not be possible.
However I have been on a Pfizer study for capecitabine and sunitinib. The capectabine didn’t work, waiting to start the sunitinib. These are oral chemos with less side effects, and take for life if tolerated and working.
Personally, I’ve accepted that I probably won’t see Christmas, and that I have just got the short straw of life. I find that the more I think about all the good things, like my marriage, daughters, nice home, loving family, and try and appreciate them now, rather than thinking about leaving them behind and the inevitable heart ache they will all suffer, I am better able to cope. That is not to say I don’t blub at the slightest thing, and that cancer sucks.
Would be happy to hear from you and exchange views
Sarah
Diane - if you want avastin may I suggest you contact the Royal Marsden. They have ongoing trials and many people appear to be receiving it. I think worrying about things must be horrendous. Geraldine
I was given taxotere by onc prior to finding out about the Royal Marsden trials, therefore I don’t meet the critiera. I just can’t believe how long it takes to get something on the NHS in the is country, I am going to my MSP to discuss this matter further.
Sarah - please don’t give up hope, there are lots of chemos out there and they may be able to find the one for you. I have to live in hope I have girls aged 9 years and 6 years and the the alternative doesn’t bear thinking about. I do have my bad days and have a complete and utter melt down, I also get reall angry that my life right up until the day I die will never be the same as it was. The new norm will just have to do for now!
Keep you chin up and make sure you ask lots of questions about the chemos still available to you
Love
Diane
Hi ladies,
I am triple neg and was diagnosed with secondaries to eyes, liver, lung pleura, lung nodes and bones in December. i have had 5/6 taxotare and the mid way scan was OK - lung nodes and liver gone and bones stable, but pleura still a problem. it seems likely I will be put on suninitib trial ( if they let me, I was barred due to being on Heparin earlier this year) with another chemo (begins with Gaz I think).
Anway my Onc says there are at least 4 or 5 options available at present and seems able to have access to trials…it is so scary as each option seems to lessen the future.
i too have a young family and I intend being around a bit longer.
Chins up girls!!!
Jan xx
Thanks for that girls, it’s nice to know that Im not alone. I know all bc is different but I really struggle with not getting anything other than chemo to slow this down. My onc said that a lot of research is currently going into this but how long will that take in this country!
Sometimes I feel the need to speak to someone with the same cancer as myself, I go onto the american site as they have one dedicated to triple negative, does anybody else feel like that?
Jan what age are your kids?
Hi
sorry to jump in but have only just joined and just feel like chatting to people to get to know them.
Im also wondering what a triple negative means???
I was diagnosed 3 years ago with ibc had recurrence in chest wall it went and now it seems its back again but no evidence elsewhere.
Do remain positive 99% of the time.
Hope you’ll chat
Love Mel xx
I have posted on behalf of new user Sarah
Kind regards
Katie
Hi, Thanks for the thoughts Diane. Have just seen my onc and he has confirmed that I won’t see Xmas. It is too late for the sunitinib, so we are having a last ditch attempt with carboplatin.
I can’t believe its over, its been so quick, I was only diagnosed last January, but the cancer has always been one step ahead. I thought 20yrs thats OK, treatment every 5 yrs or so, see my girls grow up, but its not to be. Good luck to you all hopefully they find the right chemo for you.
Love Sarah
Hi Sarah
I read this post 4 hours ago and I still have not calmed down. Can’t understand any onc not trying anything that they have to hand. Please ask if avastin would help you I am getting it on NHS I know NICE have not passed it yet but if I can get it, you should be able to.
Love Debsxxx
Sarah
what can i say. Like everyone else here I am both sad and angry when I read your post, its a bastard disease and I am so sorry you are in this position i saw your comments above about thinking about the good things in your life and I have found your words very helpful for my own situation. I am angry you haven’t had access to sunitinib or any other of the new drugs. Sending you and your family lots of good wishes and prayers,
cathy