Hi Patricia11 - my TNBC recurrence happened in 2014. The surgeries to remove it spread it in my skin and I was then told it is incurable. For my primary treatment I had FEC-T chemo and rads. My first chemo for the recurrence was Carboplatin and Gemcitabine - I got to NED (no evidence of disease) with this treatment. Although it came back I'm still well. I was given Capecitabine next but I'm one of the few people who had an intolerance to it so that was scrapped before I'd finished the first cycle. However, many ladies do very well with that, finding it an easier treatment (it's an oral chemo) and many have been kept stable for years on it. After that I was put on Eribulin and have had that for 7 months.
Don't think there are no options but if you're not happy with what you're told I would recommend a second opinion at a different hospital. My former onc didn't want to give me systemic treatment and wrote me off, so I know how you feel.
Also, there are many clinical trials at the moment for TNBC - check out the Cancer Research website for clinical trials. There's an immunotherapy one (being run at The Christie, Manchester and in London) which you may be eligible for: http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-pembrolizumab-for-trip... If you Google (though we don't generally recommend that!) there are some very inspiring stories about it for other cancers.
It's a very difficult time for you but, as others have said, once you have a treatment plan it gives you a focus and becomes less stressful. Don't give up. We're here to help you.
Wishing you the best.
Ellie and the rest of you loving ladies that you so much as your posts have helped me so much and given me hope when i had none before.
I feel calm and stronger and it is only because i feel connected to you all as we are sharing the same journey.
Bless you all and sending megga hugs and kisses
I have applied to join the closed thread so hopefully we can chat further on their if i am approved.
Thank you to you lovely ladies for welcoming me to your tread. It all happened very quickly for me as was first dx with HER2 breast cancer and had the full treatment which finished January then having herceptin and all looked great. I started back to work in February and had a new kitchen put in and i was feeling so positive about the future. I just got a clear mammogram and a doctor examied me for lumps and gave me the all clear. Then less than a month ago i got just a couple of stringy lumps along my scar line.
I was dx with TN BC Thursday and the doctor who was a breast surgeon said this cancer wont respond to chemo, I cant have rads as had in same place before and it is not operable.
I am now having a scan but am terrified they wont offer me any treatment. Please tell me was you told your TNBC wouldnt respond to chemo when you were first dx.
Any comments please as i need to have some hope i can at least try treatment to prolong my life xxx
Hello Patricia welcome
Redridinghood has posted to Stresshead in the Treatments and Medical issues board how to access the private group. It is quite good information it was easy when I first joined but it has changed since. Just scroll down the 1st page and you will find it
I hope this helps xx
Thankyou Mo you are a good un (((hugs)))
I was dx with HER2 breast cancer in April 2015 and i had mx, chemo and rads which finished in January 2016. I then noticed a stringy bumpy thing growing along my scar line in my armpit and i thought it was scar tissue but yesterday i was told the results of a biopsy and it is triple negitive b cancer. The doctor said it cannot be operated on because of its location which i dont understand, it wont respond to chemo as its back so soon after chemo finished in January and i cant have rads again. So sounds like they written me off!!
I am due to have a scan on Tuesday to see if spread further
I am numb with shock and would welcome any comments please
I would love to join you lovely group of ladies xxxx
Hi Kittycat40, it seems that we have a lot in common - unfortunately!!. It would be great to contact you directly - like you I am always researching new things. My onc mentioend that if ebrulin didint work he would refer me to an immunotherapy professor who runs a lot of trials in breast cancer. He did say that if immunotherapy is going to work it could work better for TNBC. I have also had the tumoor tested for genetic mutations.
All the best
Thanks for the replies ladies. At least I am not crying every day now just every couple of days. I had to miss treatment last week because of low bloods so that didnt help. Hopefully will get the ok tomorrow. Computers are great for getting in touch with people like yourselves but yeah I know I shouldnt go delving into the dark hole of statistics. Hope your all doing ok. x
Need to hear some positive outcomes from you ladies. Had tnbc last year for which had chemo a mammaplast and rad. Had a whole month thinking all ok only to be told about two months ago it had gone into my lungs. Absolutely devastated. Have started Gemcarbo. Try not to look at stats but when your at home all day you cant help it. Please give me some positive feedback.
I'm sorry to hear you're having a hard time with Gem-Carbo. With hindsight, my first cycle did hit quite hard in terms of fatigue. The only sickness I had was from the antisickness I was given before the chemo dose. After changing antisickness I was okay and from the 2nd cycle onwards I had a reduced dose of the Gem-Carbo and only had mild fatigue for a couple of days each cycle. The reduced dose still got me to NED, so perhaps your onc can do that for you too?
I didn't lose my hair on gem carbo. In fact it grew back after I'd lost it on a previous chemo! It does hammer your bloods and I had to take a lot of anti-sickness with it (it used to strike suddenly about 5-6 days after the infusion so if you feel even vaguely queasy start popping pills!!). Hopefully it won't affect you this way but forewarned is forearmed. Once I had the extra tablets sorted I was fine and found it very manageable.
Also wanted to reassure the newcomers that things to get more normal again. I had secondary diagnosis shortly after my primary back in May 14. I thought that there wouldn't be a day when it wasn't hanging over me. I will admit there have been tough times but there are also days when I hardly think about it or at least only think about it in practical terms such as juggling appointments. Getting underway with treatment definitely helps.
Only about 1% of people lose their hair with Gem-Carbo but unfortunately I was that one! It had taken me 18 months to get it to shoulder length following FEC-T. All the other people I know who've had Gem-Carbo have kept theirs, so fingers crossed you will too.