31-08-2018 10:45 AM - edited 31-08-2018 10:47 AM
So sorry to read your story, I'm not sure whereabouts you are but have you thought of getting a second opinion at one of the larger Cancer Centres. I went to the Royal Marsden in London for one four years ago.I was then told they were going to treat my cancer slightly differently to my own hospital where I live so I decided to transfer my care and have been there ever since.
I would be happy to discuss how I was able to get a referral there should you wish to consider that route. x
30-08-2018 09:44 AM
hi Chris (and everyone else)
I too have TNBC secondaries, in my lymph system. I'm currently on my 12th cycle of Eribulin.
I've found the Triple Negative Breast Cancer Warriors Group on facebook an unbeatable source of information, and very very helpful. Its a tightly 'closed' group, so as safe as it can possibly be.
Kindest and best wishes to us all living with this
28-08-2018 08:23 PM
Hi Chris, I too have triple negative breast cancer that has spread, I was on chemo and my scan also,showed a further spread. However, I then moved to a different chemo regime and this has managed to stabilise things for a while. it is a devastating diagnosis and my oncologist initially gave me 6-12 months. I am now 13 months in and feeling really well. I am older than your wife but do not believe this changes anything with this tnbc terrible disease. I hope her oncologist upis able to offer a different regime that will make a difference. Best wishes.
28-08-2018 03:14 PM
Chris, I'm beyond words of what to say to you and your wife. This darn cancer can be so cruel. I know TN can be very aggressive but want to mention that not all chemotherapy works for each kind of breast cancer. It can be a very individual thing. Just maybe the drug your wife took wasn't the right one. Every treatment each of us takes is trial and error! Might work OR might not. I can make no promises, but hoping her next treatment kicks butt! Hugs! FF
28-08-2018 03:06 PM
Tourdefrance and Rosie, Thank you for responding to Chris and his wife. I was hoping someone with TN would hop in here! You both provided some useful information. FF
27-08-2018 10:16 PM
I am so sorry Chris to hear about your wife and saddened by the impact on you all x
I too have triple negative breast cancer that has metastasised to my skin and is spreading quite rapidly. Although I am now on Eribulin chemo, after 2 cycles I cannot yet see an improvement.
I looked up the work of professor Andy Tutt which looks hopeful though still early days. Have you thought about a second opinion to The Christie, Royal Marsden or Guy’s. Also molecular intelligence is a good way of understanding the makeup of the tumour and options for treatment or trials.
i have good days and bad days and although a bit older than your wife (55) am not ready to contemplate dying. If she would like to communicate/chat, I am very happy to do this.
Hoping and praying for some positive treatment and support
27-08-2018 09:55 PM
Hi Chris, I am so sorry to read about the scan results, and wanted to say you, your wife and family are in my thoughts. Such a difficult time for you all, sending you much love and strength to stay strong.
Thankfully Rosie65 has come along with what sounds like some really helpful information and advice, hopefully you will get good support from that group, but we all are here for you too. Take care, Kate x
27-08-2018 08:09 PM
Hi Chris So sorry to hear of your wife’s secondary diagnosis. I have primary triple negative cancer and am a member of the Triple Negative Warriors UK Facebook group. I strongly recommend your wife joins this group as she will find many other ladies in the same position and similar ages as it typically affects the 30 - 50 years age group. There is lots of support and you can find out about the treatments and clinical trials available to those with a secondary TN diagnosis. Research into Triple Negative BC is moving very fast now and not all hospitals are up to date so the Facebook group is invaluable as it has over 600 members from across the UK happy to share their knowledge and to offer love and support. There is plenty of hope and I know of people on the site who have proved their medical teams wrong.
27-08-2018 07:31 PM
Chris I am so very sorry that it wasn't better news for you all today, the hand some are dealt really shakes me to the core at times and as much as we see here across the forum hearing of young families having to cope with this kind of news just saddens me so much.
There are no words really but be lead by your wife, if she can find the will to fight then I'm sure you will stand there right beside her, a mothers will to be here for her children is a mighty one.
Im sure I can speak for us all here and say we send much love and strength to you both Xx
27-08-2018 07:24 PM
Devastated for you Chris, and your dear wife. No words can be enough today, but I am truly so sad.
It isn't much help, but please tell her that people who don't even know her are in her corner, and we're behind you all the way. With great affection to you both and your children. x
27-08-2018 07:12 PM
27-08-2018 10:08 AM
H Chris, Its so unfair that you are facing this with such a young family, cancer really has no conscience sadly.
We do have triple negative ladies across the forum so I hope someone will come along soon who can give you move advice than we can.
If you haven't already then I suggest ringing the helpline here, they may be able to put you in touch with someone who is in the same situation that you can talk to.
Chemo is the main treatment for TN so your wife will likely be on it in one form or another from now on but never give up hope, it may not be curable but it can be very treatable, ladies here are 10 plus years on with secondaries.
27-08-2018 08:28 AM
Chris, my heart goes out to your wife and you and your children, I hope your wife gets a treatment plan that will give you something to hold on to and focus on.
27-08-2018 02:34 AM
Chris 1980, Hoping you and your wife get a plan of action that is doable!! I'm not triple negative so don't know how to respond. I do know that when you are triple negative, chemo are the options. The hormonal treatments won't work on it. Hugs! FF
26-08-2018 07:30 PM
Hello again Chris, as Paulus has said once the weekend is over I’m sure there will be people in a better position along. I hope you get the most positive results tomorrow, please let us know how you get on. Thinking about you both, Kate xx
26-08-2018 04:45 PM
I truly wish your wife, yourself and family the best possible outcome, such difficult times for you.
I hope someone might be able to come here and advise, and maybe once the Bank Holiday is over, there may be someone on the BCC Helpline you could talk with? I think sometimes they have volunteers on the phones who have personal experiences of particular situations, and maybe they can help. I do hope so, and that you get all the information and support that you so need.
26-08-2018 12:37 PM
25-08-2018 05:42 PM
Sadly Chris, all I can do is send a hug to you and your wife and hope that someone can come on here to help you. Truly difficult times for you and the family, but hang on in there for scan results - waiting, wondering, your minds in turmoil, we can only imagine how you are both feeling right now.
Wishing you strength xx
25-08-2018 05:25 PM - edited 25-08-2018 05:27 PM
Hello Chris, afraid I’m not in a position to offer advice as although I have secondary bc in my upper spine, I’m not triple negative, but I didn’t want to just move on and ignore your post. From what you’ve said you’re still waiting on some results, once you have those hopefully your wife won’t have to wait too long for a treatment plan to be put in place, and I think most ladies on here agree that helps a lot. I’m sure someone in a similar position, or who can offer more than advice than me, will post soon. Sending you both a big hug....Kate xx