Dec 15 I was diagnosed with triple negative BC. I am scheduled to have 6 months chemo starting Jan 8. Trying to stay positive but Not seeing a lot of positive info out there regarding long term survivors. I have 2 young boys and want to stick around to see them grow up. Any long term survivors out there?
Hi Callcmainc, I do feel for you having 2 little ones and this diagnosis. However, it does make me mad that the media prtray TN as such a dire disease. Granted its not the best but most people with tnbc do survive, over 70% survive and many of these are node pos with big tumours.
I was diagnosed just a year ago so not a long termy yet! However I do know that we triple negs respond better to chemo than the hormone dependents and although chemo was tough it is fast becoming just a memory. We can help ourselves by doing a bit more execise as this has been shown to help reduce recurrence.
You will get used to the triple neg aspect and by having the chemo you are doing all you can to beat this thing.
Love and best wishes to you, Sue x
Thank you Sue. I also read about eating clean which I have been doing since diagnosis. Hoping that will help prevent recurrence. Did you choose double mastectomy? I’m thinking that will also help prevent recurrence.
Hi There. I was diagnosed on October 9th with grade 3 TNBC. Had double mastectomy on 28 November then my chemo starts January 9th. I have 4 boys (2 of mine and 2 acquired !) . What you read about TN is scary, so I have stopped googling and it is what it is.mthe survival rates are pretty good overall . I have been doing a low carb diet. Cutting out the alcohol and also trying to do low fat.malthough over Xmas I decided to have what I wanted including potatoes, wine and cheese !! Am back to the diet now . Good luck on your journey, lots of support for you here xxx
Hi callcmania I was diagnosed with TNBC in November after finding a large lump which I thought was due to lifting weight. I started chemo not long after. FEC not sure if that is what you will be having? Ive just had the third round they have planned 8 for me. It is a rough time but hopefully it will kill the beast. I have wanted to post on here for a while but didn’t have courage. It does help to know that we are not going through this alone x
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In a weird way it is nice to know we’re not alone in this triple negative world we are now in. Anyone live near Orlando?
I just had port put in and I’m a little surprised how much it hurts. This makes me really nervous for how much the mastectomy (I assume I will be getting after chemo) will hurt. Maybe I’m just a big baby ?
Hi Girls,
I just want to provide you with hope - i was dx Jan 2008 Grade 3 TNBC, children aged 2 & 5 - 6 sessions of chemo 3xfec, 3x dosataxil - YOU CAN DO IT!!! I was 34 now I’m 42, huge emotional roller coaster, but if I can do it so can you. I wont lie its tough, I’ve just had my mammogram and been down the path of genetics, but i live my life now, NO-ONE KNOWS WHAT TOMORROW BRINGS XXXXXXXX Love n hugs to you all xxxx
Fairfield and jinny thank you so much for your positive comments. Hope you are both keeping well xx Amanda
Hi ladies,
I was also dx tnbc in oct 2013, had chemo first,lumpectomy and rads, treatment finished in july 2014 and I am now trying to put it behind me, It was a bit of a rollercoaster going through treatment and coping with side effects but it is do-able, wishing you all best wishes in your treatments and it might seem ages away before you are finished but believe me it goes by so quickly just keep positive and take good care of yourselves.
Wyn x
Ps My sister was dx tnbc 19 yrs ago and still living life to the full, most definately a long term survivor and she has been my inspiration x
Hi wyn lovely to hear you are doing well. Also your sister that’s brilliant. So nice to hear such positive comments . I’m on fec t and due to start first of four ts tomorrow. Dreading this one. It feels never ending at the moment but positive comments help to raise my spirits ?xx
Just to give you some good news - I was diagnosed with Grade 3 TRiple Negative BC in May 2011. After 5 FEC and 1 Doxytaxel chemo and 25 radiation I am still cancer free. I spent a good 18 months in a very stressed state of mind, worrying about every niggle and pain, got told to get a life by my consultants registrar! Which made me worse - I was contiunually told during my treatment that I was at high risk of it coming back within 1-2 years and lost a friend who had the same as me, how the heck did they expect me to feel!
Anyway I am coming up to 4 years in May and whislt I still worry I am in a much better frame of mind these days. Whilst on holiday in Corfu last year I met a lady by a lake in the middle of nowhere and we got talking and it transpired that she had also had triple negative and was 7 years down the line and still alive and kicking - gave me a great boost I can tell you.
There are good stories out there.
xxx
Thank you for the positive post janesi. Denmay I’m half way through treatment 4 x fec 4 x t op and then rads and also feeling anxious. It’s nice to see positive posts it gives me a little boost. How long after your treatment do you go for check up. I’ve not finished all the chemo yet but just wondered what follow up appointments we tn ladies have xx
I was thinking it might be 3 months after treatment denmay . I try to wake up feeling positive but then ping start to feel anxious. I do think this forum is really good though as we are all going through this together . The positive posts are a good boost as well. I met another lady in Stoke where I live last week who has just finished her treatment for tn and is doing really well . Xx
Yes it is … Keep in touchxx
Hi pam
I bet your glad the chemo has finished. I should have my second t tomorrow . They prescribed me 4xfec and 4 t surgery and then rads. They are hoping to shrink the lump before the op, did the chemo work ok for you?
Xx
Thanks Pam … My lump was 5cmx3cms so a big one, but they say it is shrinking . They told me that mine will be masectomy … Thinking I may ask for both nearer the time. Have you had a date for your surgery yet ? I think they have penciled me in for beginning of May … Three weeks after last chemo not sure if this the normal procedure . Sorry for all the questions but you are a bit ahead of me in your treatment xx
I just finished 3 rd round of Adrymycin and tumor shrunk from 5cm to less than 1cm. I have 1 more Adrymycin and then 12 weeks of taxol with Carboplatin. Also want to shrink tumor before surgery. So far so good.
Morning ladies
Hope everyone doing ok . Think you mentioned you were having your op tom Pam just popped on to say hope all goes well. Xx
Hi Pam
Just popping in to wish you good luck xxx great the chemo has done its job. How did you find the T part compared to the EC. Part ? Have just finished the EC. And moving on to the T bit but weekly . Hope all goes well today xxx
Hi Brewster
I had second cycle of t last week. Don’t know how it compares to EC as I had FEC first. The ses for me seem to kick in after about four days and last about four. Don’t find the nausea as bad . Im just lacking in energy, my mouth has been a bit sore but the mouthwash works quite well. I asked for the cold mitts at hospital for hands and feet and so far had no pins and needles , also painted nails with black varnish trying to prevent them coming off. One lady at the hospital has worked all through her treatment so I suppose it’s different for everyone . Also if yours is every week maybe you are having a lot of little doses so may be a bit better re side effects. I’m having 4 in total so two more to go. Hope you go on ok xx