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Any triple negative survivors out there?

Sabrown
Member

Re: Any triple negative survivors out there?

Hi. I was wondering if many ladies had large node involvement other than armpit and still clear?
Sue123
Member

Re: Any triple negative survivors out there?

Hi Pam, if you look at the Predict model it states the prognosis from age of diagnosis. Therefore I count my years from date of diagnosis. I asked my onc and he told me the prognosis at the time of my diagnosis

Hope that helps but why not ask your oncologist at your next check up

Love Sue x

RubyLindy
Member

Re: Any triple negative survivors out there?

This month I am celebrating 3 years 'clean'.  I had my ovaries out over 12 years ago to help reduce my risk... but it didn't given that what I ended up with was TNBC.   SO now I am going into my 4th year.   One hard thing for me is since I am 'pretty ok' now.... some doctors don't seem very interested .... like 'oh she is no longer sick.'  

 

I count years on Oct 23 cause that is when I had my two foobs implanted which could not happen till all the surgery, chemo, rad. therapy was over and done.  

 

I am happy to provide support and friendship to anyone dealing with TNBC.  We need each other. 

Whitfield
Member

Re: Any triple negative survivors out there?

Good news Den x

1852
Member

Re: Any triple negative survivors out there?

Hi pam glad cough is improving . Just got result of left mammo today no sign of anything abnormal ya got my appt with onc in August .i try not to think about dates so can't help with that pam .take care everyone 🎀DEN x

Whitfield
Member

Re: Any triple negative survivors out there?

Thank you Marina.

 

TNBC Is very scary.  Had cough for five weeks now but subsiding.  Constantly looking out for secondaries.  Mammo on 24th August which is around three years since diagnosis.  I still can't get clear information when you count remission start from.  I know three years is good but is this from surgery, chemo or rads?   I had chemo first 8 then surgery, then 20 rads.  So the timing is different.  Some say from diagnosis but how can that be as you still had cancer then?

 

Looking at stats and I know we shouldn't but after three years the recurrence rate drops a lot so dates are important.  I think my three years will fall in 2018 but am not sure???

 

Still have pain and tintinus but a small price to pay for life.  

 

Love to you all.

 

eat well, exercise if you can and take care.

 

pam x

Marina
Member

Re: Any triple negative survivors out there?

Oh dear- my page didn't update and I've just answered a post from a year or more ago!!
Pam I am so pleased for you.
Marina
Marina
Member

Re: Any triple negative survivors out there?

Hello Has. I have changed my diet completely, I am a great fan of Dr Gregor and his book HOW NOT TO DIE. It is a whole food plant based diet. In the book he has a chapter on bc. Even if you don't want to make such a drastic change it is a font of information. He has videos on nutritionfacts.org & a Facebook page. There is also a FB page organised by followers called How not to die & Dr Greger ... . After reading the book I have added many things, left out others and feel much healthier generally. It is all non-profit and he doesn't sell anything like other sites.
Highly recommend to you all and don't be overwhelmed at first, it gets easier and you learn so much.
Marycarrillo14
Member

Re: Any triple negative survivors out there?

My mom had tnbc 22 years ago. She was 49. She had radiation once and chemo 2 times. And had a lumpectomy and her lymphnodes removed. I was 10, so I don't remember the exact order. I know 3 years after treatment, she had it again. She had lots of infections and plenty of trouble...but she made it....22 years. Last week, she was diagnosed with breast cancer in the other breast. This time it is estrogen receptor positive 1. We should be and I suppose are relieved that its easier to treat. Good luck! Be strong!
Whitfield
Member

Re: Any triple negative survivors out there?

Over moon x

1852
Member

Re: Any triple negative survivors out there?

Sorry to see you here moomin . I had RT mastectomy 2014 I also ended up with neutropenia and went onto weekly paxitaxol for my last dose it was a lot gentler hope change is better for you too best wishes DEN
1852
Member

Re: Any triple negative survivors out there?

Fantastic news Pam you got result quick which was good of them . How is hip pain hope it's eased . Take care.DEN 🎀

Whitfield
Member

Re: Any triple negative survivors out there?

So happy x

AnnDaw
Member

Re: Any triple negative survivors out there?

Phew Pam what  a fantastic relief im so pleased for you and because they had great result they wanted to let you know a.s.a.p.xxx

Whitfield
Member

Re: Any triple negative survivors out there?

CT scan back and showing lungs and liver clear.   So relieved. 

 

Thank you  all for support.

 

pam x

Whitfield
Member

Re: Any triple negative survivors out there?

Sorry you are here Moonin

 

There is a lady on this site several years in remission. wishing you all the best.

 

oh, forgot to say most TNCB is grade 3 and I had four nodes infected and had to have full clearance.  I'm now 2:8 years in remission.

 

pam x

Moomin
Member

Re: Any triple negative survivors out there?

I was diagnosed in March with TNBC grade 3.

cells positive in lymph nodes - 3 removed 

i have had 3 FEC chemo and 1 T 

i came home yesterday from hospital after having neutropenic sepsis. 

My chemo is changing next Friday to 12 weekly cycles of Carbo/taxol

 

do people survive TNBC?

1852
Member

Re: Any triple negative survivors out there?

Glad scan went OK fingers crossed for good result x

Whitfield
Member

Re: Any triple negative survivors out there?

Scan done thankfully.  Got very sick in tube but they got clear images.  Just have to wait now.

 

You have been such a support.

 

pam x

Melia07
Member

Re: Any triple negative survivors out there?

All the best Pam hope everything goes well today.
Xxx
Shernise
Feather1944
Member

Re: Any triple negative survivors out there?

 

All the best Pam...and everyone else who are going through various stages of this journey!

 

love and thanks for sharing xxxx

 

Whitfield
Member

Re: Any triple negative survivors out there?

Thank you Anne and Den.  CT today.

 

didnt get much sleep as tinnitus was,bad last night.

 

pam. X

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Pam haven't posted lately but look at posts on a regular basis to see how everyone is doing.I've noticed a few of yours over last couple of weeks and have been thinking about you so feel I must let you know this. I wish you a clear scan tomorrow. Your cough could be caused by all sorts of things but as we all know every little twinge is a worry. You've had it pretty rough with one thing or another but at least they seem to be checking everything out for you Pam. You will be on my mind tomorrow duck and I'll keep everything crossed for a good outcome. Love and hugs Anne.  Xxx 

1852
Member

Re: Any triple negative survivors out there?

Pam sorry you are going through all these problems which are causing to understandably causing you worry it's no good me saying don't worry but try and be positive there,s lots of things they can be I know it's hard because any pain we immediately think the worst  will keep my fingers crossed for you . Feel free to email me as well . DEN 

Whitfield
Member

Re: Any triple negative survivors out there?

Hi Den,

 

im not good at all.  Also,have a lot of hip pain which is severe.  Have emailed hospital about that as well.  God I hope I've not not secondary's after coming so far.  Very scared and in pain.

 

pam x

1852
Member

Re: Any triple negative survivors out there?

Has sorry you have had recurrence I don't follow a particular diet ,I do eat a lot more veg and have cut down portions but to be honest still need to lose weight so can't help you diet wise I don't eat as many sweet things now either my problem as been not being able to excercise as much as I would like due to chest problems and also frozen shoulder which I had for 18 months . I hope chemo is gentle with you and you don't have too many SE,s DEN
1852
Member

Re: Any triple negative survivors out there?

Hi pam sorry to hear you having some more health worries , I have had chest problems since last year so have nebulisers I have had several chest infections where I have needed steroids dr not sure what it is ?? Asthma ?coad or chemo damage . I have also been diagnosed with hiatus hernia feel I am falling apart but happy to still be able to enjoy my grandchildren . I had left mammogram on Thursday I think you said yours was August . I hope all your tests and cough turn out to need minimal treatment if any . Keep in touch . 🎀 

Whitfield
Member

Re: Any triple negative survivors out there?

Hi Den,

 

Have cough now so being sent for CT scan!!

 

Had blood test at GPs last week for full bloods, TSH,ALT and B12.  Bad results and been called in for appointment tomorrow.  Worried about blood cancer and lungs now..

 

Will update you when I get some results.  CT next Thursday and GP Tuesday.

 

Hope youre well?

 

Pam x

 

Has
Member

Re: Any triple negative survivors out there?

I was recently diagnosed recurrence (previously ER+, PR+, Her2neu -ve in 2006) in lymph nodes 16 out of 18 nodes positive, TNBC gred 3. Now on chemo cyclophosphamide and toxotere for 4 cycles. Could you give tips on what type of diet you're following (the literatures said that TNBC feeds on fatty acids) and advice on low fat diet and to lower cholesterol.

1852
Member

Re: Any triple negative survivors out there?

Hi Whitfield my mammo is next week a bit worried but I found lumps in breast they didn't show on mammo so don't rely on mammo too much . Hope you ok . Best wishes to all .

Whitfield
Member

Re: Any triple negative survivors out there?

Are you okay Warcol?

 

I'm getting  nervous for next mammo in August as so many lumps in breasts!

 

hope everyone is doing okay?

 

Pam x

Warcol
Member

Re: Any triple negative survivors out there?

 
Whitfield
Member

Re: Any triple negative survivors out there?

Hello Cruzita,

 

Sorry you find yourself here.  Are you in UK?

 

Most TNCB are grade three because of their aggressive and basal cell status.  Just remember we are here for questions.  Don't accept a too long wait for appointments if you can as although what doctors say is right you will want to catch this as early as possible.  I believe in UK there are guidelines for when treatment to start after firs being diagnosed.  Maybe someone here can help with that?   Recall a 30 days period which I just meet but can't recall.  Anyone HELP with this info?

 

I had a 31mm lump and node involvement and and had chemo first then surgery, then 20 rads and this was in 2014 and I mstill here.  

 

The people on this site can be such a hell and support.

 

pam x

 

 

Cruzita
Member

Re: Any triple negative survivors out there?

Sorry to hear that, I feel for you. I felt lump in April and just yesterday finally met with my doctors. Was told it is TNIDC. Possibly stage 3 with lymph nodes involvement. They won't know if it had spread until they do MRI, PET and CT scan scheduled next week. So more waiting it just seems that's all I have been doing all this time. My doctor said that it takes cancer years to develop and that a few weeks does not make a difference. So let's have faith in our Lord Jesus Christ. He will help us through this .
Dolly Dolly
Member

Re: Any triple negative survivors out there?

6 years out. Was diagnosed with  stage 3b with 13 out of 19 lymph nodes positive.  

Just take one day at a time.Think positive.

 

Jill1998
Community Champion

Re: Any triple negative survivors out there?

Hi Akshay,welcome to the forum.Very sorry to hear about your Mums diagnosis .There are ladies on the forum with bone mets who have been kept stable for years with medication but obviously everybody's situation and prognosis is very individual .Jill.
Akshay
Member

Re: Any triple negative survivors out there?

Hello everyone,


My mother is dx with TNBC with metastasis to the bones. Tumor of more than 5 cm in left breast and armpit.

I am totally depressed, don't know what to do. Everything seems to be over. 
Is there any cure for TNBC with 4th stage? Any survivors  with 4th Stage TNBC.
Any help would be appreciated.

9540JAYZ
Member

Re: Any triple negative survivors out there?

I am in remission as of March of this year.  Spending more time being in the moment and living life on purpose.  I have had chemo and radiation, completing my therapies as of November 23,2016.

Am hopeful that all will be well.

Theoldone
Member

Re: Any triple negative survivors out there?

I was dx with tnbc in 2006 and all has been well. I am currently having an investigation for an itchy patch on the good breast and am hopeful it will be ok though obviously anxious.

JaneH
Member

Re: Any triple negative survivors out there?

Hey there. I've just had my fourth year clear, and am back at my old job working in a developing nation. I was diagnosed at stage 3. I did chemo, radiation, had 2 separate mastectomies, a complete lymphedectomy on my right side and a hysterectomy.

i feel healthy and full of positivity. It all seems so far in the past now....and having survived all that, I feel grateful and full of optimism.

Its a difficult process....but there are moments of profound awareness and gratitude. 

I am not the person I was before. I'm better.

 

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Sheila b you are not alone were all here and some of us have finished active treatment and living normal lives again. Dont overthink the chemo too much because you may sail through it. What helped me was to just concentrate on each stage as it comes ie-: ops chemo rads.You will be surprised how quickly it all goes by and how strong you will become. Good luck on your journey you will be fine. Xx
sheilab 33
Member

Re: Any triple negative survivors out there?

Thank you Jill.i will.

Jill1998
Community Champion

Re: Any triple negative survivors out there?

Hi Sheila,welcomed to the forum .Please don't feel alone there are many ladies on this site who are triple negative and who I'm sure will be along shortly to offer some support .If you look at the going through treatment section of the site there are chemotherapy monthly threads where ladies going through chemo at same time can give each other support ,you also get advice from those much further down the line which is really helpful.Best wishes.Jill.
sheilab 33
Member

Re: Any triple negative survivors out there?

i have just been diagnosed with tnc.Had surgery..tumour under 2cm and not spread to lymph nodes.. I feel very alone at the minute and for my own sanity i will have to stop googling..I start chemo on 4th May..feeling very anxious about that but know i just have to get on with it.. Trying to remain upbeat.

Carmen1969
Member

Re: Any triple negative survivors out there?

Hi I'm tnbc with mastectomia I feel so good on Monday I will start 35 radiation we only need to be and keep so strong God love us
1852
Member

Re: Any triple negative survivors out there?

Hi Annie you sound very positive it's good your family are supportive too . Have a great holiday don't google anymore and come back from your holiday fighting fit .we are here if you need to sound off . I recommend you join forum for people starting in May 17 and there are forums for younger ladies as well . Take care DEN X

AnnieA
Member

Re: Any triple negative survivors out there?

Good morning all you beautiful ladies.
I'm Annie, diagnosed just recently with TNBC 31 years old. The saying ' you don't know how strong you are until it's the only choice you have ' is so true. I have 2 children 12 and 3. Telling my daughter was the hardest thing I've ever had to do so far in my life, but these gorgeous two and my husband give me all the strength I need to get through this. There's no negativity allowed in my house.
I've seen my oncologist and my treatment plan is 6 rounds of chemo followed by surgery. I'm not going to pretend I'm not scared I'm terrified but there's no other way out so I'm facing it head on! My chemo starts on 17th may right after I've enjoyed 2 weeks in the Florida sunshine with my family.
I also fell into the trap of googling, big mistake! There are positives and negatives to all diagnosis not just ours.
Strength comes from within, we can do this 💪 Xx
jhodges1210
Member

Re: Any triple negative survivors out there?

Hi,

I had a biopsy done on 2-1-17 and showed positive for TNBC-IDC.  Had surgery on 3-1-17, lumpectomy and 2 sentinel lymnph nodes were clean.  My tumor was smaller than 2cm. but not too much smaller.  I had my first chemo (Adriamycin & Cytoxan) on 3-20-17.  The side effects have been extremely challenging.  I got my chemo on Monday afternoon and was fairly okay until Wednesday afternoon.  I think I started having nausea sneak up on me and I was not taking the anti-nausea meds like I was supposed to, because I have a hard time taking Rx drugs because I have never had to before and I don't like putting bad stuff in my body.  So Wednesday afternoon and all day Thursday I felt pretty yucky.  You can keep in touch with your clinic and they can have you come in and they put fluids and medications in your body to help with side effects.  I have a port in my chest that they use.  Important to keep up with anti-nausea meds the first week after chemo.  Everyone is different and every day can be different.  But if you are feeling bad the clinic can often put things in you to make you feel much better.

Onwards and upwards
Member

Re: Any triple negative survivors out there?

Hi all  I was diagnosed with tnbc mid January and had left mx end of January tumor was 3cm no node or vascular involvement finally started chemo yesterday FecT  as a previous history of lung disease and further tests also went for a second opinion with Pro Justin Stebbings if anyone is concerned about their treatment I would thoroughly recommend him . I have not had any feelings of sickness as yet and no other side effects as yet but a bit of light headiness as this is the first day after chemo is it usually later in the process that she start

1852
Member

Re: Any triple negative survivors out there?

JBS your feelings are normal once you get treatment plan you will be able to think straighter everyone is different but we are all frightened at first and you will have good and not so good days but don't read negative posts it's like childbirth some people enjoy talking about the bad bits not the good bits .none of us wanted to be on this forum but we are so being positive is the way to go we are here and will help you if we can as. Pam says there are other forums to join good luck with your mri keep in touch DEN