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Any triple negative survivors out there?

Whitfield
Member

Re: Any triple negative survivors out there?

Marina, You are beautiful to me.  My hair came back white and curly.  Now salt and pepper.

 

counselling helped me.

 

px

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi Marina,

So sorry to read you feel do dejected. Do you have any opportunity to get some counselling? It may be of great help. Or perhaps ring the helpline 0808 800 6000 for some support?

If you are so unhappy about your hair - this link may be of help

http://cancerhaircare.com/page/colouring-new-hair-growth/77

Huge Hug

Sue xx

 

1852
Member

Re: Any triple negative survivors out there?

Great news warcol 👍
Marina sorry to read your posts
Hope you have someone besides your partner we are all here for you 🎀
netti37
Member

Re: Any triple negative survivors out there?

Warcol, so so pleased for you. I've been following some of your posts. What excellent and positive news. Xx
Warcol
Member

Re: Any triple negative survivors out there?

Hi ladies
I too was massively affected by Jinny's passing and was feeling very negative but to give u all hope and some good news I've just come from the hospital to be told I've had a total response to chemo and there's no evidence of any cancer! U can all do this xx
Taran
Member

Re: Any triple negative survivors out there?

Oh Marina, your post makes me so sad. Please don't feel alone. I know it is not the same as having someone put their arms around you, but please know there are lots of people on here who will listen to you and offer support as you need it. I am still early days as only have my 2nd chemo next week, but if I can help in anyway please get in touch. Sending lots of love xxx and I'm sure you are just beautiful no matter what colour your hair is growing back!!xx
Marina
Member

Re: Any triple negative survivors out there?

Hello ladies,

 

Sue H-S do I take it then you don´t have TN cancer?

Pam you do seem to be gong through a lot, do you have support?

I am so lonely and feel no one supports me. My partner took me to and from chemo but that is it. He couldn´t even hug me when I cryed, wouldn´t prepare food etc etc. And the thing is he actually thinks he is doing it all brilliantly. I have moved into the spare room which is more like a box/storage room and just feel overwhelmed by everything. Not coping. Feel so ugly with my white (wasn´t before chemo) hair regrowth and wonder if I leave him will anyione ever love me.

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi Whitfield,

When anyone of us does not make it through it is so very diffcult.

I never new Jinny, but found her posts to get to know her that way - a little.

She was such a brave lady and by all accounts her last post was on 26th June in the Tn secondries thread.

It was sad to read, but also highlighted some challenges most of us face, once active treatment is over.

Lets hope we all find the courage and strength to voice our concerns and really push for the right treatment for us.

Hugs

Sue xxx

 

Whitfield
Member

Re: Any triple negative survivors out there?

Thanks for the post Sue.

 

what I know is TNCB reoccurrence rate is at its highest in the first 18 months after treatment.  I was told having a complete medical response to chemo this reduces my percentage levels but the hospital were keen not to give me any info as I think the prognosis was poor as I had nodes with cancer in them.

 

we know it can be bad for just about anyone but a friend (Jinny) dying so suddenly seems to have scared us all.

 

all we can do sup port each other and where possible help research.  I gave blood and bits of my tumour during treatment for a trial.  This will hopefully will benefit those following me down this dark alley. 

 

Pam x

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi ladies,

I really do understand that you are scared. It is known that a TN breast cancer can be challenging to treat. But it can be treated.

I am by no means a medical person and a friend of mine has recently been diagnosed with a TN breast cancer - so I have been doing a lot of reading and researching.

There is much knowledge out there, why a breast cancer may metastasis. That is why we are given chemo and the different types of chemo- so that rouge cells, which may be on the way to another organ or be in our system, get killed off.

Those who have positive receptors, as you may know - have specific treatments to ensure that - should there be a cell left after treatment - it cannot 'feed' on what may make it grow. If that follow up specific treatment is not taken - then a receptor positive cancer can reocurr, as the elements it 'feeds' on may turn healthy cells into cancer cells again and it may be in a different part of the body.

It is may be more challenging with a TN cancer. And there are successes out there, but as you may appreciate I rather not quote the figures, as they generalise and the latest I could find were from 2007. In general terms in 2007 the difference of a positive outcome over 5 years was 20% between a TN diagnosis and a positive receptor diagnosis. 

We are now 9 years further down the line!

Your oncologist can advise you of your percentages, if you want to know.

It has to be said that research to encourage ones own immune system to destroy any cells it ongoing on a very urgent basis. You may have heard about immuno therapy and there are a number of trials currently ongoing to find out how effective it is for a TN diagnosis.

Hugs

Sue xxx

 

 

suzanne2
Member

Re: Any triple negative survivors out there?

So scared Pam, xxx
Whitfield
Member

Re: Any triple negative survivors out there?

Yes, Jinny passing sent me into a tailspin.  As you say Marina people just do know if we're gonna be okay or not so it's annoying when you hear things like ....the treatment is so much more advanced.  We just don't know if it's gonna be you, me or another who dies.

 

ive just returned from the Marsden as I found a new lump which added to my tailspin.  I'm told it's okay and scaring from surgery and rads.  The lump is now noticeable as I'm clearing the lymphodeama fluid, plus I now seem to have dent in noon where the tumour was.  You do hope they've got it right.

 

pam s

Marina
Member

Re: Any triple negative survivors out there?

I´m OK thanks Suzanne, had the drainage removed today which hurt like hell but otherwise OK.

Yes it is all pretty frightening isn´t it, and I´m so sick of people saying that nowadays everything is so much more advanced and I´ll be fine. In general until it happens to you, you dont know anything about it. I didn´t even realise there were various types of breast cancer before. I personally don´t think the doctors/oncologists etc have a clue, they don´t understand how cancer works and why it metastasizes. Anyway thats my rant!! I´m eating healthily which is about as much as we can do. Need to excercise more though.

Hope everyone is well and coping.

Marina

suzanne2
Member

Re: Any triple negative survivors out there?

Hi marina how are you? How is everyone else doing? Weather is so depressing, I'm due to go away soon but am starting to panic in case I'm ill and dreading the flight!! Jinny dying has knocked me, I also lost a close friend 2 weeks ago from lymphoma, Hard isn't it xxxxxx
Marina
Member

Re: Any triple negative survivors out there?

Bernadetteh I follow

CHRIS BEAT CANCER

KRIS CARR

THE TRUTH ABOUT CANCER

all offer helpful advice and recipes etc.

Marina

Marina
Member

Re: Any triple negative survivors out there?

Hello ALL,

I can´t believe how this tread has picked up since I last logged on. There are so many of you that I am now lost with who is who. For some reason I can´t get to be notified automatically when someone posts like I used to.

So sorry about Jinny, it really brings it all home. I think it was only a few months ago she said she was NED, or am I confusing people. RIP Jinny.

I am having an operation tomorrow, 3 lumps that appeared during chemo which I finished 4 weeks ago. They say the lumps are not cancerous but a reaction from my original op, maybe lymphatic fluid build-up. To be honest no one could really confirm what they were!!!????? A bit worrying but I´ll be glad to have them out and analysed. Feeling a little nervous and tearful today.

Bernadetteh - when I asked how you were a few months ago I was actually confusing you with Tiffany (tiff71) who so inspired me with her juicing etc. Now I remember that it was you who I tried to send a link to as you said you could not do chemo. I will post again straight after this with who I follow re. alternatives to chemo(in case they get deleted again).

Keep up the good work ladies.

Marina

Warcol
Member

Re: Any triple negative survivors out there?

Such sad news! 😒 RIP Jinny xx
1852
Member

Re: Any triple negative survivors out there?

Sorry to hear sad news . Rip jinny

AnnDaw
Member

Re: Any triple negative survivors out there?

Oh Suzanne such sad news. When you read posts from familiar names you don't see this coming do you. What age was Jinny do you know? Condolences to her family. From her last post seems like something was missed along the way. It's really hard to know what to say other than Jinny is in our thoughts. R.I.P Lovely Lady. Xxx 

Whitfield
Member

Re: Any triple negative survivors out there?

Just can't take it in.  We chatted on the site many times and it seems so unfair and unreal.  

 

Pam 

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi suzanne2,

such sad news to hear. 

I have read some of her postings - a brave lady

You might wish to post a dedication to her on this thread - 

https://forum.breastcancercare.org.uk/t5/Dedications-and-remembering/ct-p/in_memore

 

so otheres, who know her can leave some messages and thoughts.

                                     Slide7.JPG

Hug

Sue xxx

 

Amanda10
Member

Re: Any triple negative survivors out there?

 
suzanne2
Member

Re: Any triple negative survivors out there?

It is with great sadness that I tel u Jinny passed away this morning, so so sad xxxxxx
keydieselsgirl
Member

Re: Any triple negative survivors out there?

Note to self. Lol check the date before replying. Pam Whitfield. That was one of your post. Slap my wrist lol. Sorry about that.
Pam xx
keydieselsgirl
Member

Re: Any triple negative survivors out there?

Hi Pam.
Sorry to hear your not to good today. I will be thinking of you this week.
I am only just one and a half weeks into my chemo and had my first visit to a&e. I thought I had got a throat infection. Was tender, but also had pain in my back. Turns out it was kidney infection. On antibiotics now. Keep your spirits up. Xxx pam
Warcol
Member

Re: Any triple negative survivors out there?

Hi katydaw

i had an allergic reaction to my chemo on Monday but luckily 2nd time round managed to get it in, don't worry just keep your chin up and once your white cells are back up you will be good to go xx Colista xx

Katydaw
Member

Re: Any triple negative survivors out there?

Chemo not chemistry!
Katydaw
Member

Re: Any triple negative survivors out there?

Arggh can't have my weekly taxol today as white blood cell count too low. Strange as I feel fine, apart from being tired. I'm panicking that the cancer cells will be on the rampage but the chemo nurse assures me that the previous chemistry are still working in my system. Hope so. Have the injections for 3 days now to boost white blood count xx
AngeNut
Member

Re: Any triple negative survivors out there?

I thought I'd commented on this photo, but can't see my post. 

I just want to say that I think this lady is BEAUTIFUL and BRAVE! 😍

Katydaw
Member

Re: Any triple negative survivors out there?

Hi Taran it was ok thanks apart from knowing your brain is being scanned which is weird and scary. Results on Monday. Hoping all is ok. Enjoy your boys' carnival. It's lovely and sunny here, hope it is for you too. Glad your little girl is doing well and getting big. I'm sure my little man is having a growth spurt at the moment, he's bursting out of all of his sleep suits! There's an annual funfair here in a big park just down the road from us today so taking my little girl who's so excited about all the rides! Xx
Taran
Member

Re: Any triple negative survivors out there?

Hi Katy, how did you find the brain scan? Hope it was ok for you. When do you get the results? It's nice to get out and do normal things like taking your children to the park isn't it. It's so easy to get so caught up in tests, hospital visits, treatment etc that we forget what it's like to be "normal". Today is my boys' school summer carnival. Really looking forward to it and hoping it stays dry! My baby girl is doing great. Really growing now. I still haven't started chemo yet. Had my bloods and signed the consent yesterday and starting Tuesday. Think I'm as ready as I can be.

Ann, congratulations on your new granddaughter! I bet she looks like a little doll being so small! So glad to hear she is doing well.

Hope everyone else is ok too xx
Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hello ladies,

Just wanted to share this picture with you. It is of a lady I breifly met at my breast care centre, whilst waiting to be called into my oncologist appointment - This lady is a Triple - has completed her active treatment  and is sporting the most amazing re grow hairdo I have ever seen - body glitter rubbed over the scalp to hide the irregular regrowth!

                             Tripple_ Lady.jpg

 

Hugs

Sue xxx

 

 

Katydaw
Member

Re: Any triple negative survivors out there?

Hi Taran, Sue, Ann and everyone else. Thanks for the kind messages. I am feeling a bit better thanks. Little man is doing great thanks and my little girl just adores him. I think they're going to be best friends! He has smiled once but only for her! Took them both to the park this morning in the sunshine which was nice. I'm now at hospital for a brain scan which is not so nice. Have only just got round to sorting it as I couldn't have it while pregnant. I don't think it's the norm to have one but I'm so paranoid I requested one. Hope it is all ok. Taran how are your little ones? Have you had your first chemo yet? Ann congratulations on your new granddaughter. What a lovely name and glad she is doing well after a difficult start. Sue you seem like such a lovely supportive person trying your best to help others when you are going through it too. In fact everyone I've come across seems lovely, just makes you feel this should be happening to the horrible people of the world, not normal, kind and loving women xxx
AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Katy I've been looking for your posts and wondering how your getting on. I hope your side effects are few and mild. How is your new little man? They grow so quickly and I bet your little girl makes a fuss of him. I've got a new step grandaughter called Annabella she's 2 weeks old. She had to be delivered early by cesarean as she has a hole in the heart and will have a operation later. 4 and a half pounds born and now 5 lbs 6oz goodness knows what mum is feeding her on. She was in Glenfield hospital Leicester but was doing so well they let her come home.It just goes to show how tough and resilient we all are big or small and you are strong too I feel it.xxx

 

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi again Katydaw,

So understandable that you do not feel to sociable and that you are struggling - it is a challenging time. And it is a lot to come to terms with. Sometimes it is not just about being sociable, but also to read how ladies are getting through their treatments and a place where you can moan, groan and cry - so many virtual hands will reach out for you.

You would also be able to see how the chemo affects individual women. There are quite a few 'Tripples' on the June Starters thread. I have recently started the July starters thread, although my first chemo was in the middle of May. The May thread is a bit, well boring, lol, sorry if a May thread lady reads this. So I joined the June thread - and being a little  ahead, can support those, who are starting to go through the experience and try to reassure them,as well as sharing some tips of things I found helpful.

I am on my second FEC chemo with number 3 due on the 30th. I am on so many threads, lol - as I try and support those, who struggle a little bit. 

How long ago were you diagnosed?

Hug

Sue xxx

Warcol
Member

Re: Any triple negative survivors out there?

Hi all

Went to see oncologist today. All went well! Going to reduce chemo by 5% so no detrimental impact! Got antibiotics for thrush just in case I get it again plus meds for toilet issues! Surgery is planned for approx 5th sept. MRI being booked hopefully before 14th July to see if this critter has shrunk!! 

Katy I echo joining a thread, I've had laughs and great advice from all the ladies on them. U r not alone and any worries, concerns or rants their of plenty of women to support and listen xxxx

Taran
Member

Re: Any triple negative survivors out there?

Hi Katy, how are you getting on with it all now? Do you feel more positive now chemo is started or are you still struggling? You should come and join us on the June thread, everyone is very lovely and very supportive. You don't have to be sociable if you don't feel up to it, but knowing everyone is there is such a help xx
Katydaw
Member

Re: Any triple negative survivors out there?

Hi Sue

I'm having weekly paclitaxol at the moment so have just done my fifth week. I'm having 12 of these I think then 3 or 4 FEC. I haven't joined a chemo thread as yet. I've been struggling with the whole thing a bit to be honest and haven't felt too sociable. How about you? Xx
Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi Katdaw

how far are you through your chemo? Have you joined a monthly chemo thread yet? They really are so helpful - and actually quite fun, too.

Hugs

Suexx

Katydaw
Member

Re: Any triple negative survivors out there?

Hi Den glad all went well with your tests. Xx
1852
Member

Re: Any triple negative survivors out there?

Hi everyone just had colonoscopy today some polyps taken but dr said they looked ok she also gave me result of u/s it was fine just mammogram in a couple of weeks to go but I am breathing a bit better now hope all feeling ok today 💐DEN

Katydaw
Member

Re: Any triple negative survivors out there?

How is everyone today? I'm feeling tired, chemo yesterday. Sending love. Katy xx
keydieselsgirl
Member

Re: Any triple negative survivors out there?

 
1852
Member

Re: Any triple negative survivors out there?

Don't know what's happened when I posted it DEN
1852
Member

Re: Any triple negative survivors out there?


@Whitfield wrote:

Like Den I'm flabbergasted at how many of you are so young with small children.  It's so unfair.  Take all the help you can get and of course keep posting.

 

Den - How's things with you and hubby?  I'm going to pain management now and keeping on top of the breast lympodema. Pain management tomorrow.  Hand recovering now as well.

 

pam x



Hi pam hubby ok thanks I have had ct scan today having yearly colonoscopy on Thursday mammogram due week after next . Dr as referred me to specialist physio for problem with arm so a bit of stressful time waiting for tests and results glad you are getting pain under control take care 💐

1852
Member

Re: Any triple negative survivors out there?

Hi pam hubby ok thanks I have had ct scan today having yearly colonoscopy on Thursday mammogram due week after next . Dr as referred me to specialist physio for problem with arm so a bit of stressful time waiting for tests and results glad you are getting pain under control take care 💐

Whitfield
Member

Re: Any triple negative survivors out there?

Like Den I'm flabbergasted at how many of you are so young with small children.  It's so unfair.  Take all the help you can get and of course keep posting.

 

Den - How's things with you and hubby?  I'm going to pain management now and keeping on top of the breast lympodema. Pain management tomorrow.  Hand recovering now as well.

 

pam x

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi all,

just to make you aware

 

Should you start Chemo in June

this is the link to the monthly thread

https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/July-2016-starters/m-p/1026259...

and should it be July the new thread is here

https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/July-2016-starters/m-p/1026259...

and should you require some tips and tricks

https://forum.breastcancercare.org.uk/t5/Chemotherapy/Chemotherapy-Tips-and-Tricks/m-p/1026233#M1324...

 

Lots of support, shared stories, questions answered, a laugh or two - as well as a cry or two.

 

Hugs

Sue xxx

1852
Member

Re: Any triple negative survivors out there?

Hi I can't believe how many of you just starting this horrible journey are  young mums of very small children I just wanted to say hope you all have an easy journey take care of yourselves accept all the help you are offered xxDEN

Katydaw
Member

Re: Any triple negative survivors out there?

Exactly Taran. Let's hope for many more years to make up for this hideous one though xx