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Any triple negative survivors out there?

Marina
Member

Re: Any triple negative survivors out there?

 
AnnDaw
Member

Re: Any triple negative survivors out there?

That makes sense Pam thanks. Do you just stay in hospital overnight if everything has gone to plan and what is the drain like because the setup I had for mastectomy was a pain in the neck. I'm meaning for the  clearance op that im dreading.xxx 

1852
Member

Re: Any triple negative survivors out there?

Hi pam sorry you have found another lump I posted on other forum that lump I found in good breast was cyst so hope yours is too . Hope hand prob gets sorted . I had to be monitored in hospital following acute chest pain waiting to see cardiologist but onwards and upwards take care X

Whitfield
Member

Re: Any triple negative survivors out there?

I was told after surgery,  Lump and nodes sent to lab.  I'm assuming you will be told after they have tested your nodes.  Mine turned into crystal like substance and the report said they couldn't find any viable cells.  Of course this is not a guarantee its gone but that is the best result we can get from chemo.  I'm wishing you the same result.

 

you will have to wait after surgery then ask for the report.  Approx two weeks waiting 😬

 

P x

AnnDaw
Member

Re: Any triple negative survivors out there?

Pam when will they tell me how I've responded im just going on the hunch that it will have destroyed every micro cell that may have been lurking or hiding.xxx 

AnnDaw
Member

Re: Any triple negative survivors out there?

It means Nottingham prognostic index. It's a tool used in medical world to get a idea of prognosis. You know the letters you get after consultation appointments saying what has been discussed it was on 1 of my letters and on my CT scan results so I googled NPI to see what it meant.xxx 

Whitfield
Member

Re: Any triple negative survivors out there?

Just looked at mine and I'm the same as you.  Grade 3' 4 nodes involved and 31mm tumour.mmthst said I had a complete pathology response which I'm told is very good.  Lets not think about the stats as this will do our heads in.

 

px

Whitfield
Member

Re: Any triple negative survivors out there?

Hi AnnDaw,

 

can an you let me know what NPI stands for?

 

I had chemo first so am different to you in the treatment process.

 

wishing you good luck x

 

px

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi again Pam, Abraxane does exactly same as other tax drugs and is normally used for treatment of advanced breast cancer and is very expensive so I have to ring hospital on day of chemo to tell them I am definitely turning up and well enough to go ahead with chemo.They won't make it up until they know you're coming. I haven't had any side effects from this drug except for neuropathy in fingers and toes and if this doesn't go away before next chemo triage nurse said they won't give it and will try another. I'm praying it will subside so I can get it over and done with Pam. I hope it's all worked but they have nothing to test on as tumour was taken away with boob and the reason I had chemo was because of node involvement which was found during sampling at time of mastectomy. I wish they had taken nodes at the same time. Breast nurse said this chemo is like a mop up. Pam do you know what you're NPI is as mine is 5.76 which I believe is quite high.xxx 

Whitfield
Member

Re: Any triple negative survivors out there?

Hello Ann,

 

I'm a bit down but suppose this is normal.  More importantly you seem to be unlucky with chemo taxol🙁  Your last chemo is in sight so wanted to wish you and send ❤️  

 

What is the drug Abraxane?  Did this seem to work for you? 

 

my appt is 1st April.

 

pam x

Whitfield
Member

Re: Any triple negative survivors out there?

Hello Bel,  thanks for post.  I know they're probably nothing but just worrying which I suppose is normal for us. I'm coping though.

 

pam x

bel
Member

Re: Any triple negative survivors out there?

Pam, best of luck with the appointment.

If it's any consolation I've had lumps picked up on MRI/ultrasound in the non-cancer breast a few times since my diagnosis 14 years ago. They weren't sure as to what they were & had to do needle biopsies etc. They were all fine though. Understandably, as we've all had BC, any lump is a cause for worry. But non cancerous breast cysts/lumps are probably more common than cancerous ones. x

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Pam I've not posted for a while but been reading yours and other posts.I should have had last chemo 9th March but was put back 3 weeks due to a virus and 2 allergic reactions to docetaxel which was very daunting. I had to go to city hospital Nottingham for Abraxane as it's not funded by my hospital. I have last dose of this chemo 1st April then node clearance on 28th April. It will be another hurdle jumped but really not looking forward to anc op but has to be done. You seem to be going through it a bit lately Pam are you ok or is it making you feel down in the dumps?xxx 

Whitfield
Member

Re: Any triple negative survivors out there?

Hope everyone is doing well?  I have another appointment at Royal Marsden for yet again another limp in breast that did not have cancer.  I'm hoping this is cyst.  I'm waiting to get the appointment but know that having TNCB it can come back 🙁

 

Have the the cyst removal date for hand again.  This operation had to be cancelled in 2014 because of cancer so am hoping to have this in April.  Loosing the feeling in this hand a lot now.

 

Missing my co tact with you guys.

 

Edita - not sure re your question?

 

Pam x

Edita
Member

Re: Any triple negative survivors out there?

Hi everybody. If somebody knows if immunotherapy can increase Ca 15-3?

CatherineJ
Member

Re: Any triple negative survivors out there?

Hi Iris, how are you now? I turned down chemo too, as no nodes involved.
CatherineJ
Member

Re: Any triple negative survivors out there?

Hi Chrissy, how are you now. My diagnosis and treatment is the same as yours, but I'm 49. Love to hear from you.
suzanne2
Member

Re: Any triple negative survivors out there?

Hi all hope you are doing ok, Catherine I drove to mine myself everyday it was 50 minute journey each way, I was tired tho. I also had skin breakdown but they gave me gel that really helped. Love to u all xxx
Whitfield
Member

Re: Any triple negative survivors out there?

Hi Catherine,

 

I got very tired from around 15 onwards, some skin breakdown under boob.  But I'm told the breakdown is more common in larger breasted ladies.  After 8 chemos, surgery I felt very drained but you may be fine.  See how it goes and ask for help when you need it.

 

good luck.

 

pam x

Gymnut
Member

Re: Any triple negative survivors out there?

Maybe I was lucky - but I had no significant side effects at all.  I work in the hospital and I just popped to radiotherapy, had my treatment, and then went back to work!  I think, on reflection that the skin on the effected side was left a bit shrunken and dimpled but no redness or other problems.  I drove myself to and from work each day (although not a long drive) without any problem.  I would suggest seeing how you feel personally. I have read of bad side effects - especially tiredness - but for me there was nothing really at all.  I managed to work full time with no effort - I was just relieved to get some semblance of normality back into my life! 

CatherineJ
Member

Re: Any triple negative survivors out there?

Thanks Pam. When did you start to feel any effects? I plan to drive myself week 1 but they tell me then I should get someone to drive me.
Whitfield
Member

Re: Any triple negative survivors out there?

Hi Catherine,  I had 20 rads and would say you need to drink ,it's and lots of water.  I'm heavier then you but know 20 is a lot.

 

good luck.

 

pam x

CatherineJ
Member

Re: Any triple negative survivors out there?

Hi, had my appt at The Christie Friday. Due to start 20 rads this Friday. Is anyone else starting around now?

They told me small boobs might mean less skin side effects but they are going to watch, as 20 is apparently a lot. I'll be 7 and half weeks post lumpectomy, and am 49.

Whitfield
Member

Re: Any triple negative survivors out there?

Thanks Bell I'll chase GP for regular tests. 

 

Pam x

bel
Member

Re: Any triple negative survivors out there?

Hi Pam,
My surgeon told me that it's important to keep vit d levels within range. I actually take quite a high dose - can't remember how much but it's a little bottle in liquid form by a make called biocare (I'm sure you can find online) and i take their recommended daily dose. I get my levels checked each year at the GP - I asked them for this - it's important of course not to go over the recommended nhs levels too as this can be toxic. While my levels have been good ever since I started supplementing they have yet to go over. Good luck.
Bel x

Sue123
Member

Re: Any triple negative survivors out there?

Hi Pam, I too was low on vitamin D, turns out a lot of women with BC are low so now I take a cod liver oil capsule each day which provides 100 percent of the daily needs. BTW I am triple neg too, Sue x

Whitfield
Member

Re: Any triple negative survivors out there?

Yes, I would.i,e to know more about vits.  I asked GP for vIt D but he refused.im low on that.  Live in UK and wondered what I should look out for and ask for?

 

Pam x

myliljaiden
Member

Re: Any triple negative survivors out there?

I am from NY...diagnosed triple negative in August/2015. I had double mastectomy with 8 rounds of chemo. I just did my breast reconstruction but fear recurrence. I was wondering how does going for Vitamin C infusion. Do I have to live there or need a doctor or can I just go and request it?
CatherineJ
Member

Re: Any triple negative survivors out there?

Thanks Pam and JJL, as well. Still feel ok with my decision. I've done lots of research, and at least if it comes back, I still have chemo in reserve. There are so many variations for all of us, and lots of options. Keep positive and always ask lots of questions, that would be my advice. I'll let you know how the 20 rads go.
Ps. Turmeric / cur cumin keeps coming up as a powerful antioxidant against cancer too. And broccoli every day!
JJL
Member

Re: Any triple negative survivors out there?

Hi Catherine.  Like you said it's a personal decision and I strongly encourage women to ask questions and research. I was diagnosed over a year ago with Braca1 and not one breast tumor but 2. Left triple negative and right her2 positive. 2cm and TNBC over 1 clear nodes. It was highly recommended to have double mastectomy chemo rad and herceptin. I decided to do the surgery and that's it.  It will be one year since my surgery on April 17 since then every week and get vit C and mistletoe intravenously I take very high doses of longa curcumin, vitd3 high dose, grape seed extract. I run every 3days 2.5 km and juice it with organic every day. Last month I requested ultrasound under both armpits (I recommend ladies to ask for this test every 4 months). I found out one lymph node had cancer. It's localized and I'm not so worried about it right now. I also been doing some blood test every 2 to 3 months called maintrac to check level of circulating tumor cells in my blood and since October last year the level dropped by 10 fold. Of course the doctors now want to rush me in for surgery.  chasing cancer with surgery is not always the answer and having this surgery will not minimize it to metastasize - I have cancer, my blood test proves it. So my game is risky but I've made the decision to live with cancer but I control it right now and not I'm not letting the cancer cells find a perfect environment to attach itself to one of my organ. And if it does one day I will adjust my plan.  But for now I've been living great, I feel wonderful.  Don't get me wrong I worry but this is my life.  Julie. All you women are strong and beautiful. Xo

 

 

Whitfield
Member

Re: Any triple negative survivors out there?

Hello Catherine,

 

sorry you you are here.  I think the doctors would have pushed you if they thought you were making the wrong decision.  Chemo is hard and in itself can cause cancer.  We have to make our own decisions based on the info we have.  I had no choice as my cancer had spread to under arm nodes with main tumour being 31mm.  Four nodes were positive so I had to have full clearance and chemo to the to stop any cells in their tracks before they set seed elsewhere.  

 

Im told broccoli is a good anti cancer veg, exercise is also very important as is keeping weight down.  Recently at the Royal Mardsen they said exercise can stop reoccurrence of some cancers by 40 percent.  

 

Being TNBC is very scary but we can still live while we're here.

 

sending love.

 

pam x

CatherineJ
Member

Re: Any triple negative survivors out there?

Thank you. I've just been reading about Foods to Whop Triple Negative Cancer but can't give up red wine totally!) and am still happy with my decision. Just have one friend who tells me she thinks I'm wrong. Mostly, I'm ok but like all you lovely ladies out there, there are moment when fear grips me. Learning to try to push it away. Reiki helps. x
Gymnut
Member

Re: Any triple negative survivors out there?

Hi Catherine

 

I am glad my post helped.  Like you, I felt quite alone and many people thought I was mad to decline treatment.  My oncologist was very helpful in explaining that everyone handles the disease in a different way.  Some ladies throw everything possible at the disease as they feel if they didn't and it returned they wouldn't be able to live with their decision.  

 

I am confident that I can live with my decision - in my head it just made sense.  The medical profession are great ones for following protocols (I know, I've worked with them for years) but they don't always work.  We are human after all, and to me chemo is such a drastic treatment that to undergo it just as a 'precaution ' didn't sit well with me.  Don't get me wrong, if there had been any evidence of spread I would have done anything necessary.

 

Remember - we have done nothing to 'catch' this disease - it is totally indiscriminate - random.  You can't believe what you read in the press!  Not a day goes by when you don't see a story suggesting that some item of food is to blame - it makes me angry that people are truly led to believe that it is their fault they got cancer.  Don't let it get you down.  Be strong, believe in yourself and trust you made the right decision for YOU 😊

Julie (aka gymnut)

CatherineJ
Member

Re: Any triple negative survivors out there?

Dearest Gymnut, your reply has meant more to me than you will ever know. I understand everyone is different, but just to hear from someone in a similar situation has been a lovely boost this morning. A big thank you. And good luck to everyone fighting this cancer which comes out of no-where and truly shocks us all. xx
Gymnut
Member

Re: Any triple negative survivors out there?

Hi Catherine

 

I am sorry you have had to join us on this forum but for what little comfort it may offer I made a similar decision to your own. I was diagnosed in Dec 2013.  1.5cm tumour stage 1, grade 3 with no nodes involved.  I had WLE which showed some DCIS so underwent a second surgery to remove that too.  After much research and lots of discussion with friends (medical and other) decided to decline chemo.  The treatment is harsh and it can bring health problems of its own.  The side effects of undergoing treatment were a certainty whereas the benefits were not.  In my mind there was no evidence the cancer had spread and therefore why subject my body to chemo on the off chance a stray cell or two had moved away from the tumour site?  People put themselves through chemo and still experience a recurrence.  I decided that I could live with a decision to decline and that is exactly what I have done.  No remorse and (I have sworn to myself) and no recriminations.  

 

I am now 2 years post diagnosis.  I have had some reconstruction (lipomodelling) and just had a second clear mammogram.  Although I will never be able to put my diagnosis out of my mind I try not to let it rule my life.  I still enjoy a glass of wine, use my normal toiletries, and eat healthily but without being paranoid about organic etc.  I just intend to make the most of every day.

 

I feel this terrible disease is indiscriminate - there is so little known about causes ... or cures.  Some people lead exemplary lives and still fall foul yet others break every rule in the book and sail through life with no health issues. 

 

We each have to make our own choices. The medical profession can only advise to a point but at the end of the day it is your life.

 

My thoughts are very personal to me and will certainly not suit everyone.  You have been brave enough to go with you gut instinct so far ....... I would say stick with it 🙂 X

CatherineJ
Member

Re: Any triple negative survivors out there?

Hello everyone

Just been reading your posts and you all sound so positive and upbeat, and incredibly brave.

Not sure what you're all going to make of my decision though - diagnosed in Dec 2015 - my tumour was 6mm, with 5 nodes taken which were clean, and got clear WLE. They told me 3mm of it went up the biopsy needles and 3mm was cut out at surgery.

Anyway, because it was so small, I've done loads of research and weighed up everything I can find about TNBC, and just made the decision to turn chemo down.  I'm having 20 rads starting next week instead.  

My breast care nurse said it was a really tough decision as my tumour was so small when found - and some oncologists seem to think chemo carries too many risks to have it with such a small tumour.  I'm praying they're right.  

I also had a lower left lobectomy (lung) removed 12 years ago for a 'carcinoid' tumour which is unrelated.  So upshot is, I'm trying to listen to my body, eat healthily, and pray that I've made the right decision.  If it comes back in either boob, I'll worry about that then.  Life is short so am taking it a couple of days at a time now and keeping positive.  So far, I'm happy that I've made the right decision for me.  Would love to hear from anyone who has done the same?? Keep going ladies. xx

Whitfield
Member

Re: Any triple negative survivors out there?

Thanks for support guys.  Scan next week as raised ATL readings.  Hand operation pending and waiting for pain management clinic to send appointment.

 

love and hugs back.

 

pxxx

Amanda10
Member

Re: Any triple negative survivors out there?

Hi everyone
So sorry you have got this worry Pam. Hoping it turns out to be nothing serious, it's a constant worry for us all every ache and pain that we wouldn't have even thought twice about before. Sending you hugs.
Amanda xxx
1852
Member

Re: Any triple negative survivors out there?

Hi pam sorry to hear you are going through it again hope scan goes ok and lump turns out to be nothing pm me if you want X DEN 💐💗

suzanne2
Member

Re: Any triple negative survivors out there?

Aww Pam I'm really sorry to hear that u r struggling, why are they doing a liver scan? God willing all will be ok with the scan and the lump under your arm xxxx
Whitfield
Member

Re: Any triple negative survivors out there?

Hello Suzanne,

 

im not great.  Have breast lymphodema, waiting for hand op, liver scan and now just found lump under non cancer arm.  I'm strugglyi g with it all.

 

pam x

suzanne2
Member

Re: Any triple negative survivors out there?

Hi all how are you all doing, good I hope xxxx
1852
Member

Re: Any triple negative survivors out there?

Hi AnnDaw  I went through treatment end14beg15 I got thrush on doxitaxil both oral and where the sun don't shine so you have my sympathy Pam how are you ? I had u/s       Today on remaining breast after myself and onc found lump but it's only a couple of cysts worry never far away is it hope all ok DEN X

suzanne2
Member

Re: Any triple negative survivors out there?

Hi all hope you are all ok,pam how are u xx
1852
Member

Re: Any triple negative survivors out there?

Sorry you are feeling low pam how is fitness I am hit and miss weather as not helped still need to lose some weight . Why do you feel its inflammatory b/c . What do you take for past n I take tramadol at night but try to manage during day take care DEN X

Whitfield
Member

Re: Any triple negative survivors out there?

Yes the mode clearance gives you more issues to think about.  I found removal very painful and now this. Mi thin the hospital are being cautious, that said I said to them ages ago this looks like imflammatory breast cancer to me.  I have lumps and bumps, pain, lost of movement.  A trapped nerve which is now okish and not this swelling.  What with the treatment which was very harsh, two hospitalisation, home injections and two other minor operations I'm very low.

 

pam x 

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Suzanne so pleased you've had a good result. Stop worrying now and look forward to the year ahead. Keep popping in for us rookies won't you I'll be looking for good advice in a couple of months when next step comes along.xx 

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Pam I've just been reading your posts and sounds like you're in some discomfort. When I've finished chemo I'm supposed to have the node clearance and the more I hear the more I don't want to have it done. Why is it so necessary after chemo and I've had mastectomy plus ct scan was clear. When it gets nearer to time I'll give it more thought. How long do you have to stay in hospital after its done? I'm just starting to get through 1st docetaxel and I've took a battering and dreading next cycle already. I thought I was tough until this. I hope you feel better soon seems like we can't ever settle back into a normal life and I don't think I want to spend mine worrying about cancer coming back. I'm sounding negative I know but on a bit of a downer at the moment maybe because of the chemo. I hope your pain soon goes away Pam.xx

1852
Member

Re: Any triple negative survivors out there?

Hi pam never ending isn't it I have to go for u/s of left breast next wed found lump onc says he doesn't think it's anything hing to worry about but although I am trying not to worry it's at the back of your mind . Hope swelling goes down soon and  you are more comfortable take care 💝

Whitfield
Member

Re: Any triple negative survivors out there?

Thanks everyone.  I'm in bed with bra and corrugated piece of foam in bra.  Looked at boob earlier and it's got massive dents in it where the foam is pressing.  I had lumptecomy and it's the remai I g Brest tissue that seems to hav this fluid build up.   Sore.  😢

 

I hate cancer 😢 

Px