Any triple negative survivors out there?

[Whitfield]

Hello JBS,

You are not alone and some people do survive this.  I'm two years in remission and Bel on this site is 15 yrs.  There is part of this site for people just like me and young mums.  You may want to join that part as well.

good luck

pam x. UK

[Whitfield]

Hello Wiliams500,

You will need to listen to your body.  I had a really bad with sickness, hospitalisation during chemo for sepsis.  Then an emergency operation to remove infected cyst.  You need to keep clear of bugs so you need a plan if carrying in working.  This can be agreed with your employer as you are now covered by the disability rights act (if you live in U.K.). You may need to work ffrom home if possible.

As A says this is doable but we are all different.  I know if people losing nails during Taxol but to prevent this paint nails dark shade as this helps.

I couldn't work during treatment as I was just too ill.  That said in I'm my late 50s and that may account for that.  I was extremely well before diagnosis and it came as real shock so one can look and feel well but have cancer.

maybe you could set out a plan A and plan B with employer.  Your GP will sign you off sick if you can't go to work and remember Doctors receptions are full of sick people with bug.  So insist you wait in a private area or ask for first appoint of day.

some people sail thrust and some don't.  This will not affect your outcome but you and those around you need to understand things can change suddenly if you get unwell.

The hospital where you are being treated should give you information about needed A&E services as you will need to skip to front of que if unwell as your immunity will be low at times.  Hence my getting sepsis.

good luck with treatment.  You can do this with support.

pam x

[JustBeStill]

Hello all,

I was just diagnosed TNBC IDC a few days ago.  I've been scared out of my mind, especially when I get to looking at stuff online about it.  I'm 39 with 3 beautiful little girls, which is making it so much harder worrying about their future and how they'll be so scared when they find out.  I can't stop my mind from racing around, thinking I have cancer everywhere, and that I'll be back every year for reoccurence.  MRI is tomorrow.  Haven't eaten or slept decently since the first doctor said, "yup, that lump feels like cancer" a few weeks ago.

I just wanted to tell you that this forum has been so helpful to just read.  You are an amazing group of women that are flowing with this whole thing so well.  I'm in the US, but the local forums are just freaking me out with all of the bad news.  Thank you for keeping the positive attitudes going here.  There are people like me who are reading this, trying to get a grasp on their new reality, and are still too afraid to step out and join a community.  Please keep as much good news coming as possible.  I know I'm going to need all of the positive news I can get. 

[AnnDaw]

Hi Williams 500. We are all different in the way we are during chemo. I had 6 FEC-T and carried on quite normally. Whilst on the FEC I found I felt tired and got thrush in mouth and a metallic taste which made me unable to taste food.  The steroids I took for a couple of days before chemo and 2 days following chemo were a problem because I couldn't sleep. You'll probably find yourself posting on here at stupid o'clock for this reason. I also felt emotional for 2 days after finishing the steroids. I never had to take the sickness meds but got mild indigestion. Whatever s effects you get there is a remedy. You need to drink lots of water before during and after chemo as this flushes the toxins out. When I was on the T part of chemo I had the dreaded allergic reaction so had to go to another hospital for Abraxane as this drug wasn't funded by my hospital. I had a side effect called peripheral neuropathy which you might need to Google. My finger and toe nails lifted but I am almost a year post chemo and these have fully recovered. There is of course the hair loss which was the worst part for me but this like everything is temporary. To sum up it was all very doable and I still did normal  things on a daily basis. Remember your experience will be unique to you but you will hack it. It will help to join the chemo monthly threads with people who are doing this with you. You will share very useful information and tips to combat side effects and make friends along the way. I didn't work through my b/c journey as it was mastectomy then chemo followed by node clearance then rads. I was off work for a year with pay so had lots of good recovery time. I've been back at work since last September and loving it. You will get through this and it may be easier than you are thinking and the time flies by you will see. I hope this helps you to see this is very doable and I wish you well Williams 500. Anne xx. 

[Williams500]

Hi, thanks for all the positive replies, I am having a lumpectomy and lymph node biopsy in just under 2 weeks and then the plan I chemo which is the part that scares me as at the moment I don't feel ill at all. My bcn said that people can function whilst having it but was after some realistic views on what that means? How do people feel day to day whilst having the treatment? Is it worse in the few days straight after and then gets better? x

[RuthElisabeth]

Hi Vicki. Thanks for the tips. My GP prescribed cyclizine and this has helped. The nurse told me it builds up over time as well. My chemo was Tuesday and have finally felt a bit more normal today so hopefully it is wearing off now. Even enjoyed my Mothers Day lunch with my girls. At least I will know the pattern for my second cycle now and can plan a bit accordingly. It's a whole new world but I am finding this site great for support and tips! X

[1852]

We are pam this is second grandson since diagnosis so two I never thought I would see feel very lucky and grateful for everyday I have with them DEN

[Whitfield]

How lovely Den.  You must be over the moon.  Px

[1852]

hope all have a good as they can Mother's Day I am happy grandparent  we got presented with another grandson this weekend we are so lucky X🍼

[Vics1972]

Ok great will do 👍🏻

[Whitfield]

Vics1972,

Ask for Emend. It's expensive but worked for me.  I heard ginger is also helpful.  How many more chemo do you have to go?

pam x

[Vics1972]

Hi sorry to hear you've been suffering with the nausea I do too (had 3 chemos now) ondansetron hasn't been effective for me but Cyclizine helps and if desperate Levomapromazine.
The longer you get from having the chemo hopefully the better you'll feel 👍🏻
All the best Vicki
(TNBC diagnosed Dec. 2016)

[Orange29]

Thanks Pam. That sounds hopeful. Think I was having a down day when I wrote x

[Whitfield]

Hello Orange,

The time frame for surgery matches with the period I had to wait.  

Pam x

[Whitfield]

Hello Orange,

Below are the platinum based chemo drugs that I've found on line.  I'm not sure what you are on at the moment but it's worth while discussing with your oncologist team if any of these would benefit you.  I'm no expert but it worth the discussion. Also you might want to see if there are any trails you could be part of.  That's  if you interested in this avenue.

I know my cancer had spread to the nodes and one was nearly as big as the main tumour and I'm here two years post surgery.  Wish you well....

Here is the list -  Pam x

cisplatin.
Carboplatin.
Oxaliplatin.

[Orange29]

Thanks. Have to wait 3 to 4 weeks for surgery, as due to chemo, they're concerned that wound won't heal.

[Whitfield]

Hello Orange,

Mine was also 3.5 cm or thereabouts.  Grade three and in lymph nodes.  I had chemo first, then surgery and just passed two years since op.  Four nodes out of 24 had cancer.  I had good epresonse to chemo so slightly different to you.  I also had 20 rads.

If I were in your position I soils have the surgery and ask if after that there is any other chemotherapy that might help.  Also to ask about rads.

Its really hard for you at this time so also see if you can get some counselling.  Most hospitals offer this.  

Wishing you well.

pam x

ps. I think I waited four weeks after last chemo for op.

[RuthElisabeth]

Hi Orange. Sorry to hear that. How long do they want you to wait after chemo before you can have op? Hang on in there. Hugs x

[lilneenz]

Wow bel that's so positive to hear, sounds like my diagnosis with vascular invasion. Mines grade 3 no nodes but multifocal little tumors adding up to 2cm hiding in DCIS.youve really helped me today xx have you changed your diet and taken supplements etc xx

[Marina]

Hi Orange, I've never understood how they say cancer takes 10 yrs to develop and then we see it spread so quickly once there is a tumour. In my case I had lumpectomy & during chemo 3 more lumps appeared which turned out to me cancer. However no nodes affected. In June it will be 2 years since finding cancer and apart from chemo brain and achey joints I'm well.
I do think all cases are individual but on this site we can support each other and be encouraged by positive stories like Bels. Thanks for sharing once again Bel.
M xxx

[bel]

Hi Lilneez,
I was 31, & mine was grade 3 with no nodes but with vascular invasion (i.e. had started to move towards nodes). I was triple neg.
good luck! Xx

[Orange29]

Hi,

Looking for something positive. Diagnosed in December with TNBC. Tumour was about 3.5cms. Considered grade 2 and not in lymph glands. So they did chemo. First chemo was 31st Jan. Had 3 further cycles (all of AC). Recent ultrasound has shown little/no response to chemo and now in lymph glands. So stopping chemo and going to surgery. Have to wait a while for surgery, as they say the wound won't heal due to chemo. So a further wait, while it spreads. Trying to be positive, but difficult when just waiting. Anyone had similar experience?

[RuthElisabeth]

Hi Whitfield. Thanks for the tips. They did give me Emend but it hasn't helped really. Just trying to eat a little at a time and keep my fluids up and hoping it will soon pass.

Take care all you other March starters- we can do this! X

[lilneenz]

Wow 15 years how positive !! How old were you on diagnosis and did you have nodes affected etc. I'm 43 and just waiting to hear if I am triple neg or her2. I have grade 3 multifocal invasvive (2cm) no nodes xx

[bel]

Yes! 15 years & no recurrences or new b c. Only reason I came back on this site was cos I found out I was a brca carrier so recently had preventative surgery. I imagine most long term survivors are no longer on this site & just getting on with their lives! X

[lilneenz]

Are there any long term survivors here xx

[Whitfield]

Emend was the drug.  Typo.  You may need to ask for this a week or so before next chemo as you need to start before chemo is given.  I recall there were only three tablets per cycle.  This drug works differently as it stops the message from brain telling you feel sick unlike other drugs which just try to stop you being sick.

As Den says drinking helps and assists with flushing out chemo drugs.  The what yo eat books say eat what you can.  Plain stuff worked for me.  Some people have said ginger helps with sickness.

Do hope you are a little better.

Sending Love.

Pam x

[1852]

Try and eat small amounts I used to have a cuppa soup with toast if I couldn't manage a meal try and keep fluids up. Like pam says ask about different anti-emetics 

[Whitfield]

Embed are the best anti sickness tablets I had.  See if you can get for next chemo.

px

[RuthElisabeth]

Hi 1852.  Yes, I had surgery followed by 6 months chemo (tablets) for the bowel cancer. The chemo was optional but I wanted to make sure I had done everything I could to eradicate it. 

Suffering a bit today with bad nausea following first lot of chemo yesterday and my OH has just gone to GP to fetch some different tablets to try. Don't feel like eating anything - hope it doesn't last too long. Anyone got any good tips? X

[1852]

Hi  ruthelizabeth I also had a cancerous polyp removed which we consultant and myself decided to keep a eye on instead of op then I found lump in breast couple of months after I had RT mastectomy in 2014 followed by chemo which finished early 2015 up to press I have had 2 colonoscopies just benign polyps found I was also told cancers were not connected just bad luck did you have chemo for bowel or surgery .

hope chemo goes well and SE,s minimal  we are here to answer questions if we can take care Den x

[Whitfield]

Sorry you find yourself here Ruth.  Seems so unfair to have cancer twice.  You're taking a positive approach and I wish you well.  

I had to make own drug chart to keep on top of the meds. 

Sending you hugs back.

pam x

[RuthElisabeth]

Hi all. This is the first time on this site as recently diagnosed with TNBC. As far as they can tell it hasn't spread which is good and I had my first lot of FEC chemo this morning. I am hoping as others have said on here that the tumour will respond well to the treatment. I couldn't believe it when I found the lump as I have only just finished recovering from bowel cancer that I was diagnosed with 3 years ago. They don't think it is connected just bad luck or bad genes. I am having a telephone appointment with a genetics counsellor on Friday. Feeling ok at the moment just a bit woozy but will have to see how I go. I have come home with lots of different tablets and injections so will try and remember to take them all at the right time! It's good to hear that others have come through this and although we may have a difficult road ahead there are better times to come. Hugs to all out there who are embarking on this journey at the same time as me. Keep smiling. Hugs x

[Marina]

Hello Williams500, I too am TN but older than you. TN is nearly always stage 3, or more, because it is considered agressive. I found my lump & had lumpectomy then chemo 4 x EC 4 x T. After about 2 sessions I found more lumps with inconclusive biopsy results so they decided to continue to end of chemo before removing them. Once out they confirmed they were cancerous so had to be operated again for clear margins. Luckily nodes were clear. Oncologist could not explain to me how they grew during chemo.
After doing a lot of research on Internet I decided not to do radiation. I have changed my diet to help my body recover from the chemo and strengthen my immune system. There is a lot of info out there on how you can help your body.
Don't worry as it doesn't help ( easier said than done I know) and you will always have our support here.
Marina

[Gymnut]

I've just signed the petition too.  I am now 3 years post treatment and just had a clear mammogram 🙂 Did have a scare in the autumn but the lump was a fat necrosis from the lipomodelling.  I am trying to get on with life but do read the posts and keep up with news.  Love to all

[Dee1945]

Just signed it.

[Melia07]

Petition sign

[bel]

I've signed it too, Pam. Glad your lump is just a cyst. X

[AnnDaw]

I've signed the petition Pam. So pleased lump was just a cyst you can relax again now. Hope everyone else is ok. Xx

[1852]

Petition signed hope all ok DEN

[Whitfield]

https://www.change.org/p/nhs-england-and-nice-don-t-delay-funding-for-vital-drugs-and-treatments?rec...

Its about NICE holing back approval for expensive drugs which some of us may need at some point.

please circulate to as many people you know,  we need some big numbers on this. 

pam 

[1852]

Good to hear cysts pam don't think you ever stop worrying .to all new ladies it's horrible when first diagnosed I can remember some people giving me a certain look when I said I was tnbc I didn't google !like others have said it responds well to chemo . It does feel strange once active treatment stops but I think it does for a lot of others because when you going through treatment you are busy with appts and truying to cope with SE ,s and you are seeing dr and nurses regular then suddenly you feel alone ,that's what good about this forum because we can support each other . Take care all DEN

[ChrisAsh]

Hello

 Williams500  sorry you find yourself here but please don't lose heart. The early days following diagnosis are very scary and the Internet is not a reassuring place for TNBC. I was told from the beginning not to google, but to stay on reputable sites like this one, Macmillan or the American site. 

Pam is quite right - one of the positive aspects about TNBC is that it often responds very well to chemotherapy , more so in fact that hormone positive Breast cancer. It's true that there are as yet no targeted therapies like tamoxifen or anastrozole for us TNBC ladies but the up side to that is neither do we have to experience the often unpleasant side effects. The outlook for TN is often very good and I know of many women through the various online  forums and groups I've joined who are 5, 10 or more years out.  My oncologist said to me that once you are at 3 years post treatment your risk of recurrence drops to that of hormone positive BC whilst when you get to 7 years it's not coming back. There are a couple of FB groups which you might be interested to look at for support - TN warriors is a good one but there are others too.

good luck with all your treatment 

chris xx

[Whitfield]

Hello Williams500,

some TNBC react well to chemo.  There are ladies here on this site who have been several years clear of TNBC.  Don't give up hope.  It's not so rare as one might think.  People here can support you and there is a helpline.  Plus counselling that most hospitals can provide.

stay in touch.

pam x

[Whitfield]

Hello Williams500,

some TNBC react well to chemo.  There are ladies here in this site who have been several years clear.  Don't give up hope.  It's not so rare as one might think.  People here can support you and there is helplines.  Plus counselling that most hospitals can provide.

stay in touch.

pam x

[Whitfield]

Many thanks D and A.  Infected cyst which is large.  Thing is it's where I have to do my MLD so is causing a problem.  I'm going to lymph ,clinic today.  At least it's just a cyst.  Will need to come oout when settled.  Third week on antibiotics 😒

pamx 

[Whitfield]

Many thanks D and A.  Infected cyst which is large.  Thing is it's where I have to do my MLD so is causing a problem.  I'm going to lump,clinic today.  At least it's just a cyst.

pamx 

[AnnDaw]

Hi everyone I haven't been on here for quite a while but do keep up with all your posts. I've noticed a few new ladies have joined us so wanted to wish you all well going through your treatment. I went back to work in September last year and am enjoying the normality of it but do find I get more tired than I used to. I think it takes a long time for our bodies to recover after the ops and treatments we've had to endure. I feel I'm moving forward well but still have the odd wobble. Hi to you Pam I hope all went well today I've been thinking about you since this afternoon. Xxx Anne xxx 

[Williams500]

Hi, I am 33 and last week was diagnosed with grade 3 triple negative breast cancer. I have my surgery booked in for April with chemo after and have my fertility app next week. My consultant didn't seem concerned about being triple negative but after reading up about it I am more concerned as I didn't realise that it was rare. Does chemo work as well on this type of cancer as it seems like they don't know as much about it? Is the only treatment difference that they don't offer hormone therapy?

Really new to this and all happening very quickly so was just after some guidance and advice from people who have experienced this beforemail

Thanks x

[1852]

Hope all went well today pam x Den