Diagnosed yesterday, triple negative breast cancer

[viktoria]

I suppose I'm still in some kind of shock. I feel fine actually but at the same time I feel like the rug has been pulled from underneath me.

I feel very lucky because I have a break in work and that was the only reason why I bothered contacting my GP about a small lump. Had no other symptoms.
Had a mammogram and ultrasound and was surprised I was told they wanted to do a Biopsie as well.
And yesterday I received the diagnosis.

It's grade 3 but I don't yet know what stage. I'm off to have an MRI done in an hour.

As I said, I feel very lucky that I had it checked out when I did. I also have a supportive husband, and two supportive (young adult) children, 22 and 24,

But obviously I'm also worried. My life will totally change. Hopefully only for the next year. The consultant told me I'll likely have 6 months of chemo and then surgery, and I should expect for all the treatment to take 1 year.
I work freelance and am the main breadwinner so the money side does worry me.
But not as much as the prospect of chemo.
I was wondering if anybody else has had triple negative breast cancer and can share any experiences re chemo

Op I don’t want to be a negative Nancy but be prepared to crash in a couple more days as it normally takes 3 days for chemo to kick in. Also chemo is cumulative. So each cycle knocks you back further so be prepared for that. But also speak up about any side effects, anti sickness meds have come on a long way so don’t just assume feeling crap is inevitable. I had to have drugs to help me sleep after steroids.

I remember also thinking BC would be one shit year then bounce back. Mine was different because it was hormone positive so I’m on treatment for 10 years so a bit different, but be prepared that some effects of chemo can last a long time after chemo. Unfortunately the process really changes you. Seek out all the support you can.

@aodirjjd thank you for your insight.
I'm sorry you're going through this.
You are very right - yesterday I felt FAR less energetic and took it easy.
In the evening a friend came round for dinner who was stage 4 20 years ago (different type of cancer).
I had felt somewhat queasy but not totally nauseous. She was adamant that I should take an anti sickness tablet right there and then. And what a difference it made.
I suppose I have to learn how to read my body in this process.
It's odd as I'm somebody who usually tries to "push through" and I also realise that currently I'm hyper sensitive and question any little twinge. Is this Green, amber or red?
It'll be a big learning curve.

I was diagnosed with triple negative 3 years ago. I had 6 months of chemo, weekly for 4 months then 3 weekly, surgery, radiotherapy and a year of immunotherapy alongside that. It was tough at the time - I had just separated from my exh and had 2 kids and had to keep working - but looking back there were moments of real joy and we did manage a family holiday between surgery and radio. I have some permanent side effects but nothing too bad.
I second what a pp said about the anti sickness meds, my consultant got very cross with me for trying to power through without them.
there was a great column in the guardian by a woman with tnbc at the same time I had it, I found that really helpful - I will see if I can find a link.

Yes definitely take them. Yours may differ but I had no side effects from the initial anti sickness tablets I was given (began with an m?) so I just took them as soon as I was able and kept it topped up for the first 5 days or so after chemo. It’s a bit like chronic pain relief. Better to keep taking painkillers than wait till you’re in agony. , I still felt a bit queasy in between doses and mentioned that on my first checkup so they gave me another drug on top which had the side effects of making me sleepy and hungry - which was perfect!

As a contrast I spoke to a woman who was being sick 10 times a day and just thought it was normal so hadn’t mentioned it to her team. Suffering unnecessarily.

what chemo are you on? Is it EC?

Hello, I hope you don’t mind me joining. My mum (mid 60’s) was diagnosed Christmas Eve with grade 3, 4cm, TNBC They said there is no sign of spreading to lymph nodes. We have spoken to the surgeon who thinks it will be chemo and then surgery but have an appointment with the oncology team on Thursday. Mum hasn’t taken the news well and it’s understandably triggered her heath anxiety. I’m doing my best to support her.
Reading this thread has made me fell less alone
Bless You all

@pinkflowers80 I'm sorry to hear about your mum.
If it's any more reassurance

• waiting for treatment to start has been far worse than the treatment so far
• I just had my 7th chemo today and I'm feeling ok. I haven't been sick, I'm walking well over 10000 steps at least 2-3 days a week, I struggle with my sleep, but I have naps during the day when needed
• I'm on a three weekly cycle. Chemo every week and then immunotherapy on top of the chemo every third week. The week with immuno is usually a bit harder than the other two weeks. But only slightly.
• I do sometimes struggle with the diagnosis as TNBC seems to be the worst type of breast cancer, but equally there seems to be so much more targeted treatment for it, so I'm trying hard to stay positive!

All the very best for your mum

@viktoriaThank you for this

The plan for my mum sounds the same as yours with the immunotherapy every third week and weekly chemo. Tomorrow I’m taking her to have a marker put in and a biopsy for the research department. Chemo will start the following week.

Im so glad you’re not feeling too bad and still managing to exercise. My mum will feel very reassured by this.

Sending you love and strength

@viktoria

I don't want to be negative but currently there is no targeted treatment for tnbc. Only chemo and radiotherapy.

thats what I thought but I’d presume viktor would know as she’s been given a treatment plan that includes some!

and yeah sure enough macmillian site shows 2 https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/triple-negative-breast-cancer#:~:text=Targeted%20therapy,-Targeted%20therapy%20drugs&text=Olaparib%20(Lynparza®)%20is%20a,that%20has%20spread%20(metastatic).

Just an update.
Have only two weeks of weekly chemo left.
So far so good. Getting more fatigued, but still managed to walk 12000 steps, did a few minutes of rowing and also some weights. (I had a DEXA scan and have osteopenia) and went to Tate Modern to see an exhibition.

I had great news after my ultra-scan last week. My tumour has shrunk from 2.5 to 1.7cm. The oncologist called it a modest shrinkage... but that's fine with me!

From Mid February I'm starting on EC chemo and will continue with pembro immunotherapy, both every three weeks.
Have read a bit about EC which sounds a bit scary but I think I managed to stop myself before I spiralled - like before I started chemo in November.
I'll keep being positive!

Maybe "targeted" isn't the correct term

But I won't have radiotherapy

I meant immunotherapy (initially alongside chemo, after surgery, as a stand alone)

Which I think has only been used for the last 5 years or so but seems to have good results.

@viktoria

Why aren't you having radiotherapy?

@tothelefttotheleftyou are right, i actually might end up having radiotherapy too but it all depends on what they find when they do the surgery. At the moment though the plan is just to have immunotherapy after the surgery

@viktoria

I do hope you are doing well and that the second phase of chemo is manageable for you.

My mum is on week 8 of the first phase (Paclitaxel, Carboplatin and immunotherapy) and she’s had a scan this morning which shows the tumour has shrunk to half its size. It’s now at 2cm which is good news.

Hi all, stumbled upon this thread whilst on another c thread.

also have TNBC. I’ve been on weekly chemo since Nov, the 3 drugs pacli pembro and another immuno and now just changed to EC. The other drugs were really quite fine and manageable. EC is the literal worst of the worst. Struggling daily. How is everyone else?

@pinkflowers80that’s great news! Mine shrunk by a third which I was very pleased with. But shrinking by half is wonderful!

My tumor had shrunk to virtually nothing by the time I had my lumpectomy - the immunotherapy really is a game-changer for TNBC. I think I was the first patient in my cancer hospital to have it for breast cancer so count myself very lucky.

@Bangersndmashi had just typed a very long reply to you and somehow managed to delete it. So I’m trying to condense it a bit now
Definitely find EC and pembro harder. Am getting it every three weeks, my next one is on Wednesday.
First three days were pretty normal, then a full week of fatigue. Felt like I was 100 years old. But, as i am not working and my husband is wfh and is making all meals and i literally didn’t have to do anything and spent the week watching TV and napping, it was ok. I made myself go for a daily walk. Short one and i had to walk with somebody to hold onto but i found that helped.
Then when i thought my better week was coming, I was told my white blood cells were so low that i had to take filgrastim shots. First of all i found that mentally REALLY tough. (I had been very worried about those shots and then was VERY relieved to find out I wouldn’t need to take them as my chemo is every three weeks. And then i had to take them after all).
physically, yes bone pain and more fatigue. Took lots of paracetamols and ibuprofen. I think my first two days were worst then it got better.
had my last shot on Saturday and by this morning (Monday) felt pretty much back to normal. Had a blood test at Guy’s this morning and walked along the river all the way to Vauxhall (about 10000 steps). Hope to have a good day tomorrow and am planning to meet friends in Central london.
And then on Wednesday my second EC.
If I need filgrastim again i think i will ask about pegfilgrastim. Have read that that causes less bone pain and is only given once.
@BangersndmashI’m very sorry to read you are having a tough time. What are your side effects? How many ECs have you had?

@bringonyourwreckingballwow! That’s amazing. I’m very grateful for immunotherapy!

Im now 12 years clear. And have been back to normal life for most of that. I was the breadwinner too so had to work through with lots of help but actually think it kept me going and positive. Make use of all the support that is 9ffered. I echo the Its tough but doable. .....if you have side effects dont feel you must put up with them lots of different medication can be offered to deal with it. I couldnt tollerate the steriids so went on a low dose andwas much better.
Good luck.... you've got this.

I had triple neg breast cancer and 2 small children at the time. Take each day as it comes. It only really turned our world upside down for about 10 months and then it wasn’t as bad as I envisioned.

Hearing all this gives me so much hope. You all sound so strong and positive.

@viktoria My mum has been having the filgrastim shots too. She had to miss her chemo in week 5 due to low white blood cells so since then she’s on the jabs. I didn’t know there was an alternative one. I might ask about this as I’m having to go round to hers and do the injection for her everyday.
We have an appointment tomorrow to look at some wigs. She has so far been cold capping but now has a bald patch on top of her head and the nurse last week said they have to be careful now as with no hair in that area you can get freezer burns so it might be time to stop the cold cap now.
She’s also not sleeping too well but I wonder if that’s due to the steroids or her anxiety.

So I’ve been having chemo weekly since Nov then 2 weeks ago started the EC. Been having immuno throughout (3 weekly). From Nov it’s been a little difficult but manageable, nausea, the worst mouth ulcers, eyebrows and eyelashes finally fallen out. Also get really bad… is it called neuropathy? My fingers and toes go cold and blue and can’t feel them. Cold capping has been working wonders and still do have a full head of hair but think it is only a matter of time as this EC is putting me in the gutter, I’ve never done anything so hard in my life.

started my first round last mon, and for the first week awful awful sickness couldn’t eat and tried so many different anti nausea that did nothing. I left the chemo unit in tears as I was scared to go home, never felt so bad. Spent the next day in bed (first time ever). My nails are really damaged and think they are going to fall off soon, and also really sore. I have also counted approx 8 mouth ulcers in my mouth, which are giving me such problems I can’t eat. I’ve been to the unit and they’ve given me something for this so hoping to turn a corner soon.

I have also been taking those filgastrim shots every 3 weeks since Nov. For me, they aren’t that much of an issue, I sometimes get a little joint pain towards the end of the 5 days but it’s nothing to write home about.

i have two under 3 and my days are quite hectic I don’t usually get chance to sit still but the first week of the EC I have been a zombie.

I have the best support from my family and someone is here every day to help, as it’s needed. But I’m usually at the farm or soft play or park. I understand how you felt @KiwiFall

sorry @viktoria this post might be a bit rambled my sentences are everywhere. As you can gather, I’ve been going through A LOT but starting to turn a corner this week and feeling so much better, despite all my ailments. I’m trying to think of the end goal. Good luck for Wednesday, how are you feeling? I feel like crying every time I think of going back and having my next dose. We are both 1/4 of the way through so it sounds.

have they discussed surgery with you, what are you hoping for? Are you having your scans soon?

so nice to talk to someone going through the trenches and can relate.

@Bangersndmash Omgosh you’re going through the wringer. I’m so happy to hear you have help. I wish there was something I could do. Sending a virtual hug.

@Bangersndmashfirst of all - you are absolutely amazing doing all this with two under three. I barely managed two under three without cancer/chemo. Please give yourself enormous credit for that. I know it’s not something where you have much of a choice, but still - you have my utter admiration.

It sounds like you have much worse side effects,
I barely have any nausea. I think since starting chemo in November i have taken about 10 anti sickness meds. I’ve heard that you should take them at the slightest hint of nausea (which I do) and never ever try to push through. But it sounds like you’ve tried all sorts of anti sickness meds - are there any other options for you? Don’t give up asking.
Sores in the mouth - hate those. Mine aren’t too bad. I’ve been given Oralieve which has helped so far.
Neuropathy - I’m going to bed with a hot water bottle by my feet every night. I said to my husband “feel my feet, despite my hot water bottle they are like two blocks of ice”. I couldn’t believe it when he said “your feet feel really warm”. So far the cold feet are annoying rather than anything else.
I’m assuming you are doing the standard things like drinking a lot of water the day before and the days after chemo. Not sure if it helps but I’m doing that.

I’m really glad you have minimal side effects with the injections!

Also great that you have most of your hair. Mine is getting quite thin at the top. I’ll keep cold capping for the time being.
My eyebrows are nearly gone but i still have lashes.

No changes with my nails for the time being. I’ve heard various bits if advice, either paint them, or don’t paint them but apply oil to them. Have no idea if either helps.

I appreciate it’s easier for me to say, but when I feel despondent and down (which i did a bit when i had the week of fatigue) i tried telling myself “whatever I feel, the cancer cells will feel much more, and i REALLY want them to suffer!”

I’ve had two days now with barely any side effects. Walked lots, had lunch in Soho, met up with friends.

My second EC and pembro tomorrow. Because I feel so well today I’m actually not worried about it. I feel like “bring it on. I’m glad I’m well enough to have chemo tomorrow. I want to get this over and done with asap”
But I’ve certainly have had weeks where i felt like I hadn’t properly recovered from one chemo by the time the next one came along - my mum died in December and that was tough.

Whereabouts are you having your treatment? I’m at Guy’s in London