Just wondered how all you lovely ladies are doing now?
I've recently finished chemo-can't remember who said about TN responding well to chemo, but it did in my case-the lymph node I'd got in my breast shrunk back to normal size after 3 rounds of FEC, which meant I only had to have 6 rounds of chemo instead of the probable 8. Found out a few days before Christmas, so that was my best present
Waiting to start rads soon and got my genetics meeting at Guy's next week
Also on a positive note, I recently discovered a friend who had bc over 10 years ago is TN xx
Ali, thank you so much for sharing your marker coil experience. All really useful stuff - and I surely won't look at any needles headed in my direction! Urgh!!
All VERY best to you today, Jencat. Would echo Ali and Eliza re fluids, meds and also a bit of just whatever you fancy! xxx
Hi Ali, I've been meaning to say that I've been offered genetic testing on the NHS because I'm under 60 (I'm 58) although bcn said it's pretty low that my bc is caused by that because of my age and no known family history of bc.
Thanks for the chemo support, starting today! Must say I felt a bit wobbly and sorry for myself about it yesterday,but telling myself to get a grip! xx
Hi Ali, I had the taxane before the EC and had an immediate response. My concern was the reverse of yours - would the EC get the same good response!
Thought you might like to hear this-my ED spoke to me earlier to tell me that her work colleague had bc 5 years ago and was TN grade 3 and is doing very well, ED didn't even know she'd had cancer until she mentioned it. Gave me a boost this evening as I'm starting chemo on Tuesday and beginning to feel a bit panicky!
When are you starting chemo Sue? xx
Hello Team TN - have had a day of kamikaze gardening in the lovely sunshine. All v therapeutic!
I think the reason I'm being measured so much is because there's quite a lot to measure - well over 4cm. They're sticking a coil marker in the middle of it in a couple of weeks time, which apparently is to help the surgeon find the lump after chemo.
I had some trouble getting my head round this since, to my mind, my lump almost walks into the room before I do. However, having made some calls (including to the lovely nurses on this BCC helpline), it turns out that - just as Jencat was advised (hi Jencat!) - TN tumours do indeed respond really well to chemo, that lots of people ask the same question about the marker and they fully expect my lumpy monster to be genuinely hard to find come January. Really positive to hear.
Ali, I think the T bit of the treatment will be just as effective at the cancer-munching/growth reduction as the earlier cycles. I'll swap you some of my measuring sessions if you like - it sounds as if my local team just can't wait to get their little callipers out!
Caroline, I was intrigued to learn that some people can feel a bit abandoned once treatment finishes. I can sort of understand this - all this intense focus is pretty full-on - but, like you, am SO looking forward to being abandoned asap....
Hang in there ladies, and all the lovely supporters too
Good shrinkage, Ali; that is very positive. I too have had a good response to chemo and so have other people in my trial (including those in the control arm), which does bear out what they say about triple negative responding.
I saw my surgeon and have a provisional date for surgery of 15th November, which will be just over 3 weeks after my last chemo is scheduled.
I have had BRCA testing through the trial and there is a bit of family history including ovarian and prostate cancers, but it came back negative.
Ali, meant to say what brilliant news about the lump shrinking - a quarter of it gone! Got all my appointment letters about 6, 12, 16 and 20 week measuring yesterday, which was a bit of a surprise, but all good. Here's to more shrinking!
Morning all. I was offered the gene test (although I'm 52, no kids) - now waiting for the results, which I was told took up to six weeks. After chemo (ECx4, Tx4) they foresee lumpectomy then radiotherapy, although the surgery stuff could always change depending on the BRCA findings. Ho hum! xxx
Hi Ali S, I was immediately offered genetic testing as I too am under 50 with TN. Thankfully it was negative for BRCA 1 and 2. I thought it was standard to be offered it, but it seems not. There may be other criteria that I don't know about.
Hope this helps.
I picked up a booklet about genetic testing 'cancer genetics, how cancer sometimes runs in families'. It's a macmillan booklet.
Another thought.. The carers suffer as well as us. I think my DH is rather traumatised by it all. The carers need sympathy as well as the sufferers.
I'm fine, Jencat, thanks for asking. I have had 9 doses of radio with no side effects. The skin looks faintly tanned, but not sore. I have 6 to go.
I will be glad when the radio is over as I feel that I don't have a life just now with having to go to the hospital 5 days/week. I don't have much time to do anything else with all the travelling.
Apparently some people feel abandoned when the treatment finishes, but I think I will feel relieved to get my life back to normal.
Hi Ali, feeling a little anxious as it makes it all seem real! Any questions I should ask?
BCN phoned me about genetic testing today, so a bit concerned about that now as I've got two daughter's. I'd have to go to Guy's and I don't have to do it, but even although the genetic risk is low because of my age, I think it would be wise to pursue it after chemo is finished.
The BCN seemed more reasurring about recurrance, yes TN has a bit of a higher risk in the first few years, but all bc has a risk and most bc's don't come back xx
It's different for everyone.
If I wanted to stay in bed I did and if I wanted to go shopping I did.
I also did gardening & housework as I felt up to it.
I did not want visitors too often so I refused some of them.
Be kind to yourself and take every day as it comes.
Thanks for the info Ali and Caroline, so good to know chemo is doable and although maybe not great, not too terrible either. How many lots of chemo are you having/had?
It's nice to know as well Ali that you've felt well enough to do normal things and at least this time of year I won't feel so bad staying indoors anyway xx
I had fec-t and was pleasantly surprised how quickly I felt better after the treatment stopped. The treatment was every 3 weeks and I just about felt OK by the time of the next treatment, but was back to normal 4 weeks after it finished.
Fingernails are still breaking after 4 months but half regrown.
Sorry, forgot to say Sue and Ali, glad chemo going well for you too xx
How long did you feel poorly for after having the chemo? x
Hi all, hope you're having a good weekend. Chemo nurse phoned me yesterday to say I've got a meeting with them next Thursday and chemo will start on the Wednesday or Thursday the week after. Had a bit of a panic this afternoon thinking I don't think I can do it, but feel a little calmer this evening.
Good to hear what your surgeon and onc said about chemo Ali, that's very reasuring to know. Wish my onc had started our meeting with positive comments like that.
Glad to hear you're doing well with the chemo Eliza xx
Hello all! I've had a good week 3, with no additional meds to take, which has given me much more energy.
The reason why why olaparib isn't standard is because as yet there is no absolute proof it enhances the effect of chemo, so it is not yet approved for use in treating early breast cancer. The trial I'm in is looking at whether it does and also when it should be given. I'm in the arm that starts it 2 days after the carboplatin and another arm starts it 2 days before.
I'm not having the F with the EC. My onc implied that I would have had it if I hadn't had the carboplatin. I think she does either carbo/taxol + EC or FEC + T.
I'm due to see my surgeon late Monday morning to see if he thinks it has responded well enough for surgery (onc thinks it has). Then the next EC in the afternoon, so a full day at the hospital.
Wishing us all a good weekend. Eliza xx
Morning Ali, Sue and Eliza, nice to hear from you all and good to know you're finding chemo ok. Reassuring to know Eliza that TNBC responds well to chemo!
I'm having 3/4 lots of FEC (although I read on a newly diagnosed thread that CK said her onc said that F isn't being used) and 3/4 of T with a new trialled drug, which I'm having alongside chemo, but reading my onc's letter, it sounds as if I will still be given it for 3 or so years after chemo finishes as it mentions me having 6 monthly dental appointments (apparently a side effect can be on the jaw)
Interested to know you're having this olaparib Eliza, wonder why we can't have that as well?
I flutuate between feeling everything will be ok and reassured by Ali's onc being fairly upbeat with TN to panicking! I suppose that's normal and even with other types of bc's there are no guarantee's xx
Great that you told your onc how you felt, Jencat. Hopefully she will be more thoughtful in future. Apparently TNBC often responds well to chemo, so that is a positive.
I'm being treated in a clinical trial that adds olaparib to 4 cycles of carboplatin and paclitaxel (weekly paclitaxel and 3 weekly carboplatin with 12 days of olaparib) and is then followed by 3 cycles of EC. I've had the carbo/taxol/olaparib and the first EC. Definitely got a good response to the first 4 cycles but less sure about the EC. I'm having chemo before surgery.
I had been warned that the cyclophosphamide might make me sneeze as it went in, but it didn't though my nose did itch...
Hi ladies, I'm triple negative too. It's been a week since I had this particular news and had first chemo session yesterday.
I'd already gone into DEFCON 3 mode when the first cancer diagnosis was confirmed 3 weeks ago. Went through every pile of papers, every trinket box with the strange rubbish I'd been stuffing in there for years, re-read letters from old boyfriends, chucked out SO much stuff over days and nights of compulsive sorting. The reason for doing this, of course, was because in my head was the "This is it" moment. I even made keep-sake boxes for the people I love!
Now things have sunk in a bit, including the TN information, I've reached the view that I am where I am. There's nothing I can do to alter the diagnosis but I CAN change how I respond to what it will bring. It's a bit like having a toxic colleague in the workplace - you can't change their behaviours, you can only change your own, and while I'm not thrilled with the immediate prospect of 20 weeks of chemo, I'm going to try not to look round too many corners for the middle or long-term, including googling any data. That could change, of course, but the up-side for right now is that I have a very tidy house!
The first chemo session was so much better than I'd been expecting, although it started off strangely. When I walked into the reception, we did the usual ritual of name and DOB, then the receptionist said, "Blah blah area, take the first left, Chair 21." I must have looked very confident (like someone else?) but she hadn't clicked I was a newbie. Once we got things back on the right foot, I plonked down in Chair 21. Everything was going swimmingly when, just before the cannula went in, they realised I hadn't been given the anti-emetic that I should have taken an hour before the appointment. No one had told me about this or given me the medication! So, pill popped, I twiddled my thumbs with my arm snuggled into the heat-pad-thing for an hour before we got down to business.
It was all completely fine. Lots of lovely eye contact from the nurses, lots of explanation and some intriguing tips based on their experiences, eg, "if you have a favourite perfume you wear regularly, try swapping it out for something new while you're going through the treatment process." Something to do with emotion, memory and smell, I think. Anyway, it's the perfect excuse to buy a new fragrance!
Also, when the various drugs (epirubicin, which makes your wee go pink for a bit, and cyclophosphamide) were going down the tube into the cannula, I was told I might feel certain fleeting sensations, such as tickly backside (?!), a taste of black pepper at the back of my nose, a sudden headache down my nose and across my eyebrows. When none of these things happened - very disappointing, especially the tickly bottom - my friend and I got a fit of the giggles and I kept bending the tube, which made the machine start beeping. The nurses were very patient and good humoured about us cackling away in the corner. Thank goodness we were the only ones there by this time.
Last night and today have been fine. I'm a bit tired, a bit spacey, and there are lots more anti-nausea pills to take than I was expecting. This could have been because, based on some advice on one of these brilliant threads, I kept saying "I'm a very sicky person, I'm a very sicky person!" so someone must have written it down. The irony is that I missed one earlier because it was 30-60 mins before a meal and I forgot, so am off to buy a cheapy dosette box in the morning.
So after all that jabbering on, I guess the TN thing is really an extra card to hold in our cancer hands. It might mean something, it might not. I've been looking into some counselling options provided by my hospitals/Macmillan and there's also a specialist centre fairly close by which runs lots of services re cancer support. It might be a good space to talk through some of the feelings I don't want to lay on my loved ones. Just waiting to see if any of that nausea turns up in the next few days before I start ringing for appointments!
Just realised I've repeated myself about buses!
Reasurring that your onc is upbeat about TN and the research. My consultants were too, it was just the onc that made me feel down about it all xx
No, touch wood I haven't had any effects from my flu jab at all! The nurse actually recommended I had one for pnemonia as well, but I need to check about that.
I was talking to a friend at work who's had bc and the same onc and she said she was told data as well! Nobody else on the forums seem to have been told anything, so it's obviously not compulsary info!
I worry that I've got a higher risk of bc recurring in the first few years because we can't take tablets after treatment, but I'm hoping in time it'll become easier to push to the back of my mind. How do you mange to try and forget about it?
I still haven't got a chemo date, but onc did say 2-2 1/2 weeks when I saw her last Wednesday. Did you get sent a letter? I haven't met the chemo nurse yet either.
So many people have told me I could get run over by a bus! I'm beginning to develop a bit of a phobia about them!
Are you finding the chemo fairly doable? xx
Hi Ali, the drug she's giving me begins with zed I think, but I can't read onc's writing on the consent form! I think it's to protect the bones too, she might be giving it to me because I'm older. (58)
I went for my flu jab and cried on the nurse! She said ignore statistics! She also said in the percentage of women who did die, apart from those who died from other natural causes, we also don't know how many had refused to have treatment,which hadn't occurred to me.
The nurse said yes, other bc's are easier to treat, but new treatments are coming up all the time. She said not so long ago diabetes (can't remember which type she said) was difficult to treat, but now it can be kept under control. She said a positive attitude also helps (I'm trying, but still struggling at times) plus a healthy diet and keeping active.
As far as my onc giving me all the info unasked for (the nurse said today they have to, really?!) I'm still upset about it. I questioned her about it, but some people might not because if the onc said so it must be right.
It is the recurrance that's bothering me, I know everyone who has bc feels anxious until they reach 5 years, but I think with us it's going through all the treatment for it to possibly come back sooner. Although the nurse today said you could be anxious for 5 years and be fine and then on the way back from the hospital get run over by a bus! (I'm beginning to develop a bit of a phobia about buses because it keeps getting quoted at me, even by the onc!) xx
Hi Ali, thank you so much for your reply. Yes, that's exactly how I felt about having the chemo too, but my onc has reassured me that it definitely is when I told her that I wasn't sure it was worth it.
I'd felt ok when I'd seen two different consultants recently who had both seemed upbeat and infact one had said to my daughter that I'd be fine and at my future grandchidren's parties and he must have known I was TN at that point. I mentioned this to the onc when she phoned yesterday (think she probably wished she hadn't when I told her how negative she'd made me feel, for which she apologised! Think it was lack of sleep that made me more bolshy than usual!) and she said yes, you probably will be fine. Plus my onc agreed with me when I said the data was out of date as it must be at least 10 years old, so survival rates would have increased since then with new treatment available and those who'd died didn't all die of bc, so that alters the statistics too.
It's the higher rate of recurrance in the first few years that is still worrying me and I wish she hadn't said about it because I want to have the chemo with a positive outlook for the future. Reassuring to know though that there's a lot of TN research going on, my onc didn't tell me that. Perhaps she doesn't know! My onc is giving me a new drug alongside the chemo though, which has recently been trialled and has shown good signs in helping to stop a recurrance, so I have got something a bit extra xx
Thank you for your reassuring reply Eliza. Actually my oncologist phoned me the next day and I told her how negative she'd made me feel and I'd wondered if it was even worth having chemo! She did apologise for upsetting me and reassured me that it definitely was. I also said to her that that the statistics she'd quoted must be at least 10 years old for them to know the data, which she agreed, so I said then the survival rates must be higher because of better treatment now and of those that had died, they didn't all die of bc, which she also agreed, so that alters the info too xx
I'm another who is TN. Currently having chemo.
My oncologist told me that if I was looking at TN survival statistics, I should remember that these relate to women treated over 10 years ago. And that as a starting point, the chemo regime I would be getting has be shown to be more effective than the one(s) those women would have had.
Thanks for the lovely hug and message Helena. What I'm finding hard is the fairly low 10 year survival rate the oncologist gave me (which I hadn't even asked for!) and I keep thinking about it. I'm trying to think well why wouldn't I be in the pecentage that are ok, but then my mind goes into overdrive again xx
Oh mate I am sorry to hear about this, it is a lot to take in at the moment and it is the shock of it all, give yourself time to take it all in and you will get your positivity back.
Never ever think that you are rambling, we all get you and are here to help and support you in whatever way we can.
Sending you a hug
Thanks for your reply Scooter. The statistics she gave me I think were for women of my age, so probably not the same for everyone. I think I could cope with being TN and the treatment if she hadn't given me the statistics which I hadn't even asked for! xx
Hello everyone, I had my first appointment with my oncologist today who informed me I'm TN. I knew I was er-, but not triple negative. Although my oncologist was a very nice lady, the 10 year survival statistics she gave me were quite depressing, yet both my consultants had been very upbeat about my future prognosis, saying that I'd be at my grandchildren's parties! (I haven't even got any yet) I'm trying to be positive, but actually I'm feeling down and frightened and finding it hard to forget to get the statistics she gave me. (I hadn't asked for them btw) Sorry I've rambled on xx