What I meant by saying that we can't take anything else is that those of us who are TN can't take Tamoxifen and other hormone treatments after we've finished treatment, but if you are post-menopausal you can have infusions of Zoldronic Acid, which is a bone strengthener and helps to prevent bc spread to the bones and my onc said that recent studies have shown that it can also help to prevent a recurrence x
Hi Jencat, I notIced you said...
'we can't take anything else after active treatment' ???..
🤔 Not sure does that mean there's no other treatments open to triple negative after initial primary cancer treatment ...or is that just in relation to supporting treatments like the zoledronic acid.
If the chemo you are having is likely to cause sickness or nausea your unit should prescribe you with anti-sickness drugs but this doesn't always happen. Some hospitals have a wait and see approach. My unit had a prevention is better than cure approach so I was given Emend to take prior to chemo (FEC) being given, then had to take one a day for two days. I was also prescribed a second tablet to take for a couple of days plus a third prescribed set of tablets to take if required. I can't remember the names of the other drugs, I'll check later. After my surgery I went on to have 4 rounds of TC (I was on a trial) and didn't need to take any anti-sickness tablets. If you are concerned speak to your bc nurse or onc and I'm sure they will sort you out with meds. xx
Glad onc mentioned Zoldronic Acid to you today. Are you going to have it alongside chemo or once you've finished? (I had it alongside chemo and also have it 6 monthly at the chemo unit)
I had 3 FEC and 3 Docetaxol, so I'm not sure if the side effects will be the same as the chemo that you're having. I was very fortunate and wasn't sick during chemo at all and only felt a bit nauseous a couple of times, which was sorted by eating ginger biscuits. I wore travel sickness bands whilst the chemo drugs were being administered and for about three days afterwards. If there's anything I can help with though please ask.
Good that you've got a plan now x
Seen oncologist today and yes, Zoldronic Acid was explained. I’m having 3 cycles of Epirubicin and Cyclophosphamide followed by 3 of Paclitaxel. This is starting a week on Monday. Feel calmer now there is a timetable. However, rather concerned about the possible nausea and vomiting. Any tips?
Curedars get your teeth checked before chemo, dentist will fit you in, get yourself booked in a look good feel better session through your local Macmillan, get soft toothbrush and difflam mouthwash, anosol and baby bum wipes 👍the chemo is doable you just have to juggle while standing in one leg with a feather duster in between your raised foot too 👍while singing my way 👍😘😘Shi xx
Next step is the meeting with the oncology team. I will ask about ZA.
Thanks for the tip re travel sickness bands. All advice gratefully accepted!
Pleased to read that you got good scan results yesterday. Has your onc mentioned you having Zoldronic Acid alongside your chemo or/and after chemo for 2 or 3 years afterwards? It is an infusion that helps to strengthen the bones and helps to protect against bc spreading there.
When I had chemo I wore travel sickness bands whilst I was having it and for a few days afterwards and didn't suffer with any sickness at all. It could be just a coincidence, but I thought I'd mention them to you x
Thanks Susie B. My next step is the insertion of the marker next week so a little concerned that this tender boob will be assaulted again! I hope the chemo is doable as you say. There’s a lot of brave women about.
Hi Mini Mad,
Thanks for your reply yesterday. Congrats on getting through your chemo.
My TNBC has not spread beyond the axillary lymph nodes so that’s a big plus. Looks as if 4 months of chemo will start towards end of October after MRI etc. Hope I will start to feel more energised now that things are happening.
Glad I could be of some help I hope you get on ok regarding the Zoldronic Acid, hopefully you will when you show your onc the info from here and Cancer Research. I noticed on the chemo thread there is a lady there (Sept '19 I think) who is TN and her onc hadn't mentioned Z A either-bit worrying that onc's don't seem to know about it or if they do, don't have the correct info. When's your appointment?
Missing all the chat from the Feb group! Please send my best wishes to everyone xx
Hi CureDars, from another older lady... i'm 69 !!
sorry you find yourself on this site 😔😔
i was also TN, i put was because i finished my chemo 5 weeks ago. Grade 3, 2 lumps in left breast, 3 cms and 6 cms....
Worse time is waiting for results.... nerves n worry go into overdrive...
once my treatment plan was arranged i def felt more positive and hope you will feel the same xx
pls let me know how your appt goes. Mini mad xx 💖💖
Thank you so much for your reply. I was pretty confident I should be getting Zoledronic acid at some point and as I've said I was a bit thrown when told I wouldn't be getting it. The Macmillan website doesn't give much clarity but this site and Cancer Research UK definitely do. It's in situations like this that I am so grateful not only for this site but also for the help, support and information we all pass on to each other. I'll let you know how I get on.
I'll pass on your best wishes to MBJ and Edinbird. xx
Your onc is wrong, as you know I'm TN and have been having Zoldronic Acid during chemo and since I finished and will continue to do so next year. I don't think it's just for TN, but for women who are post menopausal. It's definitely worth checking because my onc said it helps to prevent bc recurring in the bones and that in recent studies it had shown it can help to prevent a recurrence of bc. As we can't take anything else after active treatment, you don't want to miss out on it. Also, I have to have a blood test a couple of days beforehand and I know not everything is picked up with that, but perhaps it would give an indicator if something was wrong.
Please send my best wishes to the Feb'19 group, glad to hear you're all still in touch. Hope MJB and Edinburd are getting on ok x
Many thanks. You’re absolutely right. I’m imagining this thing growing and spreading very quickly!
This forum is a great help.
Thanks for your encouragement. Have ordered the Prijatel book. It was good to see the YouTube clips too. I will post again when I have the PLAN!
I see you've had a few replies but just to reassure you I had some discomfort too after my 2 biopsies, but perhaps not as bad as you. I had a titanium marker put into my tumour aswell. The biopsy site under my arm wasn't too bad but my boob was rather bruised and swollen. Don't worry the pain is not because your lump, I called mine Gremlin, is growing or anything. The pain will subside in time. As far as surgery goes, lumpectomy and ANC, I found that far less painful. Only took a few paracetamol and that was purely so that I could really stretch myself whilst doing the arm exercises you'll be asked to do. Good luck with your ongoing treatment. It's tough at times but doable. xx
Just jumping in on this feed. I'm glad you mentioned Zoledronic acid. I'm also TNBC and am most definitely post menopausal. When I enquired about bone strengthening meds to my onc recently he muttered something to me about hormones and them not being suitable. Threw me a bit as I was sure I'd read somewhere that Zoledronic acid was used in our case.. You've reassured me that wasn't imagining it. English is not his first language but he understands and writes it very well. I rang my bc nurse last week and I now have an appointment in November, after radiotherapy which started on 21st Oct, with another oncologist who I trust and have seen her a couple times. I have been advised to get teeth checked, which I was already aware of so I'm keeping my fingers crossed that I will get it. .
As an aside, I'm from the Feb 19 group, we've chatted a few times. You may have notice that chat has more oepr less stopped. Don't worry we've set up a Facebook Messenger group and are still chatting 19 to the dozen on there. Some of us still intend to pop into this site from time to time.
Hi CureDars, I'm from the Oct'17 group with Shi. I was 57 when I was diagnosed with TN (I'm 60 now) I noticed you haven't said anything about having Zoldronic Acid alongside the chemotherapy or on it's own afterwards, has your oncologist mentioned it to you? It's a bone strengthener x
Curedars, sorry you find yourself on here, when you know your treatment plan, jump on the respective thread surgery or chemotherapy starters for the month when you start. Surviving triple negative breast cancer by Patricia prijatel was a very good book that I found useful after I was told tn in june17. Also google people like Shannon Doherty, robin Roberts, Joan lunden (all Usa) but tnbc survivors 👍 and there are plenty of us on here too, me, Jencat, Fi Millan, treehouse 💪💪💪 please use the someone like me or ask the nurses on here too. Please keep of dr google about tn. Trust your teams because they have seen it all before, they will know what to do. Book yourself on a look good feel better session through your local Macmillan too ❤️Hope this helps a bit 💕💕✨✨Shi xx
Hello again CureDars,
The pain from the biopsies sounds like it is really worrying you. They would have perhaps also inserted a titanian clip to mark the area. Why not ring your breast care unit and talk with them about it to put your mind at rest. They will be used to the various reactions that people may have and what may be considered normal or not.
I definitely remember having a bruised boob for a while and it was a little sore. It made me quite sensitive to that area and I found it dfficult to distract myself from it at times as it was a constant visual and sensory reminder of my situation.
Sorry to hear that your husband has been through the wars too,. Great that he is in remission. Best wishes for your scan results and appointment on Thursday.. Be good to yourself,
Many thanks for your reply. It really helped my day. I cut down the codeine and nausea improved.
I suppose I’m frightened as to why I am in pain. What’s happening inside my breast to make a core biopsy such a problem?
I am very fortunate to have an older husband to care for me. He is in remission with lymphoma at present. What a rollercoaster! Our children joke about me taking the limelight now........
Next Thursday, hopefully Is results day. The consultant told us I would need chemo, surgery and then chemo. I got a recommendation for a book on these TN posts and have ordered it. Why couldn’t I have normal, ordinary breast cancer?
I will take your advice re going into Maggie’s etc. If there’s anyone one reading this who is slightly earlier in their diagnosis, I found the Macmillan Centre in my hospital very supportive of both me and my husband.
Sorry to hear about your diagnosis and that you find yourself here. My breast cancer was not TN but I did not want to bypass your Post without saying hello. Hopefully someone with more direct experience will respond to you as well.
Sorry to hear that you are still feeling the effects of the biopsies. Really hope the pain has reduced. If you are suffering with nausea from the pain relief, perhaps try with food or discuss with a pharmacist or GP for the best alternative if necessary. Codeine type meds can be effective but they can also play havoc with your digestive system and especially leave you with constipation as well.
I would not be surprised at feeling so "ghastly before chemo". You have been through a lot already which can take its emotional and physical toll, and you are still waiting for some results and no doubt a definite treatment plan. Is it definite that you are having chemo? I went through chemo too with its ups and downs so to speak. In my situation (triple positive), I just saw it as a necessary part to get through to give me the best possible chance afterwards.
We all need time to process what is happening and to come to terms with it. It is a lot to go through especially when you are first hit with it and you are playing the waiting game with tests and results. A lot of people report feeling better once they have all the diagnostic results and the treatment plan is in place. For various reasons, it can be difficult to share things with family and friends at times, or when you are living on your own. I hope you have people available to support you in whatever way you wish.
Depending upon your needs, it may also be useful for you to find out what is available in your area such as a Cancer Support Service like Maggies or similar. There are also lots of sections on the forum where you can receive and give support, as well as making use of the free Breast Cancer Care (BCC) helpline, the Services offered e.g the Someone like me Service which will try and put you directly in touch with someone who has walked your path so to speak, the mass of information booklets available from the main BCC site etc.
Best Wishes to you,
I am 68, recently diagnosed with TN which has spread to the lymph nodes. Had CT scan yesterday and get results next Thursday. Have experienced a lot of pain from both biopsy sites. GP has given me 30mg Codeine which is helping alleviate the pain but also appears to give me nausea. Surprised to feel so ghastly BEFORE chemo! Would appreciate any advice and encouragement. Thanks.