It sounds like you also had a difficult time with chemo @diamonddapple!
I had another scan booked by the new oncologist. No tumours remain!! And she sent me a letter congratulating me which i thought was really kind. My original larger tumour was 3.1cm so not too big. All the nodes are clear- like your result.
Today i have a surgery appointment. I feel I’m being rushed through but i suppose they need to plan and also I probably do need to look forward. Chemo has been so overwhelming though, I don’t want to be thinking about next steps. And i don’t finish EC until end of November.
When do you think you’ll have your surgery? I think mine might be early Jan but it’ll find out more in a few hours…is surgery going to be scarier than chemo???
Xx
Morning everyone, just wondering how everyone is doing as nothing has been posted for a while.
Im doing ok, my mastectomy is healing well although still very lumpy. I have my planning appointment for my radiotherapy on Monday and radiotherapy will start soon after. I then see my Oncologist the week after to decide whether I have ongoing Pembro or oral chemo.
I hope everyone is doing ok xx
Hi @diamonddapple and everyone
I have two more EC chemo sessions. Dreading them to be honest as my stomach doesn’t cope well.
I’ve met with the surgeon and I’m pencilled in for early January for a single mascetomy and full node clearance. She does immediate reconstruction regardless of radiotherapy so ill come out with a new breast which will be larger than my origianl one and wont match my healthy boob- i don’t care that much if they dont match!
I’m really looking forward to Christmas and having a break from treatment!!
Sounds like you’ve got through the worse of it by now- does it feel that way? Is it a relief to have radiotherapy rather than chemo? Xx
Hi @cf640
Good news that you only have 2 more treatmen5s to go. I was euphoric when I finished mine it was such a relief to know it waz done with. My recovery from my mastectomy was good but then I only had a sentinel lymph node biopsy.
I start my radiotherapy on 15th Nov. I also see my Consultant on 12th to discuss whether I have ongoing immunotherapy or oral chemo.
I can’t believe how quickly Christmas has come around and really pleased you are looking forward to it which I am too as I was diagnosed just before Christmas last year.
@lillytiger hope you have turned a corner with your exercises and they aren’t so uncomfortable.
Hopefully everyone else is doing ok xx
Hi All
I hope you are all doing well.
@diamonddapple i hope radiothetlrapy is going well. I had 40 grays in 15 doses. I think you can also have it in 5 doses though. I had no burning or anything other than a slight darkened skin tone. whilst i found tiredness crept in as it went on and then i felt good after but exhaustion hit me about a month after. Although i had zolandronic acid 3 weeks after which gave me flu for a week and then joint pain, so i am unsure if the radio or zolandronic acid reaction has caused the fatigue. I have now reduced work to half days until christmas and i will see how i go. I hope the fatigue doesnt affect you too much but please pace yourself. I did not (typical me) and it was a shocker when i was reduced to shuffling around!
@gerry22 i hope you fit and well and as fully recovered as it can pissibly be!
@lillytiger i hope recovery from your lumpectomy is going well now. I am not sure if you have radiotherapy planned but i hope treatment is going well.
@cf640 i hope you are now at the end of EC, i found it to be the hardest part of all the treatment and ended up finishing before the last dose. I hope the side effects are easing for you now. I had single mastectomy and full node clearance although no reconstruction. I found surgery to be ok. A bit or cording at first but i stuck with the exercises and at 6 weeks i was almost back to normal.
Other than the fatigue slowing me down. I just have 5 more pembro (no 13 tomorrow, no. 14 on christmas eve) then surgery to remove the other breast which will be end of March. I am really looking forward to christmas, its amazing to think that i discovered my tumour on christmas eve last year. What a year, absolutely tough, absolutely soul changing but not all bad and i got to share the journey with you all. Although i wish you didnt have to walk this path!.
Thank you all for the support you have provided, it means so much! Wishing you all a fabulous Christmas with your loved ones!
Sending big hugs xx Anna
Hi everyone
How lovely to hear your news, @anna_x51. You are so positive and seemeed to have dealt well with all your setbacks and scenarios. It probably wasn’t easy for you a lot of the time though.
I should have finished chemo but I developed
colitis from pembro. They are dropping immunotherapy and I’m on steroids to calm things down. I’m hoping my surgery won’t be delayed. I was looking forward to some certainity but i don’t know what plan B is.
That’s cancer for you though, isn’t it?! One surprise after another- some good, some not so great. .
Xx
@anna_x51 thank you for asking after me. It seems that you are now very much heading towards the finish line. Your positivity and thoughtfulness has been inspiring. I have one stand alone Pembro left which will be on the 9th of January. Very happy to be finishing what will be 15 months of treatment. I am well, aches and pains in my hips, a tiny hole in my mastectomy wound that just refuses to heal 
but otherwise I’m good.
I hope you other ladies feel you are getting to the finish line of this marathon we have been on! Ps heading to NZ to do a road trip a week after my last Pembro, little did I think I’d be able to undertake such an adventure……onwards and upwards ladies. Happy Christmas to you all xx
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Wow @gerry22 you can see the finish line, so happy for you and have a great time in New Zealand.
@anna_x51 so pleased you are coping well with the Pembro, onwards and upwards.
@cf640 hopefully the steroids have sorted out your colitis and you are feeling better.
I myself cannot continue with the Pembro so I start oral chemo on Saturday for 6 cycles , this journey is certainly the gift that keeps on giving!!
Hi @diamonddapple
I hope the side effects from oral chemo aren’t as bad as intravenous chemo.
It does seem to be complicated with treatment- it’s great to have these alternative options.
Xx
Wishing all you lovely warrior ladies a Very Happy Christmas 
xxx
I am 44 years old
I was diagnosed on 16th January 2024 with TNBC
It is 4cm and is in one of my lymph nodes. Left breast.
6 month of chemo to start soon. They have said 12 weeks of chemo then it will switch to every 3 weeks (I think).
From the other post am I right in thinking the first 12 weeks won’t include immunotherapy that is combined with chemo after the first 12 weeks?
They are keen for me to get my flu and covid vaccine and also get an injection to shut down my ovaries to not throw me into menopause.
My choice would be not to get either vaccine or the injection. I feel my body will already be getting a cocktail of drugs with my chemo. Does anyone have any inout regarding this? If they received the vaccines/injections.
I am trying to do everything I can to prepare my body and mind for this journey. Eating clean and exercising.
Can anyone breakdown the chemo regime for TNBC for me please.
I am assuming if you are receiving chemo weekly the dose is lower?
Thank you for you help
Hi sorry for your diagnosis and that you have to be here but welcome. Its a supportive group.
Im 41 and diagnosed in late November. I started cycle 1 on the 6th January. So my treatment plan is 6 months chemo. First 4 cycles are weekly. Week 1 is immunotherapy, carboplatin and paclitaxel and week 2 and 3 is just paclitaxel.
Week 1 is in theory the most aggressive treatment. I have been fortunate that the anti sickness meds have worked for me. They give you loads to take as and when you need but i have only taken the ones prescribed that are for 2 days after chemo. Ivr taken them even though ive felt ok. My main side effect is insomnia most nights and fatigue days 4 and 5 but i am early into my chemo and do expect it to worsen but grateful for the good days. Days 3,4 and 5 i give myself filgrastim injections.
My next 4 cycles is 3 weekly and different chemo then. I have it on my plan but cant remember. Your plan may slightly differ but yhey will give you a 6 month time table. I will then have surgery and then radiotherapy therapy with more immunotherapy. It sounds a lot but once you start youll be fine. Obviously your treatment plan may differ.
I am tn stage 2 and grade 3.
Any questions please ask x
Sorry you asked about vaccines. I was advised to get the flu jab and I did. I have 3 kids and so germs are inevitable in my house. No mention of covid vaccine or anything to stop early menopause. They have told me it will likely put me into menopause but i already thought i was a little perimenopause anyway!
Hi sorry that to hear about your diagnosis. I am triple negative too and just coming to the end of my treatment. I had 4 EC first every 3 weeks (12 weeks of treatment) then I changed onto weekly paclitaxol with carbo added in on the 3rd week. I had immunotherapy every 6 weeks too. I have 2 weeks of paclitaxol left then I will have surgery in March.
I found EC much tougher tbh but they give you loads of meds to help with side affects. Once you get going with treatment it won’t feel as scary.
I haven’t had any flu or covid vaccines. I basically don’t really go anywhere unless it’s my appointments or my dads. I just check with visitors that they are not feeling ill or been round anyone unwell. This just felt best for me during my treatment to keep safe.
I wasnt offered anything for my ovaries so I have been thrown into early menopause, I’m 41.
@letsdothis @lainy0203 thank you so much for replying to me so quickly. It’s comforting to speak to people who are going through what I’m about to start. Thank you for this information, I should get my treatment plan on Thursday so will update then.
Thanks for letting me know about the vaccines and ovary injections. I think I am really struggling with the lack of control you have. I know the doctors are looking after me and really trying to advise me for my own good.
I feel I want to go into this with my mind strong and feel if I get these vaccines and injections will be going against what I believe is right, going against my gut. I also have 3 kids so I am aware they could be bringing lots of infections home. Maybe I would get the flu vaccine.
Where do you live? I live in Glasgow, Scotland.
Thanks again x
@mlm
I am sorry that you have been diagnosed with tnbc but glad you have found this very supportive group.
I can only reiterate what @letsdothis and @lainy0203 have said. I was diagnosed just before Christmas 2023 and found the worst part waiting to start treatment. Once I started treatment I felt that the chemo was doing its job and I could actually feel the tumour shrinking. I had a 65mm tumour, grade 2 with no lymph node involvement.
I finished my Iv chemo in July. The Paclitaxel I was fine with but I found the second half, the EC wiped me out more but it was doable. I found going out for walk, even just 10 mins helped. The chemo team were excellent and can give you drugs for any side effects you may have. Once you start treatment if you have any concerns just ring them.
I had my single mastectomy in September and radiotherapy in November. I am currently on oral chemo until April which is very doable so far. I was unable to have the stand alone immunotherapy as I had pneumonitis in my lungs so my Oncologist put me on oral chemo instead. Dont be afraid to ask questions, write them down when you think of them. I always have a list of questions when I see my Oncologist.
I had the covid jab prior to starting treatment and once on chemo I made sure I didnt see anyone with coughs and colds and got used to wearing a face mask again which gave me peace of mind.
I found it was good to talk to my friend who is a Counsellor. I think if you contact Macmillan they can sort this out for you if you felt that would help.
Take care xx
I live in Glasgow too. I get my treatment at the beatson.
You need to do what’s right for you with regards to vaccines. Just keep yourself safe away from sick people and you should be fine. I know it’s difficult with kids. I don’t have any so didn’t have that worry.
I’m in Cardiff, South Wales.
I find it hard too that its so out of our control and we just have to have faith in the drs and hope treatment works. There are so many women who have come out the otherside and have lots of advice to share.
How old are your little ones. Mine are 11, 8 and 4. Its the 4 year old who is a walking germ! What can you do?!
I told my nurse i quite “enjoy” chemo and find am calm and relaxed there. I asked if i was odd for saying that but she said i was so emotional and anxious before i started it makes sense as i just wanted to get on with it. I quite enjoy having to sit and rest. I have snacks around me, a book and netflix etc and i take a fleece blanket with me so i sort of feel rested there and grateful for the treatment.
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@letsdothis My kids are 13, 10 and 8.
Bless them. They still don’t know, waiting on the start date for the treatment plan before telling them.
Any advice on how you told your kids?
Here is my treatment plan
Phase 1 (12 Weeks)
• Carboplatin – Every 3 weeks (3W)
• Paclitaxel – Weekly (W)
• Pembrolizumab (Immunotherapy) – Every 3 weeks (3W)
Total: 4 cycles over 12 weeks
Phase 2 (12 Weeks)
• Epirubicin – Every 3 weeks (3W)
• Cyclophosphamide – Every 3 weeks (3W)
• Pembrolizumab (Immunotherapy) – Every 3 weeks (3W)
Total: 4 cycles over 12 weeks
Followed by:
• Surgery
• Radiotherapy
Phase 3
• Pembrolizumab (Immunotherapy) – 9 cycles: every 3 weeks I think
Is there much time between phase 1 and phase 2?
I’m not sure how it goes between cycles but I had EC first so after my last EC I had my 3 week break before moving to paclitaxol. That was because I always got 3 weeks after each EC. I’m not entirely sure but speaking to friends I’ve met through chemo they had pac first and didn’t get a break before EC just moved into a week later.