I'm a 36 year old female in the UK, diagnosed with tnbc in May 23. Stage 2, grade 3. There is a second tumour but it seems to be contained in one breast. I have started the chemotherapy and immunotherapy up front to be followed by surgery in the new year radiotherapy and more immunotherapy. I had my 4th (weekly) and 2nd (3 weekly) immunotherapy yesterday. When I've done 12 weeks I go onto 4 doses of the strongest chemo- I'm a bit scared of that 1. I'm using the cold cap and still have my hair for now. I also feel quite alone, I don't know anyone else my age with cancer. I would like to find a face to face support group but I'm told there are none. I struggle to rest enough as I have 2 young children and the chemo gives me awful insomnia. My main side effects and nausea and exhaustion, I also have dry skin and sensitive toes, I'm worried about nerve damage or losing my nails. I'm not sure exactly what I am asking for by being here, just reaching out I guess. Thanks for reading. Sending positive thoughts to anyone who needs them x
Hi Tripnegbreastcancer.1st timer
Welcime to the forum and sorry to hear that you have been diagnosed with triple negative breast cancer. There is a forum for people under 50 with breast cancer that you can join as well. It’s called Breast cancer of the under-50s forum.
Wishing you the best of luck with the rest of your treatment.
You will find lots of people going through similar things on here, so welcome.
I am guessing you are on Pembrolizumab and either Paclitaxel or NAB-Paclitaxel based on your TNBC diagnosis and the treatment frequencies; and that you will be switching to Pembrolizumab plus EC next? I have at various times experienced these drugs. I have metastatic TNBC. I had 4 rounds of EC and 12 weeks of Paclitaxel last year after my primary diagnosis, and am on Pembrolizumab and NAB-Paclitaxel now.
iIn my experience EC is harsher on your nails (and your hair) than Paclitaxel. I used (and am using again) a product called PolyBalm, which you rub into your nail bed twice a day. I got a bit of marking and discolouration on both my big toes from the EC, but haven’t lost any nails at any point. Paclitaxel made my toes a bit itchy and I find an emollient cream like Aveeno Dermexa works wonders. This cream was also useful when I had radiotherapy.
Paclitaxel is known to have a risk of peripheral neuropathy. It starts as a bit of tingling and perhaps woolliness in your fingers and toes. In my experience it builds quite slowly. Talk to your team if you start to experience it as they can reduce the chemo dose. I found it built up a bit more after I finished Paclitaxel and it never completely recovere, but it’s not a major problem. The NAB-Paclitaxel hasn’t made it any worse.
Hi Coddfish, thanks for the advice. I haven't heard of polybalm but will look for it- are you in the the UK? Yes I'm on 3 weekly pembro and weekly paclitaxel and carboplatin and will switch to EC after 12 weeks.
I will keep a check on tingling in fingers/toes as I go through, that is something my nurse does ask me each time I go I for chemo. I'm so sorry to hear you are having to go through all this again. I hope you are managing your current treatment regime. X
I’m 37 and am TN with grade 2 (found out in May). It came as a massive shock and I’ve still not come to terms with it properly. It feels like some kind of nightmare.
My treatment is surgery first, then chemo and radiotherapy. It’s been hell waiting for my operation but it finally happened this week Wednesday (just avoided the strikes!). The waiting was the worst as it felt like I was doing nothing and it was just left to spread unchecked.
Healing now and onto chemo is about 4 weeks. Not looking forward to it as the nurse made it really clear that the chemo is the worst bit. Going to have to ask you questions when I get to that bit.
I’ve found chatting to people on here has helped as they’ve had some good insight into the things which have most stressed me out (work, dealing with telling my 3&5 year old, not sleeping, crying none stop).
iIt’s so shit that we’re having to go through this. So shit. There was a good blog on here where one of the ladies has been documenting her journey with TNBC over the year or so. Will see I if I can find the link…..
Hi Opalfruits2001 (I really need to change my name on here as I now really regret defining myself even more by this cancer!)
Thank you for your message and yes it is so so shit. I'm glad your surgery is out the way for you- one step completed well done you! I hope you are healing well. I have such a fear about surgery, sometimes it keeps me up at night. Mine is due in January time when the chemo is done with. Do you know how many chemo/ how often? I'm happy to share with you anything that could be helpful from my limited experience so far (4 chemo sessions down). If it helps- I was terrified going to chemo but the actual chemo days themselves are not as awful as I had hyped them up to be although there are a couple of days per week when the tiredness can be hard to manage with the kids. I need to get better at taking myself for a little afternoon nap when needed! I hope you have managed OK navigating telling work and the kids. My work were amazing about everything (I've been very lucky in that respect). My kids are 8 and 5 so should understand better than yours but I'm still not entirely sure exactly what they do understand although I've tried to be open. My 5 year old talked a lot about the fact I had told her I might lose my hair (I had it cut very short in response to all this and was trying to explain the changes). However my hair is still holding on so far which may be confusing things further for her.
I hope you're OK. I know what you mean about the shock/feeling like a nightmare. For weeks and weeks it was like a realisation every morning as I'd wake up and remember and my stomach would sink. I think starting treatment has helped as it feels like I'm doing something and also removes some of the fear of the unknown. I hope you can also find some comfort and respite from these feelings. Sending love x
I have no idea the plan for chemo yet as I think they want the results from the surgery as well as my genetic tests back before they commit. Going to try to enjoy the summer holidays with my boys before the shit show of chemo starts.
The surgery was fine. Op at 1pm, out by 7pm. Two small cuts which are a little sore but nothing bad. Ibuprofen is all I’ve needed to deal with the pain. The lymph node part is more painful but the exercises are helping so far.
I’m going to cut my hair at the end of August before chemo and commit to a turban style. I’ve already warned my boys as they’ve never seen me with short hair. I feel like I have to have control over something. Have you done the cold cap? I think I read somewhere about cold gloves and socks too to help with tingling fingers and toes from the chemo. Not sure whether they work or not but anything’s worth a try?
Good plan re summer and hair- I hope you have a really lovely summer. Hair wise- I cut mine before the start of chemo in prep for it then again around 10 days ago. I've bought a hat selection in case I do lose it and have my 2nd wig fitting on Monday. You should get a wig voucher from your hospital I imagine as i did. I'm using the cold cap, it's probably the worst part of the actual chemo - like extreme brain freeze it gives me a bad headache but seems to be doing the trick. When you start it, set a timer for 15 minutes. If you can manage the 1st 15 minutes it gets easier. I'm afraid I know nothing about the gloves and socks. I take a fleecy blanket and fluffy socks to chemo to keep warm as its hard to feel warm with the cold cap on. Glad to hear about your experience of surgery- thank you, I hope your healing continues to be straightforward. I'm also still waiting for genetic test results. If you dont get one through your hospital google little lifts and request a little lifts box when you start chemo- it's a lovely treat. x