Hi
I was diagnosed with tnbc at the beginning of the year. I am very small breasted and found the initial lump myself. Grade 2 lobular tnbc.
I am getting so stressed waiting for my chemo and immunotherapy to start on 23rd Feb. I can physically see my tumour has increased in size and Im worried about spread to lymph nodes, which were clear.
Did anyone else notice their tumour had increased in size while waiting for treatment.
Thank you my tumour has visibly increased in size so I know its not in my head. I’m just desperate to get my treatment started.
How are you coping with your treatment, have you had any bad side effects xx
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Hi diamonddapple I was diagnosed with TNBC grade 3 stage 2 third week in September ‘23, no evidence of spread to lymph nodes. I didn’t start my immunotherapy and chemo until 14th of November whilst waiting for all scans and biopsies to come back. During that time I could feel my lump getting bigger and more pronounced. I cannot for sure say that this was real or if indeed as I suspect it was all in my head! I was pressing for treatment to start asap as I wanted to ensure it didn’t spread to my lymph nodes. The BC team reassured me that this waiting period was ‘normal’ and not to worry. The very good thing I noticed within weeks after starting treatment was that I could actually feel the lump reduce. I guess we have to trust that the BC team know what they are doing. You will also note from many messages on this forum that the waiting to have a concrete plan and stating treatment is the hardest part of this journey we are all on. Virtual hugs and reassurances to you 
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Hi
I was diagnosed with tnbc at the beginning of the year. I am very small breasted and found the initial lump myself. Grade 2 lobular tnbc.
I am getting so stressed waiting for my chemo and immunotherapy to start on 23rd Feb. I can physically see my tumour has increased in size and Im worried about spread to lymph nodes, which were clear.
Did anyone else notice their tumour had increased in size while waiting for treatment.
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Hi diamonddapple, my treatment plan: 3 weekly Pembrolizumab, Carboplatin, Paclitaxal for 12 weeks at 3 weekly cycles plus weekly continued Paclitaxel. My side effects were very tolerable, felt mostly like a bad hangover to begin with. There is defo an accumulative effect with tiredness and generally not feeling too good. All was very tolerable, now finished this first 12 weeks of treatment. Ready to start this week on EC plus Pembro 3 weekly for another 12 weeks, am on the home straight so 
all will go well. After that Mastectomy and radiotherapy. This plan to start with felt very daunting and un doable but take it one day/week at a time and you’ll be surprised how well you can cope and how quickly the time passes. This IS achievable for you xx
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Hello I have just registered and read your update Gerry. I am TNBC too. My tumour is 11mm grade 3. I have a lymph node with high grade DCIS and another with metastases. My treatment starts on Tues 13th Feb. It sounds v similar to yours but slightly different ie Pembroluzumab every 3 weeks for 8 doses, Paclitaxel and Carboplatin 1st 4 cycles every 3 weeks and then EC 2nd 4 cycles every 3 weeks.
Good to hear you have been feeling well enough and that the treatment is working. Any tips? I’ve just realised I’ve hardly looked into cold capping - I expect that’s another part of this forum 
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Hi Diamond Sorry to hear you’re struggling with the wait. It really is super tough. To be honest, I haven’t wanted to feel my TNBC lump since I found it much. I knew I’d be thinking like you. I did meet my surgeon today and cheekily asked if it had grown since they first scanned me as I too am waiting to start treatment I realise she didn’t actually answer me. I am sure they are doing everything they can to get going with your treatment - I’m sure that’s what they are prioritising.
Keep in touch though Diamond with your updates xxx all the best
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Hi,
I had tnbc and have been clear since July 2022. I completely understand where you are coming from and it may seem to be getting bigger. I think I had a similar concern, but after speaking to the breast care nurse, she said it was quite likely that you keep feeling it now you know it’s there, so can make you think it’s getting bigger. Try not to touch it, in case you are making the area inflamed. The team will do everything to make sure they treat every area wuth the chemo etc. Sending big hugs. Try not to worry, easier said than done, I know. Xx
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Hi tiger lilly
I know everyone keeps saying the worst time is after being diagnosed and waiting for treatment. Im also worried about catching any illnesses which could delay the start of my treatment. Ive taken to wearing a mask when I go into shops and Im constantly using antibac xx
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Hi gerry22
My initial treatment is the same as yours, chemo and immunotherapy every 3 weeks for 4 sessions.
Then I have my mastectomy and after recovery further immunotherapy and radiotherapy.
My tumour is/was 5cm.
Im glad your treatment wasn’t too debilitating but then I suppose everyone responds differently to treatment. Did you just carry on as normal in between your treatments as I would be worried about infections, which I am already .
Good luck with the next stage of your treatment and keep me updated xx
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Hi Donna2510
So pleased you are over your treatment and keeping well.
Its a very scary time going through this journey as everyone knows.
What sort of side effects did you have
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Hello i can completely relate to all these posts.
I was diagnosed on 24th Jan and waiting for treatment is already driving me insane.
It cant come too soon x
Caroline
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Hi Diamonddapple,
The side effects really depend on what chemo you have. There are so many different types, all with their own side effects and everyone reacts differently. Do you know what you’re having? The one thing I would advise anyone, would be to be as active as your body will allow, it really helps your mind and body to get through the treatment. On EC i had a metalic taste most of the time, apart from that, I don’t remember having many other side effects really. I did start with cold cap, until I had an allergic reaction to paclitaxel, then sacked that off and lost my hair. Lising your hair can be very daunting, but also very liberating because you then have control I hope some of this helps. Here if you need more info, or just a chat. X
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Hi Donna2510
My treatment plan is very much the same as yours. Pembro with Carboplatin and Paclitaxel x 4 every 3 weeks then Pembro and EC X 4 every 3 weeks.
Then surgery then more Pembro and radiotherapy.
I have a horse so will definitely keep active, although my main concern eill be infection.
Did you tend to be extra cautious during treatment. Im already wearing face masks and using anti bac as I dont want anything to delay the start of my treatment xxx
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Your treatment regime is the same as mine lillytiger. I start 10 dayz after uou so would be very interesting to compare x x
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Ooh that’s good to know. Definitely happy to link up. I bought a wig today. It might be a bit premature. I love it though and might practice wearing it over my real hair lol! I saw my friends today and they loved trying it on. We laughed lots. Who’d have thought I’d be so happy with something like that in the middle of this nightmare. Today I’ve had a kidney test. I do worry about telling people what I’m having done in case other people are not having the same. We are all just doing what they think is right. Having an ultrasound tomorrow to check all my markers are good. Then ECG day before I start treatment. What going on with you Diamond? Xx
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Hi Duamonddapple
I wore a mask in public during my treatment, mainly because Covid was still looming. It’s a good idea though because an infection can put you in hospital. I have a friend having chemo now and this has just happened to her, so be careful to not be in large crowds. Try not to worry though, you have enough on your plate right now. Xx
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Im awaiting a telephone call from the Chemo Nurse to go through everything with me so I assume she will discuss any further tests like ECG xx
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Hi Gerry22
Did you start your EC and Pembro this week? If so, I hope you are feeling ok xx
I had my first of 4 x 3 wkly EC and Pembro yesterday. All went well but as it was a new regime I have to say that I was anxious of the unknown effects. Slept well last night, feeling a little nauseous today but not too bad. Just to respond to some questions, during the first 12 weeks of weekly paclitaxal and three weekly carbo and Pembro I did manage to function fairly well. I am lucky in that I am retired (60) with a very supportive husband and two grown up kids. I’m not sure I would have found it easy to work or put myself under pressure to be active but didn’t need to so took the easy option 
My biggest negative side effect was a constant metallic taste in my mouth and unsettling taste bud changes! I did get a skin rash reaction to the Pembro twice, the first time I used Udderly smooth moisturiser (recommended by Chemo nurse) this worked very well. The second time I got the rash I must have scratched it in my sleep and caused a nasty skin infection which resulted in a trip to hospital and antibiotics. The other issue to stay on top of it to try to prevent mouth ulcers, on top of feeling rough these can rely impact on eating and swallowing. Oncologist prescribed Corsodyl Gel mint flavour, alcohol free (shame!) .2%. This was good but did not prevent ulcers coming, she prescribed gelclair two weeks ago I have found this very very good, a bit expensive if not prescribed. I didn’t try cold capping as I hate the cold so chickened out 
Hair started falling out after week 3, had it shaved and felt much better afterwards.
Apologies for the lengthy post!! This treatment plan is undoubtedly a lengthy one but just remember 1 day/week at a time!! We’ve got this
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Glad you seem ok so far on your new regime, keeping fingers crossed it continues.
Thank you for the tips and what has helped with the rash and sore mouth/ulcers.
I am 63 and have only been working a couple of short days a week, but I havent been to work since my diagnosis and like you I have a very supportive husband and family.
I have a horse so have worries about possible infections although there are a lot of people who can help me out.
I received my appointment letter for my first chemo session today, it brought me up with a bit of a start even though I’m desperate to get started.
What size was your original cancer and has it reduced in size do you know.
I didnt realise you were having Paclitaxel weeking and Pembro and Carbo 3 weekly. Im having all three 3 weekly.
Just think you only have 3 more treatments, how great must that make you feel xxxx
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