Triple negative cancer at 39 stage 2

I am sorry you find yourself here and can understand the concerns about going through treatment when you have a little one to care for. The cycles will soon fall into a rhythm and you will be able to work out which are your better days. I am guessing you are starting with Pembrolizumab every 3 weeks, Paclitaxel weekly and possibly carboplatin every 3 weeks? I haven’t had carboplatin but have had the other drugs. Pembrolizumab doesn’t usually cause any major side effects unless it causes your immune system to start attacking things it shouldn’t. So any effects come on suddenly and obviously but the major complications are supposedly rare. Do report anything that feels suddenly different as the sooner you start steroid treatment the better your recovery (pembro damaged my kidneys, thyroid and lungs). 

Weekly paclitaxel wasn’t too bad for me but I felt like I was never quite right as you don’t get any recovery time between cycles. Bits of diarrhoea here and there, achiness, loss of taste for a couple of days each week, just generally feeling a bit off. 

I am guessing you then move to EC every 3 weeks along with the Pembro. The side effects of EC were similar but hit me a bit harder, balanced with having the second half of the cycle to recover. Both regimes caused hair loss. I also hated the Filgrastim injections given with EC to boost white blood cells - they made my bones hurt.  I didn’t have sickness or even nausea with either drug. A lot of people will advise taking the anti sickness meds they give you, but beware these can lead to constipation. I wouldn’t advise taking them unless you find you need them. 

The list of side effects you might get is long - but I doubt anyone gets all of them or gets them all the time. Oncology are very good at giving you drugs to counter whatever you are experiencing, and will also adjust the volume if it’s proving too toxic. 

Aww that’s nice there seems such much available for support which is great for us

I could have written your post myself! I am also 39 and I have grade 3 triple negative breast cancer. I have an 11 year old son.

I was diagnosed at the beginning of March. My treatment plan is also the same as you by the sounds of it. I have my third chemo session this coming Tuesday and I have them weekly for 12 weeks. Then once every 3 weeks for 12 weeks. Then surgery, then radio then possibly more chemo. Have you had the clip inserted into your breast yet? I found all the scans and procedures very draining and just wanted the chemo to start. My tumour was 6cm by the time I started and had doubled in size.

Having said that I was very scared before my first chemo! I am lucky in that it hasn’t been as bad as I imagined! I am a single mum and my two amazing sisters have helped with my son. Apart from feeling extremely tired and having bad acid, I have been ok. 
Do you have support with your little one? I have found days 2-5 are my most tired days. My family have cooked up frozen meals for me to use when I am too tired to cook properly. 
My sister is a nurse so she is always nagging me to keep moving as we are high risk for blood clots, so that’s important to remember. Make sure you are moving and walking every few hours! 

I hope all goes well for you and I’m happy to answer anything I can, if I can! :) 

Oh wow it’s amazing how everyone is just in the same boat. I was shocked I found a lump on a Monday evening went doctors NHS gave me an appointment for the scans 3.5weeks later but I got inpatient so I used my company private healthcare called them the following Monday got seen the next day they did everything in one go scan, ultrasound, biopsy and tag. Week later biopsy revealed cancer all so sudden, over last couple of weeks I’ve been for pet scan, another biopsy on another small lump underneath main one. But everything’s done and to start treatment same as you 13th May 25. I found out it was cancer on the 1st April 25 around 2.2cm so with chemo 6 weeks later I’m hoping it hasn’t grown dramatically. That’s so good you’re doing well I really hope that continues for you. Yes I’ve got lots of family help which is good, and same they are preparing food for freezer for me already! Did you get told anything about after chemo you can’t have skin to skin contact with your child? 

Louise 

Hi there 

I’m starting with carboplatin, placitaxel, and Pembro, every week for 12 weeks. And then move onto every 3 weeks EC and pembro for 12 weeks. A grand told of 24 weeks of treatment. How did this affect your lungs, kidneys, and liver then? I’ve been told this can happen but what causes do you have with that now. It’s very frightening because it kills cancer but can seriously damage other parts of body. I’m having this pembro all the way through because it boost your immune system. 

Louise 

The type of cancer we have exhibits a high level of PD/L1 (programmed death ligand 1). It’s a protein that acts as a checkpoint to the immune system, preventing binding to the protein PD/1 that is on the immune system’s T cells. This mechanism normally creates a shield around critical organs to stop immune system activity. A sort of Harry Potter invisibility cloak. Our cancers are mimicking this to hide from the immune system. 

Pembro destroys PD-1 systemically through your body. When it works well for you it allows the immune system to see and therefore destroy the cancer, as it did for me (I achieved a full remission from stage 4 cancer, which has held so far). 

Unfortunately it also removes the shielding on your endocrine system and elsewhere. For me that led to an acute kidney injury causing nephritis, which presented as very high creatinine levels and extreme dehydration. When I was in hospital with that they tested many other things and found I had also lost thyroid function. I was treated with a 9 month course of high dose steroids, during which my kidneys fully recovered. I need to take levothyroxine for life as my thyroid can’t recover. During the steroid wean I started to experience breathlessness which was diagnosed as pneumonitis, probably dating back to the same incident. That also improved over time. 

It didn’t damage my liver - my liver was the location of the metastatic spread. 

1. Hiya 
   I’m so sorry to hear of your diagnosis and can completely understand how overwhelming everything must seem right now and what a shock this must have been. It really is so much to process and can feel very lonely. I am 35 and was diagnosed with stage 2, high grade triple negative in feb and I too have a 3 year old. It sounds like we have been given similar treatment plans. I will be having chemo until August, followed by surgery and then immunotherapy. Potentially radiotherapy too but not sure yet. I currently have a 3 weekly treatment of paclitaxol, carboplatin and immuno and the two weeks in between I have just paclitaxol. I have four cycles of this then it goes down to 3 weekly EC, Carbo and immuno. I know everyone experiences side effects differently but I wanted to tell you that I have found treatment very manageable so far. I am currently on cycle 3 so do have a way to go (8 in total) but so far my side effects have been much better than I expected. I do get very tired after my 3 weekly treatments and can get some nausea but I haven’t been sick and I have still been able to get out with my 3 year old and keep up with him and do everything I have wanted to. It can be very overwhelming when they list all the side effects to you and left me feeling omg how am I going to cope so I just wanted to reassure you really that it may not be as bad as you are expecting. I really hope it is the same for you. Good luck with everything. I’m here if you want to chat x

Hi Lisa 

thanks for writing and it very helpful and positive to hear your managing well especially with your 3 year old as well. I started to get concerned because of the fact I’m facing 12 weeks of chemo (CTP) and then 12 weeks of (PEC) once every 3 weeks grand total 24weeks of treatment. But hearing everyone’s stories it can be smooth running or hurdles all depends on the person. I’ve turned a corner now and want to be strong and positive yes this is something I’m facing but it’s not stopping me I want my life to carry on. I’ve accepted I’m going to loose my hair although I’ll find that hard I’ve already started getting scarfs and got my eyebrows done to make me feel better. 
Feels lovely to reach out to everyone on here. 

Louise