TNBC diagnosis in April

Hi,sorry to hear you are going through this.if it helps immunotherapy is meant to be very effective for tnbc it is a relatively new treatment I believe.I opted for immunotherapy along with chemo and I had no issues throughout the 17 rounds (got one round every three weeks) I did however develop under active thyroid  but this is managed by taking a thyroid tablet daily which really isn't an problem.my understanding of immunotherapy is that it boosts the immune system to attack the fast growing cancer cells but in doing so there is also a chance that it can also attach healthy fast growing cells in body so it can cause other issues.I personally would recommend,but do your own research and/or ask doctor/oncologist questions about it and how it might effect you given your current health etc so as you can make an informed decision.I was 33 when diagnoised with tnbc and had no other health issues prior to starting it .you will get regular bloods done prior to getting it and docs will decide to give it based on this every three weeks.You can also choose to stop taking it if you decide to at any time but think it is recommended to get it for 17 rounds.As for side effects like being sick or that I had none with it.I believe side effects like that are not very common with immunotherapy most people can tolerate it very well.best of luck what every you decide to do 

Thanks for your response Breast. Much appreciated. I've done my research and spoken to consultant but still feel betwixt and between. Glad to hear the treatment well for you. Thanks again G

I was in a slightly different position as I was offered Pembrolizumab for metastatic TNBC. As you probably know, it’s a PD/1 checkpoint inhibitor. Our cancers are using the PD1/PD-L1 pathway to ‘hide’ from the immune system. The drug makes the cancer visible to the immune system, but also removes the immune privileged zones around critical organs, so side effects can include serious organ damage. I had 6 doses. It significantly reduced my liver mets to the point where I was left with what was probably scar tissue, which was ablated. Almost 2 years on from having to stop treatment, I remain in remission. Ir also caused an acute kidney injury - which is why I had to stop treatment. That needed 9 months of steroid treatment to recover, but it did recover. I also lost thyroid function and have to take levothyroxine for life. I had a myriad of other issues from inflammation which mostly fully resolved. Any regrets? Absolutely none. I almost certainly wouldn’t be here now if I hadn’t taken it. The care my oncology team took in monitoring me and getting me through the issues was exemplary. 

Thank you for sharing your experience. I hope remission is long term for you G

So do I!

Hi Everyone I am in the same boat as gailys starting treatment next week and need to know if I want to go with the immunotherapy. My oncologist wasn’t keen on it as she had quite a few patients have serious side effects and highlighted the downsides of it but said she would be supportive of it if I wanted to use it. She thought it might be great for younger patients. I am really keen to get people that have used this prospective on it. I want to take everything going to beat this as I am young mum of 4 kids but I don’t want to take something that may hinder any treatment time. Like to know anyone stories the good and the bad and the ugly. These chat rooms are great 

Also I am at a advanced stage so I am aware that I need to to get kicking it’s arse asap.

Hi sorry to hear this.l am surprised to hear the oncologist was against it.my oncologist didn't really say either way but did say that this is now an added treatment for tnbc and shows some positive results and because tnbc is aggressive and unlike some other types of breast cancer where you can take hormone drugs chemo is our only option along with surgery and radiation so I'd be all for getting immunotherapy to boost chance of attacking it.i have completed all 17 rounds and no serious side effects.the way I look at it is you will be closely monitored and can stop if needs be.I got it every 3 weeks and tbh I woundnt even know I had it,no side effects thank god and no need for premeds or that either.best of luck with your treatment now what ever you decide.hopefully it will all work out for you.

Hi, I wouldn’t say she was dead against but was very worried about the side affects as she had a few patients take serious side effects. I went away and got as much information from here and other sites and the company that makes the drug and another oncologist and everyone highly recommend it. I start yesterday with my first one and I just thought if I don’t through the book at this now and it doesn’t work I would Always have a what if. I am hoping that it works and along with the chemo and that I have miminal side effects. 

That's great I'm glad to hear you made a decision.You are dead right and if immunotherapy doesn't work out for you at least you give it a go .Im sure you will do great. The chemo is tight going at the start to figure out how youl be feeling n how to beat deal with side effects but it will all soon settle down and you will get a wee routine going.I auctually kept notes on my phone of each session n then could see a pattern so I could look back for the next one to remind myself of when to take tablets n how I felt .I always found the worst was when I stopped the steroids and anti sickness tablets but then after few days I'd start to come round to myself again.

I hope your side effects will be managable and the chemo and Immunotherapy react well to the lump.Tbh it is doable ,there will be days where you feel like crap but then youl soon start to feel better again.best of luck, you've got this!!