Can you beat TNBC with chemo and no immunotherapy?

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Hi, I have recently been diagnosed with grade 3, stage 3 TNBC. My oncologist initially offered me immunotherapy alongside chemo but in our latest meeting he said this particular immuno drug has been shown to have very serious side effects in younger women (I’m 31). I’m wondering if it is possible to still get a good response just from chemo alone. And if it doesn’t respond does anyone know what happens then? Could they try the immunotherapy at a later date? Any advice or experience welcomed, feeling very scared x 

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I certainly hope TNBC can be beaten without having immunotherapy as I was treated with a lumpectomy then chemotherapy and radiotherapy. However, not having immunotherapy wasn't my choice it was just that it wasn't available as treatment in April 2023 when I was diagnosed.

    I can see that you've already found, joined and posted in the breast cancer forum and had some replies. Hopefully, they've helped answer your question.

    It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hi  , I know I have also replied on another thread. 
    TNBC isn’t a homogeneous condition as it just means the cancer doesn’t have receptors for oestrogen, progesterone or human growth hormone. I know from the other threads that you have been offered Pembrolizumab. This particular immunotherapy is a PD-1 inhibitor. Amongst the various sub-types of TNBC are cancers that use something called the PD-1/PD-L1 pathway to hide from the immune system. In effect, the cancer has copied the mechanism critical organs use to hide from the immune system. So, if you have this type of cancer (as I also have), your immune system doesn’t see it as a threat so doesn’t do anything about it. About 15% of TNBC is of this type, so Pembrolizumab and similar drugs aren’t (and can’t be) offered to everyone with TNBC. Arguably those of us who can be offered it are lucky, because there are generally fewer treatments for TNBC than other forms of breast cancer. If your immune system responds well to it, but not so well you succumb to a load of adverse consequences, it has the potential to be a game changer.

    Pembrolizumab has been around for around 6 years, initially used in other cancers that use the same hiding mechanism (initially melanoma and small cell lung cancer). It’s been authorised for TNBC that passes the relevant screening tests for not much more than a year, initially for metastatic TNBC and more recently early stage TNBC greater than 2cm and/or with lymph node involvement. 

    This is usually a highly aggressive form of cancer. My own had spread to my liver despite being under 2cm and not in my lymph nodes, simply by invading a blood vessel. Whilst I have had a bit of a rough ride on Pembrolizumab, as I have had some serious immunotherapy related adverse events, I saw it as my best and possibly only chance of a durable remission. I had had adjuvant chemo (4 rounds of EC and 12 weeks Paclitaxel) prior to the oncologist realising it was in my liver. I don’t think the chemo had made much difference for me. Despite everything that’s happened, it’s shrunk my cancer considerably and I don’t regret my choice. I just regret not having recovered enough from the adverse events to be able to have more pembro. 

  • Thank you so much for sharing this. I have probably been focusing too much on the possible adverse events of pembro and not enough on its benefit. It’s reassuring to know you don’t regret taking it. I hope you make a full recovery soon

  • That’s good to know thank you. Congratulations on beating it! And I will update my profile 

  • Hi Mbristow,

    I'm sorry to hear about the diagnosis, I'm also in the same boat as you (31 with grade 3 tnbc). I'm yet to have my oncology appointment I'm hoping I'm offered the immunotherapy (not all TNBC types are offered this, something to do with protiens). In the end what did you decide on? 

    I'm hoping you've started treatment and are on the road to recovery x

  • Hey Uzma, 

    So sorry to hear this, it’s such a hard blow to receive the diagnosis. For me, waiting for the treatment to start was the hardest part so far, so I hope you’re coping ok and have lots of support. 

    I decided to take the pembro.I will try to outline how I decided in case it helps you: firstly I requested a follow-up with my oncologist to ask more questions and they told me they routinely monitor bloods very carefully and at any sign that the liver, thyroid etc was starting to function differently they would immediately stop the treatment. I read the clinical trial paper (keynote-522) and noted the potential benefits, and weighed this up with the potential risks which I decided, for me, were mostly things I’d rather live with than the cancer. I also spoke with a couple of people in their 30s who had finished a full course (12 months) of pembro with no side effects. And then of course, reading the helpful messages on this board and others on this MacMillan community about pembro. 

    I‘ve had 2 rounds of pembro now and so far haven’t had any side effects (and my bloods haven’t shown anything weird yet) so I’m happy with my decision so far. Someone told me at the time to make a decision and then never look back, so I could start treatment feeling positive and confident and that is what I have tried to do! 

    I hope this is helpful, please feel free to reach out any time you want to chat. Sending you lots of strength and positivity x

  • If it’s any help, I don’t regret trying pembro even though I have had a serious immune adverse event on it that took out my thyroid, and did permanent damage to my kidneys and lungs. They tend to hit with no warning - it’s not a gradual build up. Still on steroids almost 4 months later but my team have been excellent in managing the issues and giving me the best recovery they could. .Hoping it works perhaps slightly less well for you!

  • Hello, I've recently had a lumpectomy following 8 sessions of paciltxil and carboplatin  (reduced from 12 due to peripheral neuropathy) then 4 sessions of EC. My 3 lymph nodes removed were clear, how did they find it was in your liver? That must have been a shock.  My lump removed didn't have a complete response, which is disappointing. 

  • I had adjuvant chemo after my lumpectomy- 4 rounds of EC followed by 12 weeks of Paclitaxel. Just after the switch to Paclitaxel, I was admitted to hospital with very bad abdominal pain. The suspicion was infected diverticulitis but they decided to give me a CT scan. Results got lost for 7 weeks with no one chasing because the problem had resolved with antibiotics. When the scan eventually turned up, it confirmed the diverticulitis with an extra “oh and by the way”. Oncologist thought the tumour was probably there before my lumpectomy. I had vascular invasion at the original tumour site, so cells had travelled to my liver through the blood stream. Of course I had nearly finished the chemo by the time I got that result. I had another scan which confirmed the chemo had had no effect on the liver tumour so that was all a bit of a waste of time. 

  • That sounds a bit of a farce with the scan results going missing, I cannot imagine the disappointment and shock. 

    I'm sorry to read that it was badly managed.