Value of Adjuvant Pembrolizumab?

Going through breast cancer treatment Targeted therapies
1

I’ve been in treatment since September 2023 (14 months now) and it’s the final few months. Just had my third cycle of adjuvant Pembrolizumab, 2 more to go, and I’m wondering whether to stop.

Diagnosed with triple negative breast cancer stage 2 grade 3 in 2 tumours in one breast in July 2023. Treatment plan was/is:

4 cycles neoadjuvant chemo (carboplatin +paclitaxel ) + immunotherapy (pembrolizumab)
4 cycles chemo (EC) + pembrolizumab
Surgery 2 X lumpectomy with therapeutic mammoplasty
4 weeks radiotherapy
5 cycles adjuvant pembrolizumab

As you can see I’m so close to the end but I’ve really struggled with the immunotherapy, which made me very ill with my thyroid and joints at the Neoadjuvant stage. I’m really struggling now with fatigue and depression and joint pain. I thought my thyroid must be about but the results are fine.

Pembro is such a new treatment, they know it significantly improves outcomes for triple negative (37% I think) but they don’t know how valuable the adjuvant stage is in comparison to the neoadjuvant stage. My oncologist (who is also a clinical researcher) says ‘emerging data’ suggests the benefit comes mostly at neoadjuvant stage, and the adjuvant pembo is less valuable, particularly if the patient had a complete response. I did not have a complete response and although they say it was a really good response, I still had cancer in the breast in 3 very small residual areas though my surgeon was confident it came out with good margins.

My oncologist says that we need to weigh up the costs and benefits of continuing pembo and now it seems to be costing me a lot and he’s uncertain of the benefit. My last cycle was delayed because I was unwell. I asked him for data and he says there isn’t anything solid because it’s so emerging.

I have a son who just hit the terrible twos big time. My relationship is falling apart under the pressure of me spending the last year in cancer treatment while we also had a baby to look after, and I’m now back at work in a pretty high pressured job 32 hours a week after doing a phased return since September. I’m exhausted, anxious, stressed and depressed. I can’t tell with my physical and mental health symptoms how much of this is the pembrolizumab and how much is a result of everything that’s happened and how stressful and hard life is right now. The only thing I’m sure is the Pembro is the peripheral neuropathy I have got and am now on steroids for.

I need something to give and I’m about to go onto antidepressants.

I am wondering whether to stop the Pembro. I rang BC Now helpline and the clinical nurse said she’d heard the same as my oncologist about adjuvant Pembro being less valuable. But then if it comes back will I hate myself and think I should have just powered /crawled through the last two cycles??

I don’t know what to do. Anyone in a similar situation or have thoughts? Sorry for long post. Value of Adjuvant Pembrolizumab?

1 Like
2

Hi @hannah_s,

I’m so sorry to hear what you’re going, and that no one has responded to your post yet. Hopefully my message will ‘bump’ up your post and you’ll get a response soon.

In the meantime, if you need support please reach out to us on our free helpline 0808 800 6000.

Sending love,

Alice

3

Hi Hannah

I am sorry to hear what you are going through. Treatment side effects and consequences are very difficult to deal with. I am not in a directly comparable situation but I have experienced Pembrolizumab.

I was diagnosed with what was thought to be early stage TNBC in February 22. I had a WLE and SLNB, no lymph node involvement but vascular invasion at the tumour site, 18mm grade 3 tumour. I then had 4 cycles EC followed by 12 weeks of Paclitaxel. I became ill early during the Paclitaxel with diverticulitis and had a CT scan. The results got somewhat delayed but when they did come back, to everyone’s surprise there was a secondary deposit in my liver. After a few months of faffing, an unsuccessful liver ablation and more biopsies and more progression in my liver, I went onto the metastatic Pembrolizumab protocol. This was intended to be 6 months of Pembrolizumab with NAB Paclitaxel followed by 18 months of pembro.

After the 6th pembro infusion, I had an immunotherapy related adverse event. Kidney nephritis, thyroid and lung damage. 9 month course of high dose steroids to rescue things as far as possible. Meanwhile, the pembro had allowed my immune system to take me to an almost complete response. I had to stop treatment due to the severity of my issues, but as things were stable 4 months later, they reablated the residue of the 2 surviving mets. I have been in remission ever since.

I am convinced I owe my life to pembro, but the consequences will also stay with me. Although the acute issues largely resolved, I still suffer with the effects of inflammation along with the effects of 9 months of high dose steroids.

I don’t think Pembro is likely to be the cause of your peripheral neuropathy - that one is likely an after effect of Paclitaxel. I have it too. But pembro can lead to your immune system damaging organs as happened with me. Unfortunately our cancers express PD-L1, which binds with PD-1 to enable the cancer to hide from the immune system. This is the body’s mechanism for creating immune privileged zones around critical organs. So when you are treated with a PD-1 checkpoint inhibitor like pembro, it can lead to your immune system going a bit mad.

All the best.

1 Like
4

Thank you for your response. I do think the Pembro is a game changer. It’s no easy option though sadly