Keystone 522 protocol -anyone experiencing side effects to immunotherapy?

Hi Everyone,

I was diagnosed with TNBC stage 2 in Feb and have undergone neoadjuvent (chemo + immunotherapy) with 11 rounds taxol weekly and 3 rounds of cisplatin and keytruda. But since week 7 I’ve developed side effects to the immunotherapy. My heart rate elevated, I got breathe less, low grade fever of up to 100.5 daily and headaches. Then I developed anemia (RBC 8.2) requiring a blood transfusion, thyroditis with TSH falling as low as 0.01 and impacted liver function indicators with ASL as high as 115. Some of these symptoms were brought under control as I skipped the last round of keytruda and started low grade daily steroids regime. But now I’m discussing the next phase of treatment with on MO and I’m very concerned with continuing immunotherapy. 

According to keynote 522 trial, keytruda +AC is the next phase of treatment for 3 months - but I am very worried about the long term impact of these immunotherapy side effects. Due to shrinkage of tumor (felt through physical exam) MO is considering skipping this next phase and proceeding with surgery + radiation. But from everything I’ve read seems like immunotherapy is the magic bullet for TNBC and I’m now very concerned about recurrence. 

Did anyone else experience these side effects and discontinue immunotherapy? What was your experience with either continuing with constant medical intervention or skipping - please share? 


  • nume
    nume Member Posts: 71
    edited May 16

    Hi tnbct1n0! 🤗

    Yes, I was on the same protocol for stage 2A(no lymph node involvement). I had 5 Keytruda total along 15 infusions . Couldn`t have the last one because I became hyponatremic and landed in the ER for 3 weeks. Due to Keytruda I have to deal with Hypophysitis/adrenal insufficiency for the rest of my lyfe. I became steroid dependent because my stimulated immunity destroyed my hypophysis. And yes, I had RBC 8(this is the reason you feel breathless), liver enzymes affected... Low Blood Pressure, high heart rate…Had them all… It took 4 months after chemo to feel normal-ish, not 100%, again.

    I had double mastectomy with reconstruction on 28th of February, 2 weeks after the hospitalisation and 2 months later one of my sutures does not heal because I`m taking Hydrocortisone.

    I wander everyday if something could have been done to prevent this.

    On the good/great side, I had pathological complete response: no cancer cell found, no further treatment needed.

    I really don`t know what I would have done if I knew what the repercussion was to be… Probably I would have had it anyway. But you should know what my MO told me: people who have strong reactions to immunomodulators tend to have PCR.

    Today I saw on youtube a young man treated with Keytruda for stage IV melanoma. He had a thyroid storm and had to stop the chemo for the time being but after 73 days of treatment(I do not know how many infusions for melanoma it means), he had no tumor detected. His MO told him the same thing: stronger the reaction, better the outcome.

    I can tell you for sure that you will feel better, you will be ok🤗

    If you have any other question, I will be happy to reply. I also had a long thread that I kept as I was approaching the end of the treatment: Plan to decline last chemo


  • nume
    nume Member Posts: 71
    edited May 16

    …forgot to mention: after the first 2-3 infusions, I had all along supplements for the liver, for anorexia, magnesium+B6, Vitamin C 1g/day and D3 2000U/day, once 7 day antibiotics and Neulasta for neutropenia… Trying to normalize my blood values… which was basically impossible.

    Also wanted to mention physical exam could not detect the PCR. At the end of treatment I could still feel the tumor bed measuring 1,2cm down from 3cm but there was no cancer cell found on the anatomopathology rapport after surgery. On the PET CT before the surgery though there was nothing found.