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Experience with Keytruda for early stage Triple Negative Breast Cancer


Since the standard of care for early TNBC has changed and now includes Keytruda (Pembrolizumab) with chemotherapy in the neoadjuvant setting, followed by Keytruda alone for 9 cycles in the adjuvant setting, I was wondering if everyone on the current regimen could share their experiences? How has it affected you? Have anyone experienced any serious side effects. How are you monitored while on treatment?

My wife was started on Keytruda after 4 cycles of AC, and she received 4 doses of it with Pacli-Carbo. Post surgery, she has received 6 cycles of Keytruda, bringing it to a total of 10.

Throughout the treatment, we've had numerous scares. She developed hypothyroidism after 4 cycles, and is currently on Eltroxin 100mcg for it. There have been multiple occasions of fluctuation of her cortisol value, to the point that her endocrinologist is not sure if it has been affected or not. My wife was so fed up at one point, that she decided to discontinue the adjuvant treatment, but after the recommendation of a leading breast oncologist, she opted to restart it.

The drug has just been approved for TNBC in our country, so patient assistance has just kicked in. All the previous doses were out of pocket.

She has also developed skin lesions, dry skin and dry eyes.

On the plus side, prior to chemo, she had a huge 3.6cm matted Axillary LN (the primary lump was excised prior to surgery because the first surgeon was confident it was benign). Post chemo, she underwent a reexcision with ALND, and all 18 LNs was negative. So the breast onco believes that for such a large LN to turn negative, its likely that the immune component contributed, hence his recommendation to continue with keytruda.

We now monitor CBC, Creatinine, SGOT/SGPT, Na, K, Cortisol, TSH prior to every infusion, and pray to God that the values will remain normal through it all.

I would be really grateful if anyone could share their experience on keytruda+CT.



  • nume
    nume Member Posts: 81

    Checking in after a while and found your post, breastcancerpartner

    As you probably remember I have secondary adrenal insufficiency after the same protocol, pituitary gland forever gone. I am on cortisol for the rest of my life.

    Since SAI started I found on endocrinological forums many women affected by Pembrolizumab: SAI, thyroid storm, renal failure, skin allergies, adrenal insufficiency.

    Of course most of patients are ok and do not search or enter such forums. I hope your wife will be fine.

  • Hi nume.

    How are you doing? Are you feeling okay with treatment?

    My wife was diagnosed with hypothyroidism after 4 cycles of Keytruda, but that's under control with Eltroxin.

    As you recall we were in two minds about continuing Keytruda, but when we took an opinion from a leading breast oncologist, he advised to continue it if we can afford it, because he was of the opinion that since such a large lymph node had cleared off, it was likely that Keytruda had a role to play.

    Of course, we're still constantly worried about the side effects. I believe you had 5 doses of Keytruda before your cortisol was affected? Did you experience any symptoms prior to it being picked up?

    We monitor the cortisol before every dose, and everytime it's lower than the usual I start panicking. The endocrinologist is not certain, so as of now he has given an sos dose of prednisolone in case of any fever or other stressors.

  • lexi13
    lexi13 Member Posts: 1

    My oncologist stopped keytruda after I experienced severe diarrhea and now I have pain and burning when I urinate. I have to have a CT scan and am waiting to see a urologist. They think I may have interstitial cystitis. There’s no cure for this. My daily life has been severely affected by this! How long does keytruda stay in the system? I’ve had these symptoms (diarrhea and urinary issues) since I ended my chemotherapy at the end of July! Anyone else have urinary issues?

  • moderators
    moderators Posts: 7,889
    edited October 2023

    Hi @lexi13 We're so sorry to hear about what you are going through! Are you drinking a ton of fluids? Keytruda, per their website, can limit the amount of urine made. You ended chemo or the immunotherapy (Keytruda) at the end of July? Keytruda can stay in your system for a couple of months, but these are good questions for your doctor. We so hope that the urologist can help manage the problem! Yes, this would affect your daily life for sure, so we hope it gets resolved!

  • njdogmom
    njdogmom Member Posts: 181

    I had Keytruda through neoadjuvant chemo and then one cycle after my lumpectomy. A couple of days after surgery, I had a rash on my shoulders and torso that the oncologist attributed to Keytruda. Several weeks after, I had a severe reaction - pustular psoriasis covering the palms of my hands and some on my feet and shins. I was also experiencing debilitating joint swelling and pain. I'm several weeks into this and am on high dose prednisone.

    It took quite a bit of self-advocating to even get this diagnosed. I reported it to the surgeon's office who brought it to the oncologist. i self referred to my primary care doc who sent a sample off to the lab and I self referred to a dermatologist who did punch biopsies to make the final diagnosis. The doctors are assuming the joint swelling is psoriatic arthritis but no tests have been done to confirm this.

    I can share photos if anyone wants to see. Worthy of a horror movie.

  • hopefunlive
    hopefunlive Member Posts: 3

    I have seen an Endocrinologist once and have an appointment in April for tests for suspected Adrenal Insufficency due to Keytruda. I began having problems after my 6th Infusion but still had the 7th. I ended up in the hospital 2x in Sept 2023 due to Low Blood Pressure, dizziness, fatigue, loss of appetite, & dehydration and was started on a high does of Prednisone and am tapering now currently taking 6.25-7. My Endocrinologist wants me at 5 before running the tests. I was scheduled to have 9 more Keytruda infusions, but they have been cancelled.

  • dawn68
    dawn68 Member Posts: 15

    Just tracking this thread. On Feb 28th I started on a 3 week cycle: 1 week Carbo, Paxlitaxol, Keytruda then 2 week just Paxlitxol continuing for 12 weeks. During this stage it will be difficult to tell (I assume) what is causing what side effects. After the chemo I will have surgery then Keytruda every 3 weeks for a year. Given this is a recurrence I am really excited about the fact that those of us with TNBC now have an option of immunotherapy to prevent recurrence but questioning if it is worth it if it causes other lifelong health issues.

    Quite interested in everyone's experiences with Keytruda side effects. Was anyone able to finish taking Keytruda for a full year after chemo? And if so, how are you doing now?

  • cookie54
    cookie54 Member Posts: 655

    @dawn68 I am currently on Keytruda , just had my 29th of 35 scheduled infusions today. When I am finished I will have been on it just shy of 2 years. I am happy to say I have not had any issues so far from Keytruda. As you can see in my bio I am Stage IV but holding steady on Keytruda and Xeloda.

    From my experience with TNBC and now MTNBC it is worth it give it all you got upfront! I did and still wound up here today. Obviously my cancer is not your cancer as we are all different .However we are all aware of the possible aggressive nature of TNBC. I would have a good discussion with your MO and weigh the risk vs the measure.

    Wishing you all the best with your treatment plan.

  • dawn68
    dawn68 Member Posts: 15

    Thank you @cookie54, you've responded to me on a different question on another thread as well. Your experience has been very helpful, appreciate you taking the time to share with us.

  • cookie54
    cookie54 Member Posts: 655

    Your very welcome!