Keytruda Experience - 1st infusion 5/24/22 - Second infusion on hold

[dico]

In an earlier post I documented my husband Ed’s experience with his first Keytruda infusion. There have been a few updates since then.

Ed started developing strange symptoms around day 14: tremors in his arms and legs, voice cracking and hoarseness, irregular heartbeat, extreme weakness and weight loss.

Ultimately, his MO put a hold on his second infusion, put him on 80 mg of prednisone and ordered several tests (blood, brain and heart). The first set of blood tests came back a couple of weeks ago indicating an overactive thyroid (TSH= 0.02, T3= 317, T4=4.5). A retest two weeks later still indicates a thyroid issue, but different…maybe secondary hypothyroidism (TSH-0.08, T3=36 and T4=1.0). Hoping it is just a temporary thing that will correct itself. The EKG came back “abnormal” but nothing that seemed earth shattering. Other tests have been scheduled but are still a couple of weeks out.

The good news is that Ed is feeling great right now. The 80MG of prednisone has eased all his aches and pains and increased his appetite and energy level. The tremors and the hoarseness have improved significantly as well. Of course he can’t stay on the prednisone forever, but it is nice to see him feeling good again and doing some of the things that he enjoys. He has been quite miserable since December when he switched from Zytiga/Prednisone to Xtandi (his MO took him off of Xtandi after 5 weeks but he never got his strength back….until now).

We are hoping that he will be able to resume Keytruda once we get to the bottom of the thyroid and heart issues, but at this point we don’t know. The one infusion that he did receive lowered his PSA significantly.

[tango65]

Most probable a thyroiditis caused by Keytruda. This link has info about thyroiditis and Keytruda and other possible issues with Keytruda.

accessdata.fda.gov/drugsatf...

[dico in reply to tango65]

Thank you. This is helpful.

[tango65 in reply to dico]

Your are welcome. Best of luck with the treatment.

[GAdrummer]

Welcome to the Club, Super Responders to Keytruda. The link gave a lot of technical words that may need translation. The prednisone will be switched over gradually to hydrocortisone after the colitis is under control. My husband is having problems with the weaning off process and spent 18 days in hospitals. The Medical Oncologist tried to come off the prednisone too fast and the colitis returned much worse. Watch out for dehydration, that's what landed him in the hospital in shock with crazy heart rhythms all over the place. My husband had the hypothyroidism and adrenal insufficiency appear about three or four months after starting Keytruda, and the infusions had to be temporarily halted until the right levels of levothyroxine and hydrocortisone were determined. The Keytruda wiped out all the cancer and a few other things because he was on it for two years. The ulcerative colitis did not get diagnosed early because he hid the diarrhea for months.

[dico in reply to GAdrummer]

Thank you for responding GAdrummer. Sorry to hear that your husband had to be hospitalized but good to know that he was able to resume the Keytruda. I expect that my husband is also going to have a hard time tapering off the prednisone as well. He had a hard time tapering off when he was only taking 10mg with Zytiga, so we are going to be very careful this time. Once again, so happy to hear that Keytruda can be restarted once the thyroid is under control.

[j-o-h-n]

Here I stand with my sign in my hand. Keytruda took care of my lung melanoma..... No side effects..........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/06/2022 7:07 PM DST

[NWLiving]

What a ride for the both of you