Starting Keytuda on Tuesday, just shy of a year after 1st round of chemo. My profile has the details. I have MSI-high, high TMB, MMR mutations; only thing is PD-L1 is 1%, but very hopeful.
Can any comment on side effects they had & when they showed up. How were they handled. I'm expecting fatigue, loss of appetite & diarrhea, maybe rash. Anything else? TIA.
My husband, Ed, had one Keytruda infusion a little over a year ago. He felt fine for the first couple of days then developed a low grade fever on day three. He bounced back from the fever and got a little stronger at first. By the third week he was feeling very poorly however: very weak, no appetite, irregular heartbeat, tremors and weak voice, He resorted to using a walker and cane to get around. The good news is that his cancer became undectable after just one infusion. The cancer remains undetectable to this day! Turns out that the side effects were caused by damage to his thyroid and adrenal glands. The adrenal glands recovered after several months but he will most likely require thyroid medication for the rest of his life. Except for the fatigue and thyroid issues, all of the other Keytruda side effects have disappeared. If/when the cancer becomes detectable again, the doctor said that she would premedicate him (probably prednisone) and start him back on Keytruda. We are all very happy with the results so far. I hope that you have good results as well. I will be cheering for you. Good luck!
That's amazing after 1 infusion. Was he stage 4?
Yes. He is stage 4. The cancer was in his bones and lymph nodes. I'm sure it is still there, but has regressed so much as to be undetectable at this time. Not sure how long this will last, but it has been over a year. There is another person on this forum who has been undectable for four years after only two Keytruda infusions. I hope it works this well for you.
My brother was stage 4 cancer of the ureter. It had spread to the bladder and other areas. He has done Keytruda. His son is a PA at a cancer hospital in Delaware and called him a "super responder." I don't know how many infusions he has done. He did some was off for quite a while and then did a couple more infusions. Everything thing seems to be in a long term remission. He had quite a few issues with his digestion and could only eat a very limited diet. I think that was his worst side effect. After stopping Keytruda the side effects have resolved. His family is extremely happy with the results as are all his doctors.
They stopped with me after 4 / 6 week sessions due to severe colitis and I'll be on thyroid meds forever, but today I am cancer free and it was the Keytruda that did the job.
I was going thru RT at same time and was quite miserable when treatments started. But we made it thru and done.
Hope it works on you too Brother!
During a 2 year trial of Keytruda, my husband had an adrenal/thyroid crisis at six months from starting Keytruda. Six months after completing the trial ulcerative colitis (autoimmune origin) became a major problem. The tapering off of the prednisone used to stop the bleeding was done too quickly, sending him into septic shock and the hospital for 18 days. Now a year later, he is back on the hydrocortisone and levothyroxine plus a slew of other prescriptions to control the colitis. PSA had gone undetectable within 3 months of starting Keytruda and stayed there until last week when it came in at 0.2. Surprise! He thought he was cured and had started eating sweets again. Medical oncologist has said nothing about the new development.
Sorry to hear of the difficulties involved, but the results are great. I wonder if stopping the med soon after his PSA went to zero might have reduced the side effects yet been as effective.
Hopefully the 0.2 is just a blip. Thanks
He still has his prostate gland, so there is always a chance of a new mutation. We will wait to see if the PSA continues to rise. If it does, we will wait for it to get high enough to be found on a scan. Then we will wait for a biopsy to help determine treatment. All that waiting = lots of worrying, so for right now the topic is a hot potato that neither of us wants to touch. Something else may take him first, like another stroke. So he continues to write novels and I continue to recover from the all-nighters battling Kindle to get the latest published. Uploads take so long at the end of ATT's landline, but fastest times occur between 3 am and 6 am on Mondays. This week my distraction is preparing for two holiday gigs in neighboring towns, tonight was the dress rehearsal.
Apple to Oranges.... I had 13 treatment for my Melanoma Metastasis to my lung, and by jove it worked.....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 06/27/2023 6:41 PM DST
Three weeks since 1st Keytruda infusion + my PSA has risen from 2.74 to 4.99! Has anyone had an early surge when starting? Hopefully, just a surge like sometimes happens with chemo.
Chemo experience? I'm starting this week...
Keytruda + docetaxel
Keytruda failing, feeling desperate, advice needed quickly 
Olaparib-Keytruda Trial
