Keytruda Experience - 1st Infusion on 5/24/22

[dico]

Thought I would post this for those who may be interested in Keytruda. After failing Zytiga and being unable to tolerate the side effects of Xtandi, my husband Ed was authorized for Keytruda (he has the MSI High biomarker). Here is how the first infusion went.

Day 1: The day of the infusion went well. The process took 1.5 hours from start to finish. As this was his first time they started the infusion with a slow drip as a precaution. We were told that the next infusion would be faster, probably 1 hour or less. Ed tolerated the procedure well and had no problems during or after the infusion.

Day 2: Ed felt great in the morning and we were able to go for a 1.5 mile walk. Later in the day he had some nausea and a slight fever. He was afraid he might be getting diarrhea so he took 2 immodium tablets. This may have been a mistake as he had no more diarrhea and actually ended up being constipated for a couple of days.

Day 3: Feeling a little worse. Very achy and tired with temperataures ranging from 101 to 102. No appetite. Stayed in bed all day.

Day 4: I think he has turned the corner and is starting to feel better. We were able to go for a short walk. No temperature today and appetite slowly improving.

Day 5 - 11: Feeling a little better each day. We went for a longer walk today (2 miles), which we haven’t been able to do since the Xtandi disaster. Pre Zytiga and Xtandi we were doing 4-5 mile walks each day.

Ed is still very weak and continues to lose weight, but I am hopeful that Keytruda is going to help. Note: Ed’s weakness has nothing to do with Keytruda. The weakness started when he was bedridden for 8 weeks with Xtandi side effects. You know what they say,,,”use it or lose it”. This is definitely true when it comes to muscle.

Best wishes to everyone fighting this horrible disease and hoping that all of your treatments improve both quality and quantity of life.

[Concerned-wife]

Thank you for taking the time to share.

[middlejoel]

Dico, thanks for the info, 4-5 miles is imprssive.

How long was Ed on Xtandi, had he failed Zytiga prior to? Was considering Xtandi for a posssible bext treatment but now... not sure. What were the symptons and why did it take so long?

[dico in reply to middlejoel]

Hello middlejoel. Ed had a good run with Zytiga. It kept his PSA undetectable for 2 years with minimal side effects (muscle loss, fatigue and hot flashes only). When his PSA started trending up he was offered chemotherapy but he was not ready for that. His MO ordered genetic testing and we found that he had both the MSI High and BRCA2 markers. So now we had to decide between Keytruda (for MSI-High), Olaparib (for BRCA2), chemo or maybe try a different antiandrogen. As Ed didn’t want chemo and I was concerned about the side effects of both Keytruda and Olaparib we decided to try Xtandi. While Xtandi works great for some people, Ed’s body revolted almost immediately. The first symptom was extreme pain in the hip/buttock area. Then, as suddenly as the pain started, two weeks later it stopped. We have no explanation. Even after the pain stopped, the appetite never came back. He continued to feel nauseated. Getting out of bed and moving in any way was exhausting. He kept taking it for 5 weeks, hoping that the side effects would decrease. At week five we found out that his PSA had actually gone up so his doctor told him to stop taking the Xtandi. Xtandi has a long half life so he didn’t start feeling much better until he had been off it for about four weeks. In retrospect I wish he had stopped the Xtandi much sooner, but we were both so hopeful that the side effects would become torerable and that he could get more time before starting something that could potentially have more side effects.

I don’t want to scare anyone off of Xtandi because I can see on this forum that it works great for many; just not for Ed and a handful of others on this forum. My non-professional advice would be to listen to your body when it comes to Xtandi. If the side effects are intolerable or last more than a week, talk to the doctor immediately about decreasing the dose. If you let your body get to the point where you cannot exercise, it is very difficult to build your body back up when your T is so low. That is where Ed is right now.

[Shooter1 in reply to dico]

Full dose Xtandi laid me out also. Still on 1/2 dose, but it is definitely failing. First 2 bone mets zapped and good for 7 mo.. then another spike in PSA and new met zapped, PSA stabilized but didn't drop. On to Xofigo PSA continues to rise. 3rd Xofigo and PSA up a lot less, only 16%, but scans show new mets in #8,9,11 ribs and left sacro/iliac and #10 rib with "sSitz" bone stable but not shrinking. Seeing my MO tomorrow. May have to go back to some kind of chemo but with neuropathy from first go around I am leery.Best of luck to Ed with new treatments. Chemo may have to be his next step..

[dico in reply to Shooter1]

Sorry to hear Xtandi is no longer working for you. Hopefully you will find a new treatment that works. I will be cheering for you.

[j-o-h-n]

Again, again and again............. Had 13 treatments for my Lung Melanoma using Keytruda. It worked and I never had a side effect from the meds...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/06/2022 6:20 PM DST

[Shooter1 in reply to j-o-h-n]

Very lucky man!! Life Is Good, especially when treatments work....

[j-o-h-n in reply to Shooter1]

Yes sir....... Surgeon was about to remove part of my lung.....but a young woman on the staff said maybe Keytruda would do the job (no cutting involved). I wish that woman would have told me about marrying my first wife......(beggars can be greedy)....Well if you should know of anyone with Lung Ca (hopefully not) mention Keytruda.... Regards and up and down range......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/07/2022 5:49 PM DST