Side effects of Zytiga and prednisolone

[Arcticfox44]

I have just updated my profile. I am concerned about persistent swelling of feet and ankles, back stiffness with some pain, and weight loss and poor appetite after discontinuing Zytiga and prednisolone about three months ago. My concern is that these may be signs of PC spread, not simply temporary side effects of the Zytiga and prednisolone.

[Tall_Allen]

3 months post-prednisolone, the edema is more likely another cause. Reading your profile, I would guess the swelling of your feet and ankles is from lymphedema caused by your lymphadenectomies and your SBRT to specific lymph nodes.

[Arcticfox44 in reply to Tall_Allen]

Thanks. Apologies for delayed response. That makes sense.

[HopingForTheBest1]

When I had my prostate robotically removed, back in November 2018, 27 lymph nodes were also taken out. Two were found to be positive. I later experienced ongoing swelling in my left leg, ankle and foot. Diagnosed with Lymphedema, which I didn't recall had been disclosed as a side effect of the surgery.

Had specialized physical therapy for several months, and was provided with a pump (Tactile Medical) that I use at home 60 minutes daily. I also regularly wear compression socks. All of this has controlled my swelling.

I expect that your possible PC spread would be confirmed with an updated scan. Have you had one recently. and have you discussed your situation with your Oncologist? What is your latest PSA?

By posting your story of having experienced long term survival of 19+ years to date, you have given hope to many of us fellow warriors who are earlier on in our journeys.

[Arcticfox44 in reply to HopingForTheBest1]

Apologies for delay in responding. After I discontinued Zytiga and prednisolone in early March 2021, my PSA not surprisingly rose somewhat to about 16, and then again after completion of the stereotactic radiotherapy of two pelvic lymph nodes, which ended on May 12 this year, it rose yet again, to 20. When I reported this to my care team at the Mayo Clinic in Rochester (Dr. Eugene Kwon), they said the latest rise was probably "flare" from the radiation. Next scheduled blood test is third week of August, so we'll probably learn more then. The Mayo also recommends elevating feet and using support stockings, which I have.

[Arcticfox44 in reply to HopingForTheBest1]

I should add that I have appointments at the Mayo in early September when they'll do another PET scan and an MRI of the abdomen as well as the blood tests. I think it is worth getting this second opinion following my radiation and previous Zytiga treatment here in Cyprus. I have not been at the Mayo since August 2019, partly due to Covid of course.