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Edema/lymphedema after 7 months on Orovyx/Nubeqa?
Well, here I am again with a question for the group...last week after working all day I noticed that my left lower leg was swollen and a little discolored and the skin was tight. Upon removing my sock and boot I found a pretty good dent in my skin where the top of my sock and boot met my calf. Yikes!
After a blood clot in my arm last year that revealed a PSA of 66 and a serious case of prostate cancer I am hyper tuned to any changes in my body. So to Google AI I went....it said that ADT/ARPI probably would make both legs swell and that it was likely a lymph node blockage/drainage causing the edema in just one leg. I have had no surgery or radiation which leaves the cancer that had already spread to multiple lymph nodes (last year) as the possible culprit. Maybe. So I cut the elastic bands off the top of my socks and do not lace my boots as tight. It has made a difference in the "dent" but my left lower leg is still slightly swollen after being on my feet all day. This morning after stepping out of the shower it looked like the lymph nodes in both armpits were swollen. More reading: low salt diet, elevate feet, wear compression socks, lymph massage. Appt with the MO Dr Sept 15 for new numbers and I will talk to him about this.
Hoping that after 7 months on ADT I am not becoming castrate resistant and the cancer has further blocked/damaged lymph nodes. Not too worried yet but it is always something isnt it? Just when you start to relax and get comfortable that black spider spins another web...lol. Any opinions or suggestions? Thanks for reading my post, I will be reading yours!
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ADT drugs cannot damage your lymph nodes. The swelling you are noticing occurs with some people that are on ADT it’s called edema. I have a minor bit of it my feet feel tight around my socks, some of the time. I’ve been on a ADT for nine years, however.
Up to 25% of people on ADT have this problem with edema.
There are some drugs that can reduce it, you need to speak to your doctor about that.
Edema/Lymphedema- My story: I had 45 IMRT sessions last fall and ADT Rx ( orgovyx and nubeqa) started JUly 11, 2025. Was sailing along ok til JUne of 2026 when I hit my ankle on some furniture and noticed some swelling and it didn resolve quickly like in the past. In fact it became worse but still only in rt leg and manageable I guess. Then late in July, I had Prolia injection and a few weeks after I noticed left leg swelling as well. Now I have edema ( lymphedema?) in both legs/feet. And some wt gain ( now around 250 lbs where normal is 215 or so) SO researched side effects of ADT and Prolia and guess what ? both cause edema and after my 45 IMRT last fall, I think my pelvic lymph nodes are unable to flush the lymph fluids from legs efficiently and it has affected my life in a negative way. I can still bike and walk but it is uncomfortable.
I am hoping it resolves gradually over time but got insurance to buy the compression leggings that massage legs-I was told it does help edema a great deal. ( still waiting on delivery)
I recently wrote here on this site, that I was disappointed my oncology team did not tell me about prolia side effects ( edema and fatigue among other things)..
Anyone else gone thru this BS !?
@jeffmarc Yes, I realize that ADT does not damage lymph nodes but cancer sure can....and with just the left leg affected it may be that my swelling is due to lymph edema, but who knows for sure.....Ill be elevating both legs several times a day, not wear tight socks, quit eating salty chips, drink more water and will def talk with both the MO and PCP about it in a few weeks. Not sure I will be asking for more drugs, I already take a handful. Hey! Thanks for your reply Jeff, always a pleasure to read you comments, not just to me, but to so many others here on the forum.
And I read you on the HealthUnlocked forum, I really like following the many conversations there also, I can use all the help I can get!
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3 Reactions@xahnegrey40 Thank you for the reply. Sorry you have to go thru this also. I did read where radiation can damage lymph nodes enough that they do not work properly. Adding the ADT on top probably does not help. I have a pair of air operated compression leggings and have been using them sporadically, I guess Ill try to get on a schedule....if it isnt one thing.... its another.
As for the oncology dept where I landed.... I have to research everything, thank goodness for this computer. I hope your legs improve and things get better for you, as much as they can, given the situation. I read your posts all the time, thanks for reading mine.
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