I know this subject has come up before, but I can't find answers to my questions in any prior threads.
Short background: I have Stage 4 CSPC. Met on upper spine. No diagnosed lymph node involvement. Leuprolide and abiraterone + prednisone for 2 years with most all the usual ADT SEs and PSA < 0.1 so far.
A couple of months ago, I noticed significant but not severe swelling of my R calf and minor swelling of L calf. I noted that leuprolide, abiraterone, prednisone all list swelling as a potential SE. So I messaged my oncology care team. Nurse replied "We do not think this is likely related to your cancer treatments... contact your primary care doctor."
So my PCP ran blood tests and ordered ultrasound, which found "No evidence of deep venous thrombosis". That's where things stand right now. Here are my questions. Thanks in advance for answers or even educated guesses. Also please share any related experiences.
1. Is my edema a likely result of my cancer? Of my cancer medications?
2. If caused by medications, which one?
3. Is it likely to be lymphedema?
4. Is this no big deal, just another ADT SE, live with it?
5. What should I do next?
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Gearhead
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It took well over a year for me to find out that my leg edema was due to the removal of 27 lymph nodes when my prostate was robotically removed. It was a vascular doctor who gave me the diagnosis. I went on physical therapy with a therapist specially trained to treat lymphedema.
I had almost the same issue. Left leg, ultrasound negative for clots. Lisinopril changed to Lisinopril plus Hydrochlorothiazide. (blood pressure/water pill). Swelling went away, but who knows if blood pressure med had any thing to do with it. So, no big deal for me.
Prednisone, interesting: Was on 10 mg/d for ~2 yr. Then I pointed out to my oncology team that Zytiga recommended dosage is 10 mg/d if CRPC and 5mg/d if CSPC, and I'm supposedly CSPC. So reduced to 5 mg/d over about a week starting 2/5/21.
BP: Fluctuates a lot. Average ~138/72. Treated with benazepril 10 mg/d + amlodipine 2.5 mg/d for 15 years.
Potassium: 4.1 mmol/L on 3/22/21, and 3.3 mmol/L on 2/1/21 (different provider and purpose).
I've been fighting this swelling for over 20 years due to heart medications. I minimized the dosage all possible.Summer weather seems to exacerbate. PCa drugs made worse.
I elevate legs when possible and wear those stylish compression socks when it gets bad. They do help a lot.
Been managing PCA for almost 26 years with many modifications of ADT. Last long modality was finesteride 5mg and flutamide 250mg 2x. PSA bounced around 1.5 to 4.5 last ten years. Started rising last 18 months. My Uro wanted me to go on Lupron and Zytega. Had done Lupron for several years 20 years ago. Had some ankle edema then.
Took 90 Lupron shot almost 8 weeks ago. Held off on Zytega to see reaction to the Lupron.
As I felt my gas tank drain for 3 weeks started with swelling in legs in 4th week. By 5th week so bad I started using a walker because of very limited mobility.
Uro said we will discontinue Lupron. He put me on Furosemide 20 mg 1x for 10 days. Then increased to 2x. Added potassium chloride. Even threw in 10 days of casodex.
I've been one miserable guy. Shed many tears. Went from working out with weights 3x a week to hobbling around on a walker. Ruled out DVT with ultrasound. Slowly draining the fluid. Raising legs when sleeping and sitting. Will soon be doing massage used with lymphodemia.
One day at a time. Still haven't ruled out heart issues (had none before).
Go to your cardiologist. Mine corrected the problem with 40 mg of Lasix with 10 meq tabs of potassium chloride. The edema will go to your lungs and heart sac. Simple test - take finger and press down on the skin, if a dimple is left, you are carrying fluids.
Here is what I can tell you: I experienced lymphedema in conjunction with the identification of a lesion on my left pelvic lymph node. The lesion was 2.5 cm according to an oncologist at Moffitt in 2017. They had done an MRI. I was seeing a vascular doc who had me on Eliquis and I was using a compression stocking. I am also able to elevate the end of my bed mattress and I can sleep with my leg elevated. These methods led to a decrease in my edema. The Eliquis has been stopped for more than a year because it eliminated a clot I had in my left leg. A very expensive medicine. I still have some residual swelling which I wouldn’t mind eliminating. I will try the selenium treatment. Thanks for your response.
I have been taking Lupron and Erleada for almost a year and have experienced pain and swelling that started last July in my right foot then my right leg below the knee. This eventually migrated to my left foot and leg below the knee and became so bad I could only walk with pain in my ankles. I continued to exercise and bike and eventually added two caps of CBD oil daily (0.3gm each) to reduce the pain. Don’t know what did it but the pain is gone as well most of the swelling. Was tested for DVT and heart issues but all clear. Must have been an ADT side effect.
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