Swelling behind my knees, below my eyes, along the front of legs, breasts, neck. What is going on?

[kcareer]

I have been on this site now for some months. It is very uplifting to find a support group like this. My journey so far is this. I was diagnosed in December 2016. My PSA then was 116; Gleason Score of 9. My MO placed me immediately on Taxo chemo. I did 6 rounds of it. Then I started taking Lupron every 4 months. My PSA came down to 3.7. My lowest PSA was 0.05 in January of 1918. I asked for Zytiga and my PSA remained at 0.05 until the fatigue was too much. To relieve me of some fatigue, Zytiga was stopped and replaced with Xtandi in November 2019. This is where my PSA is still at. I am also on Xgeva every month. But my problem now is that I have swelling behind my knees, below my eyes, along the front of my legs, breast, and neck. Any advice from any one please.

[Tall_Allen]

How are your blood pressure, and your electrolytes?

[kcareer in reply to Tall_Allen]

Thank you Tall_Allen. My BP is under control. I am taking Hydrochlorothiazide (HCTZ) 25 mg every day. My magnesium, calcium, and phosphorus are within range.

[Tall_Allen in reply to kcareer]

I was wondering if you are taking insufficient prednisone with Zytiga. That would result in high BP, low potassium and edema.

[kcareer in reply to Tall_Allen]

Thank you Tall_Allen. I am no longer taking Zytiga and prednisone. I stopped taking Zytiga and prednisone since September 2019. Since then I have been taking Xtandi 160 mg. I had high BP even before I was diagnosed of cancer. I do not have problems with potassium.

[timotur]

I had swelling while on Lupron for 18 months, especially around the ankles when I started the day sitting at a desk. Also I had a puffy face from time-to-time. My BP during that time was elevated about 15%, so I'm thinking that had something to do with it. Also your lymph system is carrying more waste by products from metabolizing the by-products of ADT. I would try to drink more water and walk as much as you can to keep the lymph system working well, and mention it to your doctor next visit.

Here's a list of the SE's...

bing.com/search?q=lupron+si...

[landcrab in reply to timotur]

I have swollen calves, mentioned it to my GP and onco, both didn't seem to take it seriously. Only suggestion was use compression stockings which seemed to make it worse.

[Hidden in reply to landcrab]

Sitting is the new smoking.

[kcareer in reply to landcrab]

I also mentioned these swellings to my MO. He said it was not cancer related. He called it fat redistribution. He referred me to my GP.

[Hidden in reply to kcareer]

I asked my MO for shingles shot ,he says ask your GP, the GP says ask your mo . It happens .. “ not cancer related “? So what! you still want a fix . We must advocate for ourselves within this system .

[kcareer in reply to Hidden]

Thank you, Lulu700. We must be our own advocate.

[kcareer in reply to timotur]

Thank you, timotur. The swellings could also be from the Lupron. I also have metastasis on some of my lymph nodes. This could also be the problem like you suggested. I drink about 3 water bottles of 500 ml each day. Maybe I need to do better.

[Hidden]

Are you retaining fluids? I simple test. Press you finger against the swollen area. If it slowly filled in. The culprit is most likely fluid retention l. Tell you cardiologist.

Gourd Dancer

[kcareer in reply to Hidden]

I have done this test and it is not slowly filling in. My MO called it fat redistribution. He referred me to my GP.

[Hidden in reply to kcareer]

It is the basic test for edema. Good luck.

[kcareer in reply to Hidden]

Thank you so much.

[Hidden in reply to kcareer]

Just caution. BTW, my Cardiologist put me on Lasix and Potassium to drain off the fluids. I feel some much better now,

[kcareer in reply to Hidden]

I am taking Potassium Chloride 750 mg. Is that the same thing that you are taking? I will suggest the Lasix to my GP. Thank you very much.

[cesces]

Sounds like either (a) some kind of fluid retention edema issue, or

(b) some kind of auto immune issue.

You need to go see a general practitioner right away. There is no time for crowd sourced internet diagnosis.

[kcareer in reply to cesces]

Thank you. I will see my GP within 10 days.

[Shooter1]

Full dose Xtandi messed me up. May need to cut to lower dose to 2 or 3 pills.

[kcareer in reply to Shooter1]

Thank you Shooter1. I'll talk to my MO about cutting my Xtandi to 3 pills. May be this will help.

[silver5]

I've had a much simpler situation. Began taking Lupron a year ago to deal with rising PSA that indicated metastisis. Have not had any issues with swelling.

[Hidden]

Dear Sir , I’m sorry , that sounds alarming. Edima maybe? I’m no Dr, but you should see one very soon if it were me. I’ve yet to do chemo or zytiga .. Good luck finding a fix . You shouldn’t be swelling like that .Please let us know what you find is the culprit? Take care

[kcareer in reply to Hidden]

Thank you Lulu700. I will surely let the group know what the culprit is.

[Hidden in reply to kcareer]

Thank you Sir .. finding a solution for one can help many others here .

[j-o-h-n]

It's a wonder things aren't worse.... fighting Pca since 1918? All joking aside I would see your GP and Kardiologist as soon as possible. Take someone with you to act as the scribe.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/10/2021 5:23 PM EST

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

Thanks j-o-h-n. My mistake. I meant 2018. My wife always goes with me to see the MO, or GP.

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

You don't know by now? Blame all your mistakes on your wife... (biggest was marrying you 😀) Smart to take your wife when you see doctors... women listen we just blank out.......

Hope all turns out well with the docs....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/11/2021 8:26 PM EST

[Squirrel71]

Hi kcareer

I have been on Lupron and Apalutamide for almost a year and started to have significant pain followed by swelling in my right ankle last summer. The pain migrated to include my left foot and ankle. I added swelling to my left leg below my knee down to my foot as well as my right ankle and leg below the knee. It became so painful I could hardly walk but with time the right leg/ankle/foot has returned to normal and the left is much better so I can walk normally although the left foot hurts at the end of the day. I also developed a severely itchy and painful rash on my left leg a couple of months ago which spread to my lower back, my elbows, the right side of my abdomen and my right leg. Fortunately, this has also dissipated and all I have is a rather angry rash on my right calf and a much less severe one on my left leg below the knee. My guess is that these are less common side effects of Lupron and Apalutamide respectively. I owe the improvements to my daily exercising (including on a bike) as well as recently adding CBD oil and antihistamines to my daily intake. Apparently, many of these kinds of side effects go away on their own if given enough tome but they were hard to take for a while. PS. My blood pressure has been consistently normal.

[kcareer in reply to Squirrel71]

Thank you Squirrel71. I think I should increase the quality and quantity of my exercise regimen. I try to walk about 4000 steps a day. I need to increase this number.