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Posted 1/30/2016 11:56 PM (GMT 0)
Gary has developed edema in his right leg and foot (his foot is extremely swollen) and the fleshy skin around his penis, too. It has been getting progressively worse over past few days, but he decided to clue me in today that this was going on (I do wish he wouldn't wait until Sat to freak me out when the medonc office is closed). A quick web search shoes that peripheral edema is a SE of xtandi, but right side only could be a lymph node blockage from the PCa.
Of course, I am most concerned about kidney issues. Anyone out there have had this happen on Xtandi that can talk me off this ledge until the Dr opens on Monday. I'm pretty sure he won't let me take him to the ER, and I hope he doesn't really need to be there. Help?
confused
Posted 1/31/2016 5:31 AM (GMT 0)
BTW, if you read this thread TA, I wonder if xtandi is similar to zytiga in affecting the adrenal's secretion resulting in the edema? I know you don't take prednisone with Xtandi, so I guess that's not the case?
Beth confused
Posted 1/31/2016 6:40 AM (GMT 0)
Hi Beth,

It may be lymphedema, as you surmise. Does a pressure stocking help? You probably know to keep it elevated higher than the heart. But yes, kidney is a possibility too, I think. How's his BP?

Xtandi doesn't affect the adrenals. It blocks the androgen receptors of cancer cells and prevents their translocation into the cell nucleus, which is a major cause of castrate resistance. I think Xtandi and Zytiga would work very well as a team because they have such different modes of action.

- Allen
Posted 1/31/2016 3:53 PM (GMT 0)
Hi Beth,

I have nothing to offer you with any advice or knowledge with your husbands edema. But I just wanted to say I hope today is a better day for you both. I really admire the strength that you and Gary must have to fight the good fight with this dreaded disease.

I realize how tough everything has been for my girlfriend (of 16 years), her being the guiding light to get me to do the necessary things to battle this disease. The quiet (and a lot of times not so quiet; lol) strength she has shown throughout.

I just wanted to say I wish you both well and wish you continued strength and courage. And of course I hope the edema problem gets solved quickly.

All the best, Jim
Posted 2/1/2016 2:53 AM (GMT 0)
Allen,
His BP is good, and he seems to be urinating fine. I think it must be a lymph, since its only one side, but we'll see what doc says tomorrow. He has some diarrhea and nausea today too, and no appetite, but that could be totally unrelated. Thanks, as always for reading and replying. It makes me feel so much better that you are there when I'm feeling overwhelmed.
@ Jim...hit that zero club, okay? smilewinkgrin
Posted 2/1/2016 3:23 AM (GMT 0)
I hope he is doing better! I had edema for several months in left foot/lower leg only, but of course I was surgery (RP with lymph node excision) so I can not relate to your exact situation. I was pleased to see that the edema finally went away and has been 100% gone for many months so far. But mine was surgery related, no drugs involved, so I have no clue about Yall's situation. But I hope it get's better like mine did! ( I actually was kind of surprised that- after a few months of an on and off VERY swollen foot- it went away completely. I thought it might be a permanent new buddy)
Posted 2/1/2016 4:29 AM (GMT 0)
Billy Bob,
It's interesting to me that your surgery included lymph involvement. Was the edema same side as lymph node(s) involved? I am thinking perhaps Gary as blocked lymph from PCa.
Thank you for your reply.
Beth
Posted 2/1/2016 4:41 AM (GMT 0)

celebrate life said...
Billy Bob,
It's interesting to me that your surgery included lymph involvement. Was the edema same side as lymph node(s) involved? I am thinking perhaps Gary as blocked lymph from PCa.
Thank you for your reply.
Beth

Lymph nodes were removed as a matter of routine, a just in case scenario, not because of any known involvement, and in fact they showed no involvement, they were clean. However, the edema was on the left only, and my tumor was only palpable on the left side. So maybe they did more work on that side? I doubt that helps much, but that is all I know.
Posted 2/1/2016 4:46 AM (GMT 0)
Everything helps when I'm waiting for medonc office to open and I can't do anything to help except elevate and try not to fret. Thanks :-)

@T.A. BTW, Gary has some zytiga from last go around. I am going to talk to Dr about adding and hope he agrees.
Posted 2/5/2016 7:19 AM (GMT 0)
Quick update: Gary had an ultrasound to look for a blood clot. That was one thing I hadn't thoughtf of during my weekend freak out, and good thing! No blood clot, thankfully.
Medonc said probably a lymph node issue and told Gary he could come in prior to his appt. next week if he wanted. Fortunately the edema has somewhat subsided. His foot no longer looks like a balloon yeah
Hoping for another big drop in PSA on Thursday, then we are off to Hawaii for a few days. We had to cancel last year at this time because Gary was feeling so crummy. Amazing, really, that he feels better than he did a year ago, and that was when it looked like the end of his treatment options. I feel blessed.
Beth
Posted 2/5/2016 1:56 PM (GMT 0)
Good news on the edema going down!!! continued thought and prayers for another great drop in the PSA!! So glad to hear that Gary is up to going to Hawaii!!! i'm sure you guys will have a great time and be therapeutic for him! He truly is an inspiration for us traveling the similar path...and I for one appreciate him blazing the trail!
Jordan
Posted 2/5/2016 5:07 PM (GMT 0)
Whew! Sometimes we catch a break! Enjoy the trip!
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