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Posted 3/10/2014 9:55 PM (GMT -5)
Hello,
I just started Xtandi about 2 weeks ago. I am 7 weeks post RRP and also receiving a monthly injection of Lupron. I am feeling stronger and better every day and I hate to say it, but this seems like a bit of a vacation compared to the initial surgery recovery and the chemo treatments that preceded it. It is interesting how our perspective of "normal" continues to change.

I think my legs are beginning to swell and I am starting to see my weight increase. Not sleeping well either. I do have an increased appetite also which is good but I am wondering if this is all due to Xtandi.

Any Xtandi veterans here that have had similar side effects? I have accepted that sleep is a luxury so I am mostly wondering if there is anything I can do about the water weight gain that I am experiencing in my legs. Walking and drinking water are all that I can think of as remedies.

It's getting warmer here in Minneapolis so walking outside will be more of an option in the coming weeks.

Thanks in advance,
Gunner
Posted 3/11/2014 9:32 AM (GMT -5)
Hello Gunner .....

   While my PCa background is quite different from yours, I was on Xtandi but just for two+ months last summer (2013).

   My first capsule treatment was Zytiga which did affect my appetite in a very bad way (loss of weight at 40+ pounds) in 5-months. Xtandi did not affect my appetite but again I was on it for a short timeframe.

   My ankles did have some swelling but not to the extent that the doctors were concerned.

   My Lupron injections are 6-month doses ... so that, in part, has much to do with my lack of energy. I can't say Xtandi contributed to that.

   I hope the Xtandi does work for you. It didn't for me. Both of the oral treatments were not positive experiences .... but both of the injected chemos have been. My signature below gives detail thru November 2013.

   I currently am on a maintenance program with Jevtana, after completing 6-treatments of that chemo with good results. Not listed below - but my PSA prior to starting Jevtana was at 83.09! And my PSA, just before starting my first maintenance treatment (7th overall of Jevtana) was down to 15.49!

   Again ..... hope the Xtandi works well for you. We're all so incredibly different on how we react to the various treatments.

Peace and wellness

Rob & Gizmo

 

Posted 3/11/2014 5:17 PM (GMT -5)
R&G
Thanks for your reply. The swelling is down today a little so maybe it's due to my diet or water intake. Maybe not, just trying to gain some control of the s/e's.
The Xtandi pills are big and the dose calls for 4 per day. I used to be able to swallow many meds at once but these are definitely to be consumed one at a time. Learned that the hard way.
30 weeks is a long tour on Taxotere. Glad to hear you're past that with good results. Hope the Jevtana continues to work for you as well!
Here's to continued decline of your PSA! Sending positive thoughts and energy your way.
Gun
Posted 3/14/2014 1:50 PM (GMT -5)
Sorry this didn't get to you sooner! My husband has been on Xtandi for 17 months now and everything seems to be going very well for him.
He is 13 years post Rp, having had radiation, Lupron from the start, Casodex, Ketoconazole, Taxatere, and a month on Zytiga. He has developed severe muscle and joint pain, some confusion, usually has a terrible stomach ache after taking the pills with his evening meal, and needs more sleep than before. Is it from the Xtandi? Not sure. The joint and muscle pain could have been masked by the Prednisone that he was on for so long. Doctor thinks it is just arthritis, but who knows. The confusion could be from the Taxotere, the need for more sleep could be that he will soon be 68. It is all a mystery to us! Other than that, he has a good appetite and continues to work in the yard several hours a day. He works out at a gym 3 times a week and looks great. His PSA is around .2, and has stayed pretty constant the entire time he has been on the Xtandi. He has also been a strong believer that his glass of pomegranate juice every day has been a big help! I am excited to see that they are being so aggressive with your treatment. It will be great to see how this type of treatment will differ from the type that my husband has had.
Was hoping to see more people answer your question, but hope this has helped.
Best of luck!
Posted 3/14/2014 9:44 PM (GMT -5)
Smo1,
Thanks for the bump.
It's great to hear of the consistent PSA results with Xtandi and the other treatments. Looks like you've had a long haul but 13 years post RP sounds good to me!
My treatment has been aggressive so far but results have been good. Looking forward to sharing a long history like your husband.
Take care,
Posted 3/15/2014 11:48 PM (GMT -5)
My husband has been on Xtandi for two months now. It's very difficult to know what side effects are from the Xtandi since his disease is very advanced. He does not have any swelling in his legs though. He does have a poor appetite and fatigue. He is currently on an Xofigo/Xtandi combination therapy so we attribute most of his SE's to disease progression. Not sure if Xtandi is working yet but since his pain has decreased we are attributing it to the Xofigo helping.

As you can see by his profile, he is at a very advanced stage.

Zimac
Posted 3/18/2014 5:52 PM (GMT -5)
Hi Gunner,
Mark was placed on Xtandi soon after it was FDA approved, Dec 2012. His PSA was almost 1000 after completing Provenge in October. This was his "last shot" with multiple sites of visceral (bladder, lung, lymph) metastases. By Feb,, his PSA dropped to 18. Yes eighteen! His scans in May showed remarkable improvement with some of the mets vanishing completely and all smaller with no new mets. Unfortunately, it did not seem to do much for the bone mets. His side effects were minimal, although he did lose considerable weight, and had poor appetite and swelling of his feet and ankles. He took it at night because it did make him tired. His PSA leveled off and then rose slowly for a few months. His September CT scans showed no new mets. By Christmas 2013, we could see and feel several of his lymph glands.
Everyone responds differently to each of these therapies. Is it timing, type of PC, prior treatments??? I'll let medical gurus talk to that. I'm grateful that the drug was on the market when he needed it and grateful for the extended life it gave him. Keep on fighting. There will be a cure.
Pat
Posted 3/18/2014 9:23 PM (GMT -5)
Pat,
Just saw that your husband passed away. I am so sorry for your loss. My heart goes out to you. May you find the strength, peace and courage to forge ahead.

And yes, there will be a cure someday.

Chris
Posted 3/19/2014 2:47 AM (GMT -5)
Hi Pat -

So sorry to hear your dear husband passed on March 10th, but as you say glad he was abe to take advantage of all the recently FDA approved drugs, Provenge, Xtandi, Zytiga, and Xofigo.

He and you and your extended family are in my prayers.

LupronJim
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