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Xtandi side effects, results, etc

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Posted 3/17/2013 10:55 PM (GMT 0)
Hi Passages,
I have updated my profile so you get an overview of his health history. Even though my dad was diagnosed last year, it seems that we have been through it all. What worries me is that any one treatment works only for 3-6 months. At this rate we will be running out of options....hence I ask about the survival time......My dad is asymptomatic and feels quite well.....i feel sad when i look at him.....I wish he will be able to fight it and will be with us for a long long time....Is it too much to ask for ?
Posted 3/17/2013 11:41 PM (GMT 0)
Wow,chinki, his PSA did go fast. He's about our age and, as far as treatments recently, a year or so behind us. Did he not have PSA checked earlier in life? Is it all of a sudden? I wish I could give a good answer. Hope others will chime in, but you might want to do a new post with your question, I really encourage that. You should get more help with your questions. Maybe forum person will help with that. That is something that has come up among those of us at this stage - did we move through all the treatments too fast?, because you do run out of possibilities. I know this is repetitive, but there does not seem to be one good answer. My husband was asymtomatic, considering the metastasis, until the Xtandi. Take care.
Posted 3/18/2013 12:01 AM (GMT 0)
I agree with Passages. Our path is similar to hers and her husbands. And in 2012 my husband underwent three different treatments. We learned that such changes should not be based upon PSA only, that the scans are important for base line and then through the time of the treatment.
My husband's PSA is over 100 right now (we aren't sure of the number but will know for sure next month - our choice)
He is back on zytiga and we are determined to give it a good run. There's so much good news about zytiga, we hope he is one of the lucky ones.
But I also want to say take a deep breath. This ride has a lot of ups and downs, some of them very steep.
Take care - you are not alone in this battle.
Posted 3/18/2013 12:16 AM (GMT 0)
Hey, good to hear from you nhwife. We go Tuesday. This fever stuff is so confusing and puts him down. How's the pain going? Ours mentioned doing Zytiga again, but wanted to give Xtandi a chance and not jump treatments. He seemed to thing we jumped Taxotere to soon, but it was nine treatments and think enough for his body?? But than look at a 5.2 PSA and wonder now at 160. Sort of dreading Tuesday appointment, because need to push the question what next and why all the fevers - over two months of up and down. When it goes up, usually around 102+, he is down for the count. Hope yours is feeling and doing better.
Posted 3/18/2013 5:27 AM (GMT 0)
Passages...the fever...is puzzling....sounds like something viral.....blood work up shows nothing, chest x-ray, ear infection, did they do a urinalysis? If not, I would ask for some of these tests......just to try to locate why fever....that alone will "pull" you down...

simo1...keep us posted on your next doctor appointment....

So as far as I can tell, the following folks are on Xtandi: Passages, liefde, smo1..who else?

Everyone else, either Zitga or taxotere

Jitters99, still on Xtandi?

I read so many posts..it's hard to keep up with who is on what...I'm going to try to graph the outcomes....PSA results, amount of time on Ztandi, etc. Will try to do it also with Zitga. Just need to know who is on what....

Good thoughts and when I look up to the heavens, I say a prayer for all of us down here fighting this dreaded disease, cancer, in all of it's "rotten forms!
Posted 3/18/2013 4:22 PM (GMT 0)
Thank you all for all your support and encouraging words. This disease sure has its highs and lows but together we need to beat this crap. Will talk to the doc and update you guys as to what the next step should be in my dad's case.
See you all soon.
Chinki
Posted 3/18/2013 6:38 PM (GMT 0)
Thanks tednsal, I will be pushing the fever thing more with the Dr. tomorrow. I was trying to research for what I should ask for. You have good ideas. One place mentioned metastasis could cause it in certain cancer - prostate not listed. That has not been a supposition given by any Dr. yet. He's been to his PCP, ER, and oncologist. Haven't done any questioning since a month ago. He's being inbred drives him nuts. Anyone think of some other test, please help.
Posted 3/18/2013 7:23 PM (GMT 0)
I don't have anything smart and helpful to offer (which makes you wonder why I'm still typing...), but I just now read this posting for the first time, and am so sad to hear how much pain you're all going through.  So I atl east wanted to tell you I'm sorry to read it, and to let you know there are others out here pulling for you. 

Good luck, good wishes, extra prayers coming your way

 

Posted 3/18/2013 8:37 PM (GMT 0)
Thanks infohound. We all appreciate any good thoughts.
Posted 3/19/2013 12:43 AM (GMT 0)
So sorry to hear some are having such problems on this thread. I keep you in my prayers!
My husband has his doctor's appointment with his oncologist this Friday. He seems to be doing well. Is continuing to have the pain in his upper back, its been about 5 weeks now and doesn't seem to be getting any better. He is requiring more sleep, but other than that, he is doing very well. He has been on Xtandi for 3 1/2 months. Haven't heard what his PSA was when he had it done in February. The doctor only lets us know if it has risen and with the January test at .21, it doesn't sound like anything compared to some of the numbers I read on here. Does anyone know why the numbers vary so much? Will log in with new info after Friday!
Till then, everyone stay strong!
Posted 3/19/2013 12:55 PM (GMT 0)
Smo1, be interested to hear how your visit goes Friday and take all the prayers we can get.
Will see if Dr even works towards figuring out what's causing fevers.
Waiting PSA for us today is scary, since it doubled and when on Taxotere 5.2 was failing treatment, now 160. Scary.
Thoughts and prayers for all.
Posted 3/19/2013 2:54 PM (GMT 0)
Passages, today you'll find out PSA? My thoughts with you! It will go down! It has to.
My husband is having some leg pain today - not fun. Hard to imagine anything working with this continuing pain....
Posted 3/19/2013 2:58 PM (GMT 0)
NHwife, thanks. Feeling near tears. He is so puny. No fever today. We always go out to eat at a special place. He just ordered oatmeal and not sure he'll even eat that. I am not even sure what to ask differently: fever, continue on Xtandi or not, what next ...... Really hitting me right now.
Posted 3/19/2013 3:17 PM (GMT 0)
Passages and Nhwife....

My heart goes out to both of you. I am thinking the very best possible thoughts that I can for you. Stay strong....
Posted 3/19/2013 3:28 PM (GMT 0)
Thanks littlenm and you too. I just have a bad sense or maybe just afraid no answers or possibilities. He dreads the idea of Taxotere again, yet he's he really feels worse than that. Blessed so far that pain is manageable. Hard to get up and down. Oh well, will get back to you wonderful people later.
Posted 3/19/2013 5:08 PM (GMT 0)
Well, PSA up only 8 to 168 - guess that's relative. Needs to get blood, a first for him. Also going to do a urinalysis. Said fever could be a tumor fever or from the medicine - first time that thought has been proposed, although I thought I had kind of asked about that in the past and I finally found the tumor fever as a possibility when I did more research this week. Now waiting and waiting......for Zometa, etc. thinking and hoping getting blood will help. I do think Dr. was shocked at how pale and puny he looked.thanks again for thoughts and prayers.
Posted 3/19/2013 6:08 PM (GMT 0)
Hi Passages,
168 is still not that bad.....did they say he will be still on Xtandi or will they change his course of treatment? Hugs and prayers for you.
Best regards
Chinki
Posted 3/19/2013 6:10 PM (GMT 0)
Thoughts and prayers for you. Honestly, I would be happy with only an increase of 8! I fear my husband's results next month - we would be happy with stability!
Hope all the tests and blood helps.Hope, just plain hope for you both!
Posted 3/19/2013 6:49 PM (GMT 0)
The only thing that sucks about HW is the inability to actually touch. I feel like if we could be there for each other physically too it would be great. A comforting touch, a hug, holding hands. all would be welcome.
Posted 3/19/2013 6:59 PM (GMT 0)
Passages
Are they talking doing any new scans to see if there is something new going on? You are in my thoughts! It is so hard to watch when they have been so strong and then to be so weak. It just isn't suppose to be like that! Hope they find some answers for both of you soon. Stay strong and get some rest while he is resting.
Thanks for keeping us posted!
Posted 3/19/2013 9:02 PM (GMT 0)
Yes, hugs would be good, and you guys get it. Dr. said scans at this point are only going to show what we know; unless he starts having lots of pain. Makes sense. I did ask him about going to the brain, but since no headaches or symptoms, he's not worried about that right now. Going up 8 is certainly not like doubling or going up 80, so I'm ok with it - mostly. It's just he's been a low PSA guy. I am hoping that getting blood will help with the fatigue. Again, I think Dr. was so shocked at how he looked. He also lost 26lbs this last two months, which would be nice after years of Lupron and now the steroids, but..... Dr. wants him to take the Megace, even though he is eating all meals; just not as much. When he gets really fatigued or has a fever, it's harder for him to eat. Do wish we all could get off this journey. Thanks for thoughts and prayers and sending them back at you.
Posted 3/20/2013 3:13 AM (GMT 0)

I have been reading the posts regarding Xtandi.

I have been treated with various chemotherapies for the last five years. The last chemo was Jevtana. My PSA (which is taken once a month) is currently 2,036. It has been around the two thousand mark for the last few months (give or take a few hundred points) .... I have advanced prostate cancer, metastasized ... mets to bones, etc ... I have J stent in place to help with bladder issue. Incontenance is an issue, and neuropathy from the chemo is an issue.

The problem I am having so far is getting my insurance to approve Xtandi. I have HIP insurance, which is a regional New York insurance. I understand in some cases there is a very high co-payment with this drug. My insurance has been paying for all my other treatments to date ... which have been for many years. Twelve years of treatment so far.

I have heard that one of the main side effects of Xtandi is fatigue. I have been treated with Lupron for twelve years, and will continue with Lupron, and other things. I understand the Xtandi blocks the rest of the testosterone receptors, which along with Lupron will create the fatigue. I am already anemic from the cancer, and many years of chemo .... my question is about insurance approval of Xtandi, and side effects of it .....    Bill

Posted 3/20/2013 5:35 AM (GMT 0)
Tednsal. Xtandi worked for 10 weeks for my husband, then PSA went over 600. Stopped. Now in clinical trial 233. Had one treatment in Feb. it has helped with his bone mets pain extremely well.
Next treatment is in 2 days, will post afterwards and see how he feels then.
He does have severe fatigue and muscle weakness, both were high before treatment though. Praying his PSA is lower and circulating tumor cell count is down....
The scans taken before starting Radium233 were substantially worse than 3 months before, hence his severe pain before treatment.
Posted 3/20/2013 9:23 AM (GMT 0)
For my husband, fatigue was a definite SE of xtandi. It has continued with the zytiga treatment. His PSA went up too on the xtandi. Currently on zytiga, for the second time.
Posted 3/21/2013 2:55 AM (GMT 0)
Bump for Missyj, but nhwife......actually all of you; so tired of seeing them tired and hearing about the pain and other se. I think we all had to have hope in these newer treatments, but certainly feels misplaced. Have to keep hoping though.
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