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MDV3100 - an update

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Posted 9/25/2012 11:23 PM (GMT 0)
There isn't too much to report on the MDV3100. We have two weeks until the second appointment.
But my husband has had a rough patch with coccyx located pain hitting him hard. We went to the doctor's today and got some higher end painkiller plus a sleep aid.
And a MRI scheduled for tomorrow. I can't think this pain is cancer related. We don't know so why think that.
Not sure what it can be. He has had this before but this is the worst it's ever hit him.
Hoping for a good night's sleep for him.
And thinking of anyone in pain or distress - this disease is no fun.
Sleep tight, everyone.
Posted 9/25/2012 11:46 PM (GMT 0)
Nhwife

I did a bit of google and came up with;
tailbone pain caused by cancer only occurs in rare cases so try to ease your mind and educate yourself on ways to relieve your tailbone pain naturally.

and

Injury and accidents are the main cause of tailbone pain, however a large amount of tailbone pain causes are unknown- which can be frustrating to the person suffering from the pain.

WHich sure does not help. Hopefully the Doc's can find out whats causing nhhubby pain and take care of it.

A good nights sleep will I'm sure be welcome for him and yourself.

Hugs

Bud

We will beat this crap
Posted 9/25/2012 11:52 PM (GMT 0)
My wife has chronic tail bone pain. Things that help the most are her reclining chair, a pillow with a donut hole for sitting, and ice packs. Over the counter stuff not effective. Best wishes to both of you.

NewspaperLover
Posted 9/26/2012 10:17 AM (GMT 0)
Bud and newslpaperlover, thanks for the research and experience. I still don't think it will be cancer related but it is a pain he has had before: comes on suddenly and leaves as suddenly. Just not this time. It also travels from side to side in the small of his back and lower so it isn't always tailbone.
Hopefully the MRI will show something or anything to explain.
Meanwhile a good night's sleep and waking up to no pain makes my husband's life much better!
Thanks again!
Posted 9/26/2012 10:26 AM (GMT 0)
Hope today finds him feeling better and they find out what's causing this (((())))))
Posted 9/26/2012 3:29 PM (GMT 0)
nhwife---I have the choice between Zytiga and "MDV3100" now known as "Xtandi" as my next treament. My onc says all his (his colleague's actually) Xtandi patients are nearly bed-ridden with EXTREME fatigue, and recommended AGAINST Xtandi. I see the onc tomorrow to start my Zytiga regimen.

What is your experience with SE's of Xtandi, especially fatigue??
Posted 9/26/2012 7:37 PM (GMT 0)
Sequoia - my husband did have a week of fatigue. It's hard to know now if that is still present because of the painkiller he is on now. I wouldn't say he was bedridden!
Zytiga eventually failed for my husband although we had heard nothing of the "bounce" that has been mentioned. The thing with zytiga is that you do have to take the prednisone which has it's own SEs.
I just hope we can get through this pain thing and discover what is going on. Then we have our Oct. 11th visit so I am hoping the PSA continues to go down.
Good hopes for you too!
Posted 9/27/2012 11:24 PM (GMT 0)
He got the MRI results today - nothing has changed dramatically. That's good. But they still don't know what causes the sudden pain. So that's not so good.
Right now, he has no pain, is still fatigued and kind of groggy from the oxycotin. It's almost been 23 hours since his last one so he is hoping that will clear up.
I think the intent is to compare the MRI with the last CATSCAN and see if anything shows or has changed.
But nothing obvious.
I'm just hoping for no more pain right now and that his system can get back to normal.
Posted 9/28/2012 2:40 AM (GMT 0)
nhwife,

I have been on MDV3100 since December 2011, fatigue is certainly an issue. But fatigue is also an issue with Zoladex.

I am still on Zoladex, I would not call the fatigue "extreme", the fatigue from MDV3100 for me is not much worse than when I was just on Zoladex. I have odd days when I am more fatigued. Some of the fatigue is due to poor sleeping, I find that I don't sleep particularily well and I am awake at all hours of the morning. I have no trouble going to sleep in front of of the TV at 9pm, much to my wife's displeasure.

I do have to take into account I still work full time, 10 hours per day 5 days per week and I am 68. I am not as young as I used to be. (My mind probably is younger but my body is not !).

As far as I am concerned the fatigue, headaches and diarrhoea are well worth the outcome of the MDV. I am getting fantastic results from MDV.

The diarrhoea and headaches are definately getting less frequent, in fact in September I didn't have any bouts of diarhoea. Hopefully this means my body is tolerating the MDV better and not the MDV ceasing to work. Time will tell.

The only way I can get a good night's sleep is with sleeping tablets. I rarely use them because of the multitude of other medication I take for my blood pressure.

Good luck.

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