Xtandi updates - second opinion lined up but the first opinion today

I am hoping others will add to this thread too.
We are just over two months on the drug. My husband has experienced fatigue this week. He says it is beginning to get better but he has been very dragged out. Not helping was some discomfort where the stent was replaced. But that too is abating.
No other symptoms so not too bad.
It is hard to see one's honey not being himself!

Nhwife & Sequoiranger,

We too are in the same situation with fatigue hitting from all the treatments. My husband has what he calls "Chemo Cloud". It's the dark cloud that follows him wherever he goes. Just not feeling like himself either. Although he is not on MDV 3100 he suffers from all the SE we have all come to know.

It certainly is difficult to see one's honey not himself. I hate PCA and all the ugly, cruel tricks it plays in ones life. Just venting.

Good luck to both of you. Hope you see much lower PSA results real soon.

Zimac

Bud, seems to be there everyday but comes and goes in the day. I think it really hits him around 10:30 or so. He napped for an hour yesterday.
Thanks, Zimac, for your thoughts. I think of you and your husband and hope all is well as can be. I can join you in your venting for sure!
It has been nice not to have too many medical appointments. The next one is October 11.

nhwife-fatigue does vary day to day but most days u feel like u want to close your eyes and sleep. BN

Today was our two month follow up appt.
Mixed news and mostly a rollercoaster of an appt. beginning with treatment is not working, time to do something else to not having that complete lupron shot last month plus the mri showing reduction of lymph node tumors to not a huge increase (11 to 26) made the doctor check himself and feel more confident about keeping my husband on the treatment for another month.
So the PSA did go up from 11 to 26. But the MRI did show a decrease in the lymph node growths. And when he learned how the lupron shot was messed up last month, he got very excited. Too many variables to take him off of the MDV3100. So he is on for at least another month. Lupron shot scheduled for tomorrow.
Not the best news but certainly not the worst.
In the meantime, it is clear he has some bulging discs, maybe even a herniated one. So we are getting acupuncture treatments and also going to a pain management clinic near by.
I am mostly exhausted right now; he is sleeping.
But I feel it was significant to keep him on the drug for now.

nhwife

Hugs! Sounds like a mixed bag of results there. Hopefully the next month will yield a lot better overall results for you two.

The bulging discs? What are those being attributed too?

Staying on the drug is definitely positive.

Be sure you are taking care of yourself!

Hugs

Bud

We will beat this crap!

We had our appointment today. PSA is up to 36.1 so it has gone: 30-11-26-36. We won't have an appointment for another two weeks so for now my husband is staying on xtandi. Somewhat discouraging but not the worst news in the world.
If we can get through the rest of the year on this, then our plan for the new year is to seek another opinion. We will actually start working on that immediately. We have a Cancer Center in mind where my sister in law received wonderful care for her pancreatic cancer.
It feels like a blow and I know my husband will go through a dark time for just a bit.
Wish I could snap my fingers and make this go away.

Nhwife,

Definitely disappointing. Wish we could snap our fingers.....for all of us and spouses. Hoping just a fluke and will go down next time.

My husband has been on the phone with getting the referral and all his paperwork sent to the new place. We are feeling very good about this move, very positive. We will be checking into and asking about everything! some recent posts on HW in regard to recent treatments or updates on them have been VERY helpful.
As Raddad says, no one fights alone, thank goodness.

Hope it works out. We met our new Dr. and seemed good. Spent time with us - not as long as our other one, but not much new to ask or talk about yet. He is the Provenge Dr., but we never qualified. The nurses and facility were nice, missed our old ones; but this will work. The Dr. also said next step probably Xtandi, but right now Jevtana maintaining - 46.2. Not good, but not bad. It is what it is. Raddad, I know we don't fight alone, but sometimes and some days it feels like it. Nhwife, keep us up.

Hi Jitters, My husband does not experience nausea. He takes his pills in the evening, around 6:00.
So far his SEs have been fatigue and some bone/muscle ache,especially in the pelvic area.
Is your husband on steroids now? Mine is not - the only pills he is taking are the xtandi.
Sorry to hear of this SE for your husband!

nhwife (or any other Xtandi paitents, for that matter)--Where are you getting your Xtandi?? My seemingly "experienced" pharmacy, "Curascripts", had Zytiga, but does NOT carry Xtandi! I am thinking Xtandi is my next option, but I am having trouble finding it. Do you have a source?

We have our second opinion appt.! It's going to be on Friday, Nov. 30th. We are amazed actually, having thought it would happen in December. The appt. could be almost 2 hours in length - the doctor is very thorough. All the paperwork has been sent and gathered.
Should be an interesting week: we meet with our current onc on Monday and then our second opinion onc on Friday!
We are feeling very hopeful. As my husband puts it, starting a new path perhaps.
It's the first time we have taken the controls so to speak and it feels good.
Happy Thanksgiving everyone - I am most definitely thankful for HW!