Xtandi side effects, results, etc (continued)

I'm locking this thread down to keep it from crashing from the more-than-ten-page bug. Please continue any discussions for this thread in the new continuation thread:
Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (I changed the title a bit to reflect the wider area under discussion.)

(Original thread is here: www.healingwell.com/community/default.aspx?f=35&m=2615735)



Thanks.

PeterDisAbelard.

Thanks, Peter. Amazing we got such a long thread!
Update today: my husband has been put on morphine to see if that will squash the pain more effectively. He had to use a wheelchair to get in, a first.
He has a MRI scheduled for Friday to determine if this new and sudden pain is caused by a compression fracture. The symptoms fit: sudden onset. If so then a vertebroplasty might be appropriate.
We should know next week.
We asked about the comatriq (XL184). She knew nothing about it! I told her the Boston doctor did and she should talk with him.
This may be moot if the spinal procedure is what does happen and works.
We also got a prescription for a walker as he was having great difficulty walking.
So at least we have a plan.
One odd thing. In the beginning she got upset at how much oxycodone he was using. i think she thought he was "popping pills" whenever he felt like it! We reassured her that he was following the prescription but using the maxiumum number. I felt like she was reprimanding us! She apologized later. so it ended on a good note and we do feel like she is moving forward and finally got it about his pain.

Xtandi ... (early) side effects:

This is day 11 for me on Xtandi. Zytiga did not work for me. Taxotere did - but 11-sessions fairly well did me in physically. Lupron still going ... and still am an emotional rollercoaster!

Only side effects so far on Xtandi ... two mornings of the past 4 with very loose bowel movements. And ... for some reason, the past three nights, I am waking up at between 2:30am and 4:30am ... then back to sleep in 90 minutes or so! That's a new one!!! Of course, it takes little to tire me - but no apatite loss or bone/muscle pain yet!

Will be seeing the Onco on the 5th - in less than two days now - for a toxicology test (for the Xtandi) and for the next PSA. The last PSA test  was about 5-weeks ago - and was just over 23 - nearly doubled after stopping Taxotere in April!

Any great long-term Xtandi stories out there???

PCa first dx in 2003/2004

Radiation (5x5wks) & Brachy (96 seeds) in 2004

Goooood PSA readings for 6-years - then a return in 2010

Casodex - followed by Lupron in 2011/2012/2013

Zytiga - 5-months in 2012 - PSA steadily rising

Predisone and Xgeva in 2012/2013

Taxotere - 30-weeks in 2012/2013 - PSA from 54+ down to 12+

No chemo for 9-weeks - PSA from 12+ up to 23+

Xtiga start in late June - 2013

 

Jitters, Passages, nhwife. littlemn, and others, so sorry this is happening so quickly to all of you. I seem to wake up in the middle of the night now and think of everyone who is battling with such sick husbands! Mine is holding in there, but as you can see from the above post, things are starting to worsen. He went to have a hearing test on Monday and they are concerned something is going on in his ears, and one always wonders if it is a spread when things change so rapidly!
He is still doing so well compared to many, but the changes are happening! I just hope and pray that each of you gets some rest and accept any and all help you can get!
Hoping for good results for you Jitters, that isn't sounding good!
Passages, enjoy the company.
nhwife, hope things improve with the pain and walking!

By the way - thanks PeterDisAbelard.

Things for my hubby have changed drastically. After those 3 days of sleeping 22 hrs a day, his vital were still very good. On 4th day, he declined with congestion and a sore throat, we were thinking please no cold in his chest. That night was horrible coughing all night and very confused, talking not making sense. Nurse came again his lungs were clear,congestion was high up in upper chest and with labored breathing from oxygen level dropping to 87 from 97 the day before. One last "meal" of water melon was yesterday afternoon and nothing to drink but his liquid morphine and Ativan to help any pain,anxiety and labored breathing. Some response when spoken to until later this afternoon now he is comatose with meds increased to every hour,which has made him much more comfortable. I want to be up with him all night just in case he passes, so we'll see, so drained from last night. If he is still with me in the morning they will add medication to dry the mucus, can't come soon enough , and perhaps increase morphine. He feels to me like he has a fever. Keep him on your prayers please..

Oh Jitters, heartbreaking to read this today. Happy they are keeping him comfortable. Just be there with him. You both have fought an exhausting battle and though we fight against it a time comes to rest. (((()))) gentle hugs.

Jitters, you are in my thoughts and prayers. My eyes are full of tears for you. Accept a gentle hug. I am so, so sorry.

Bumping this up as we continue to hold Jitters and her husband in our thoughts and hearts.

Jitters - I will add some Canadian hugs and prayers your way. No words can express.......

Thank you warriors and friends. My heart is heavy with sadness. My hubby left me 7-5 at 5am with me holding every inch of his body I could possible grasp, and his two daughters holding his hands. I never every could of imagined the gaping hole his loss would create in my heart. I just knew that with his suffering that losing him would be much easier, that is not the case.
Our family has always done things " differently", and had promised Jim we would take him to see the Lone Ranger in his wheel chair, beings he was a cowboy in every way, I even have pictures oh him as a little boy dressed as Lone Ranger. So all of us went to see the Lone Ranger yesterday, as well as some of our friends on the West Coast in his honor. I made it through with even some laughing.
So afraid to sleep alone last night and afraid to cry all night I had my8 year old granddaughter sleep with me, she gave me so much strength and I slept well taking a Xanax. Today, my first full day with out him, and my west coast family leaving has been hard,with so much lack of sleep over the past last nights with him, I stayed in bed all day finally able to turn my phone on, and my computer to read so many comforting message.
My man was loved by so so many people. It didn't matter where he went he meant someone that developed into a friendship. I'm holding those memories tight, and thinking tomorrow I may be able to stand taller and take a few steps without doubling over in pain and tears. Thanks to everyone here who has listened over the many months, and my grand daughter Ellie and I are committed to fighting this cancer by bringing more awareness and raising more money next year. I did promise Jim I would go to my doctor visits this next week and get the open biopsy done on my throat, eat and take care of myself and move forward.
RIP Jim,until we meet again.

Hugging you tightly. Jim has peace now and you do too, a different kind. I will always think of your journey on this shared thread and I am grateful to you. Be strong, my friend. You will stand tall.
RIP, Jim.

Words fail me, rest in peace Jim.