Xtandi side effects, results, etc (continued)

You "Warrior Women" continue to be amazing in supporting your loved one and your "Band of Sisters". Somehow, you even find time to support members of this forum like me when I had a "flameout" and vented; Nhwife, I thank you. Tednsal started this thread long ago when Bud and Silverlace's husband were fighting their battles and it is now in its 2nd edition. The moderators completely support you and 142 has booked reservations to be at Passages" Asia's West Point graduation--awesome support!

Last month was terrible and Jitters, Judy, and Bjnemo lost their spouses but not without a heroic fight. They did everything possible to squeeze every drop of life out of every day for their husbands; I salute them. Your discussions and sharing on drugs, sequencing, side effects and what to expect with palliative care and hospice benefits you all and other members who are not where you are at yet.

Although I dread to read about your journeys many times, there are instances when I actually smile. Every time that I see a real estate advertizing balloon I laugh. I recall Jitter's husband Jim initially afraid to go on a balloon trip since "he might die". He went and the balloon crashed in a corn field, an irate farmer berated Jitter's and her daughter for tearing up his crops, and to top it off they got their vehicle stuck in the mud; this was terrible to experience then but wonderful to remember now.

I have also grinned at Passage's journey when her husband "naps" in church and she has to put up with and clean a "skunked up dog in her house due to her husband's screw-up. They honor rich Southern Civil War traditions and I can picture the clan with Mike in his colonel uniform along with Asia in her West Point whites for photos that will last for generations. One of my favorite songs is Joan Baez's "The Night They Drove Ol Dixie Down" and I'm a "darned" yankee.

Sorry for rambling, but "keep on keeping on" and wearing your hearts on your sleeves.
Grandpa Bill

Thank you Gunfighter and Southern comfort. Gunfighter what a wonderful summery. When talking with hospice nurse whether it's feasible to have him fly in the private plane, I thought and mentioned Jitters and the balloon flight. Hospice nurse did bring up one of my major concerns, which if something happened to because of the trip, how would it affect Asia. She's tough, but ......

I haven't studied how or if you can post pictures on here. Would love you all to see them.

Passages,
I would love to see your photos! Someone where you live must be beyond where we are at and could help you..If Mike is able and wants to, I recommend that he takes the private plane trip to see his beloved Asia at West Point--you would have given him something to look forward to.

The pilot must be intelligent enough to fly a plane so give him a brief copy of Mike's medical records. If something happens it happens and Asia is stronger than you think if she's to be a 2nd Lt in the US Army.
They would both love it however it turns out. I wish you well in making your decision.
Bill

Gunfighter and Southern Comfort, and all the warrior ladies. This thread has kept me going when I thought I couldn't, it reminds me of some of our good times and makes me laugh, and then I read someone else's journey and it makes me cry.
Passages, you can what if Mike's plane trip to the moon and back. Asia can and might blame herself if something bad happens, then again she might understand the truth....if its his time, he will leave you and your family wherever he is. Most of us find something or someone to blame when they leave us, but it's usually wrong.
Today, I just needed a good cry, every time I go to the grocery store, is that stupid or what, the friggin grocery isle. Why???? I still can't believe he is never coming back.
Does anyone on this tread live near CT???

Jitters99...it's always going to be "the little things" that will awaken those hidden tears......it will be the way you park the car, or the way you cooked a certain meal, or a certain movie or a TV show that you both shared a laugh at, you will remember his words time and time again. It will soften...and you will start to smile more then tear up when those "little things" occur...because you will hear his voice speak those words again, in your heart and smile and remember. I so wish we were closer for you, we could have a good cry together.

Passages and nhwife.....time sounds short for you both, do what you can to make "him" happy, he may want to go see his daughter at West Point, but he knows in his "gut" that it's not possible. Why not see if you can have a "live feed" from there (Skype or oovoo). That way, no worry about "what could or couldn't happen". My husband wants to do a lot of things, but now he doesn't have the strength or stamina, and that in itself is a "killer". You know men, "go hunt, bring food to cave"......
nhwife....new job, new learning curves, and then home with husband.....you have a real "load". I wish I could help you as well.

Dreamer44 and smo1....get posting...we are listening.....

We need you guys out there...a little rah, rah....every now and then helps us "cope"....gunfighter and Southern Comfort.....keep those accolades coming....it helps.......

Hugs to all and good night!

Retreat sounds wonderful. Enjoy! Everyone have a good weekend.

Thank you for several suggestions about palliative care. It's handled here through our local Hospice organization. Calling them is on my to-do list for next week. I'll look into lifeline too, in case he has more mobility problems.
Physical Therapy eval done today and PT will come 2 X/wk to help with balance and regaining strength after stroke. I've been retired for 2 years and can't imagine how difficult it would be to juggle a job along with being primary caregiver. We also have my mother in law who is 88 and living in Poland. My father in law died just a year ago at 95. My husband made what was probably his last trip to see his mom in June. He is an only child and now cannot be there for them like he was for the past 7 years.
His brain is starting to heal from the stroke and he is walking just a little better and can stand for a few minutes. He was lucky not to have had more damage.
NHwife = got a smile from your hair cut adventure. We had ours done just a day before his stroke, since he finally grew back hair from Jan brain radiation. It's curly on one side and straight on the other. Our hairdresser said that's a first for her.
Tonight will be his first dose of Zytiga and I hope he does well on it. The Xtandi took his PSA from almost 1,000 down to 18! Now it's rising quickly. At least the PSA is a good monitor for how well a treatment is working, but the high readings can be upsetting.
Ladies and gentlemen too, your posts are always helpful, sometimes sad, sometimes funny, but so important for all of us.
Pat

Jitters, I used to keep a journal every day and haven't been for years. But I have been thinking about starting up again!
My husband's second blood test came back stable with the liver enzymes so the onc gave us the go ahead to order the cometriq. Our second batch is due this Wednesday. We take this as positive sign as possible. We don't see any improvement but nor do we see any worsening.
Actually the new job provides me with other things to think about other than this dratted disease. I do worry about my husband which is why he wears a lifeline right now. Which is why we are talking to the nurse on Thursday to find out what else is available to us.
I feel guilty some days.
But I have to work and it is better to work only 25 mins from home than 3 which often happened in my old job.
And this job is better for me in the long run.
Thinking of everyone - let's get thru this week together!

Smol..don't know how you work with an oncologist that spends so little time with his patients...is this the "norm" out there everyone?? Cause if it is, we were blessed with a oncologist from heaven who spent all the time that was necessary to get every question answered we had. Maybe because of the aggressive cancer Jim had, but I don't think so. I seen it with all his patients, even if he had to leave and see someone else and come back to us, he did. From the very first time we meant him.
Then to give me his email address, to which he replied EVERYTIME within 24 hours but usually 12, and his cell number, which he always picked up,even if he was with a patient, to tell me he needed to call me back, or at a convention in Italy, he was always there.
As hard as its going to be to revisit him when I return to Vegas in Oct, I will be able to thank him for all he did for Jim and for the special attention he gives to his patients...

Nh wife. Totally agree about changing docs if you are not getting what you need. Mark changed oncologists from Moffitt to a local oncol practice with statewide offices. While he had a uro/onc specialist for over 10 years, when his PC became aggressive in 2011, they continued trying other injectable hormones and delayed moving him to HRPC drugs. His urol at the time was treating his bladder symptoms as infection for almost 6 months. A change in urol (referral from new onc) got him into surgery with massive met PC in bladder (gleason 10) and kidney blockage. My my message is simple: if your gut says it is time to change, it is!

Just letting all of you incredibly strong ladies know that you are still being kept in thoughts and prayers.

Gunfighter, that was a most excellent post to the "Warrior Women!"

Passages... I was hoping to see an update from you. Wish you had a better report....sigh

All of you ladies are amazing. Huge hugs to ALL.

Be blessed, my warrior friends...

Passages, so many prayers coming your way and what beautiful sentiment from Jitters. May you and Mike, Asia and family stay surrounded by love and appreciation for what you have. So much support from friends to help Mike get to West Point.

Jitters, love your first meeting story, and please share more as you walk through your precious memories.