Xtandi side effects, results, etc

I kinda hate to express to this forum that we have a little bit of good news, when I see how jitters99 is doing and bjenmou and sno many more of you out there...but I will post our latest health info....

Bone & CT scans results are in. Bone scan does continue to show tumor growth but at a minimum progression, mostly in the rib cage region. CT continues to show the lesions in the lungs and kidneys. Doctor can't verify if all of the lesions in the lungs are calcification and benign, but most of them have that appearance. but he says, "who knows what can happen to them in the future". (I believe that prostate cancer will most likely go into his lungs next, that must be why they are constantly doing these CT scans). The only way to make a definite diagnosis of these is for a biopsy, which at this time would not be necessary. The lesions in the kidneys are being sent to an Urologist, but also appear that there was no growth or if they have grown, it is minimal, which is a Godsend.
The oncologist wants to take the Power Port out as soon as he can make arrangements. Husband will continue with his monthly Xgeva injections, along with the monthly Xtandi (enzalutamide) oral medication and the Trelstar (gonadotropin-releasing hormone(GnRH) agonist), injections every three months. When and if the Xtandi medication starts to fail (raising PSA) Ted will then start on another oral medication, Zytiga ((abiraterone acetate) ). This one is also very costly, but who can put a dollar amount on a person's life? Will get the latest PSA results sometime tomorrow, so do not have that news to report to you all.
We celebrated the good news by purchasing a new "weed eater"...husband thought some would get a laugh out of that remark......

Nice to hear good news, tednsal!
Jitters, my thoughts are with you during this time. I remember too well when my brother's wife had hospice. I know my brother was grateful.
Passages, nice to hear of your outing.
Everyone else, I am thinking of all collectively - it's part of my day.
On the home front: there is an incremental change in the level of pain. The RO has been in touch with my husband and she feels that while this pain is somewhat unique it isn't alarming. She helped pinpoint the cause of the sharp hip pain - we had dug out the septic area for the cleaning out of the septic. It wasn't a big hole and it didn't take a lot but he should not have done it. We didn't think.
We will talk with her on Monday again. It's nice she has been so in touch. She did warn my husband that the next couple of weeks could still have its peaks and valleys of pain but that it will get better.
So we are holding onto good days, heck, good moments.
Thinking of all going thru this.

They have up pain patch to 100 trying to avoid increasing oral breakthrough pain meds and occasional liquid morphine, after only one day he can feel the difference. Seeping a little more today but he needed the rest to be able to visit with some friends that came for two days from Vegas. Had a great dinner and visit. Really, I think they were as tired and ready for bed as he was.
So happy,we just found out our daughter and granddaughters from Vegas will becoming on the 19th for three weeks, so our entire family will all be together. Lots of love and support for each other.
Hospice says they will be coming more frequent now to help us out as much or as little as we need. What a god send they have been,especially on how to change up medication for how his pain changes. Thank you everyone for the prayers and support. I think of everyone of you everyday.

Not in any way suggesting that anyone stop treatments....
BUT one of best things that have changed since Jim decided to stop all treatments and enter hospice ...NO NAUSEA at all. The oncologist was telling us that his nausea could be all his pain medication, the pain itself, the aggressive cancer growth, etc.etc. No treatments no nausea. We both know what this decision means..but I have to say the quality of life has improved so much and being able to watch him eat anything he wants any times he wants is a blessing.
My daughters friend is wanting to give her and her dad an "expierence" for her birthday..a sunrise hot air balloon over New England...I am so praying he will join her,even if its mean getting up at 4am..he can sleep anytime, this is truely a once on a lifetime event for both of them...they will even have a chair for him to set in.

Hoping all is OK on the Zimac front.
Jitters, hope he can do that ride!
I do not want to jinx myself but but we have had a couple of "good" days. The pain has reduced. He took an oxycodone on Sunday in the afternoon and today he took one.The oxycotin has been reduced in dosage. He got something to help with the nauseau and it really has helped. Today he sat out in the sun for quite a while.
And his appetite is getting better!
Is the radiation finally kicking in? We hope so! Life is so much less stressful right now.
But I take it moment by moment, hoping for many more moments!
[Side note: this forum has been changing. I am not sure what I am getting out of it now except for the incredible support and empathy of the ladies on this thread]

I do get what you guys are saying about the forum, but we all have each other, sont forget. I think some of it is that many of us are using are using our energy to keep going and fight for our significant other, but there does seem to be some p*****ng contest going on , family and friends would be shocked......still seems like it's a constant trying to prove a point......over and over. Interesting discussion and input at first, but enough is enough. In the end my viewpoint is the right one .

I have enjoyed Purgatory/David's recent threads about the member's hobbies, jibs, families.... Kind of interesting. Haven't felt led to post yet. Very long weeks. He ended getting two more units of blood yesterday - may have mentioned that. It has perked him up. Not sure how much he will be able to help drive south. Plan to see my son in Atlanta - Dunwoody. He wants to show his area off.

Thoughts to all - guy and gal warriors.

Jitters, thanks so much for sharing your and his day!!! Wonderful. Bluegill and balloon ride tomorrow, and friends and family..... all so wonderful. So cool.

Gunfighter - you rock too. Love it when you post.

Jitters.....What a great post! Yippee

Nancy

Jitters,

A state record bluegill and a hot air balloon ride to boot!

Please let us know how that goes. I hope you get lots of great pictures of the special moment! :)

Passages... Ok, so I just saw where you posted something similar to mine. ;)

All of you ladies ROCK! And to the gentlemen who stop in to visit, Hat's off to you guys too!

Keeping all of you in thoughts...

Weather cancelled first appt for balloon ride, next chance is Monday, keeping fingers crossed.
We were blessed with Jim feeling up to attending Relay For Life cancer event. Our 11 yr granddaughter, Ellie, organized her own team of walkers to walk 24 hrs. Our town had 41 teams with 594 walkers. At the beginning of the walk Ellie was number 1 as an individual raising the most money, so far $4,000.00, and so far as a team 5 out of 41. Her Grampa, CowPa they call him, was there for 6 straight hours, we were so amazed, it 10pm and he is still grinning from ear to ear so proud of Ellie, and feeling so loved by family and friends. 10 team members are staying over night and taking turns walking all night until 10 am tomorrow. Sorry for the bragging so long, but my man like all of our men are fighting a good fight, did his share of clinical trials, to help others, his loved ones have raised over $8,000.00 for cancer, just wish we could have handed that much money over to help some here on this list with Medication for their journey. You just pray the money is going towards finding some cures for this most terrible disease.

So did the balloon ride happen?

Hubby not doing too well and did his first, "why can't I be stronger/better". He walked a very short distance on beach, but can barely make the short distance to the beach from the condo. He is not feeling well and is down and I'm struggling with it a little. I love walking, don't mind doing it alone, but it really feels "alone". Note: I can walk without much discomfort at all - ankle surgery a year ago from tendon torn a year and a half ago that they thought was just a broken ankle (on first hike and trail at Shenandoah National Park). That part is a blessing. Another one was when we got here, we're on the second floor and some people noticed I was only one carrying stuff up and realized my husband couldn't help or hardly do the stairs. They offered to help and apologized for not thinking of helping earlier. So always some good with it all.

Nhwife - good luck on the job.

Mine, in general, has kept on and everyone comments to me how he keeps fighting. I'm not so sure it's because he's not fighting; I think he can't physically do it anymore......or right now. He may even have burned himself trying too hard. Watching him sleep last night, his legs are so thin, he looked like a very ill person.....or like someone coming out of a POW camp. Scary.

Keeping looking forward - job, vacation, or a simple good day.