Help! Advice, anything. Xtandi, Zometa What's next?

Passages, thinking of you today with your worries about weight, PSA, and what's next. We have such an appointment next Monday.
Yesterday was not such a good day. He is talking more about his fears about what's next, if there is anything, and how tired he is of it all. I share his tears but try to say we need to keep going and not to give up. Then he'll give a small smile and say I can't get rid of him that easily.
He is losing some weight too and just basically stamina. I got him outside in the sun yesterday for a bit.
Today he has his CTscan and bloodwork done for next Monday. He wants to stop in at the urologist's (right across from the oncologist) to let him know that something is still not right with the kidney. Not sure what can or will be done about that.
I talked with my brother yesterday who has been through a lot of this with his wife who died from pancreatic cancer. He said friends were always asking how they could help and it's such a hard question to answer. Finally he told one friend if he could mow the lawn around his studio, that would be great. The friend did it all season.
We are learning to ask for help as I really truly can't do it all. So today our neighbor is taking my husband to the hospital for the scan. I could go but it's more time away from work and I need to work as I am the only one. A lot depends upon my working!
It's hard to ask for help because I feel I should do it all but I simply can't.
Anyway, thinking of you, Passages, today. Thinking of you all fighting this beast. Thinking of and missing Rad's chant you will beat this crap!

Passages & Nhwife,
I don't have a lot to add, I just want you to know that you both are in my thoughts.

Thinking of you today Passages....all my best. What can i say?

NH - I will start my thinking for your appointments next Monday tomorrow.

Thanks littlenm, too young4this, nhwife, appreciate thoughts so much!

Nhwife, how's the vomiting? It never ends does it. So tired, but got to keep fighting.

My daughter went with us. I Had a list, including letting him know we needed better responses when we call. Think his nurse is now aggravated with us. Told My husband not to call unless fever high, because he always has fever trouble - oops. Actually we haven't except when they first started with fevers or high, but whatever.

PSA was 241, so obviously off Xtandi. He did not get the umph from the transfusions like last time. Dr. basically said the only choice was Taxotere in lower doses. Said he couldn't qualify for any studies. The Dr. was more empathetic and gave him a "let's fight this together" speech with telling him he needed to fight too. I think he sensed he was/is very down. Also told him not to give up and to fight for 2014 graduation. So we start Friday weekly for 3 weeks and off a week. He definitely didn't want Taxotere. Dr. did say QOL important, so would watch side effects. Sigh, for all of us.

Thanks Bluebird. Hope things are going as best as possible for you.

Seems like our little corner of the world is getting very hard hit, Passages, littlenm, radsgrrl22.
Passages, I kind of feel we will be right there with you when we hear the reports next week. I need to gear up for hearing about a rising PSA. Like you, we are wondering what next. (My husband articulated this for the first time yesterday with fear) I am thinking chemo. Maybe like you, a smaller dose. I am betting we'll be hearing Jevtana too.
No more vomitting. It may have been a combo of shrinking stomach and a se of the ctscan. I'm hoping for a much better day for him. I always hope.
He did stop by the urologist's yesterday about his kidney. The stent is working fine; the uro who looked at the ctscan says it is the lymph nodes. That tells me maybe that they have grown. (Love this uro - he always makes time for my husband!)
Thanks, bluebird, for your thoughts. They matter so much!
Jitters, I think the radium223 trial is for bone mets which my husband doesn't have, as far as we know as of today. If I am wrong about this, sorry.
I do appreciate any suggestions of what is next!
Thinking of everyone.

Silverlace, Beautiful words. What's your latest update? Your battle has been hard.

NHwife, sounds like a neat urologist. Glad the vomiting stopped, but still just another piece, bump,

To all Jevtana was not the "poisonous" for him, just didn't work in long run. I think 7 sessions. He does have bone mets, but his Dr. felt it would just "fry" his bones. Not available here yet anyway.

Hugs to all, but especially those of us on the last paths.

Oh Passages. Sigh is right! Small win that the doc is finally acting more compassionate. What a difference to have a doc like NH compared to yours. How does he plan to monitor the QoL? Will he take your word for it and return phone calls? That sounds a bit witchy on my part but that is how I feel.

You should not put our situation in with yourself, NHwife and Jitters. Luckily for us, things have not progressed as much at this point. We are going for a bone scan on the 22nd and hoping that the mets that were discovered in November and had increased in size and number in February have slowed. Pain is only an annoyance at this point. I follow you two as I learn so much from you both medically and how to be a compassionate loving support.

NH - I didn't realize that the vomitting had subsided. Hallelujah! That by itself can be so draining. We have a great uro as well and I thank my lucky stars every day.

Jitters - When do you get your MRI results? I am sure that is a difficult wait

Sorry, wasn't clear no Radium 223 here; however our Dr. said not a good thing for him. I think too many bone mets. He also said if would fry his bones.

He will be getting a total bone scan next Tuesday. Hasn't had one in a year. Littlenm and Jitters and anyone else make sure to update us on scans.

We see Dr on Friday. Will have MRI results also. I just know in my gut things are not good. I'm sure he has lost at least 5-8 lbs in last month. Nauseated every day,vomits every morning at least. Has so much pain in his shoulders and right arm to elbow,where there is a lot of mets. He is just so tired and worn out, no smiles, actually no nothing to say. Took our grandkids and 2 daughters to the children's museum today, he asked for wheelchair, even a month ago he would have never agreed to get in a wheel chair. One daughter and 2 grandkids leave Friday morning before we see doctor, we will both be so depressed. On a happier note. We did have his fund raising event Saturday. A perfect day for friends and family and Jim was up all day..worn out but up and smiling. We raised over $3500.00. Not much when you think of research but more than I could have donated on my own. I think this event was a goal date he set praying he lived to see, he did..we did..So afraid he may decide he's not up for more, especially if the MRI shows brain mets. Sigh!!!!

Passages...I really, really hear and feel your "cry's.....What's next? We have no control over this disease and all we can do is pray and make our men as comfortable as possible, adhere to all of his whims and give him all of the foods that he thinks that he might want, to help alter the weight loss.

All of you PC warriors, all over this nation and world...we must strive and help our men and each other. We also need to be replenished with comforting words and a little peace of mind from time to time, this will help us to be able to re-gain our strength and the ability to smile, when inside our hearts and bodies are breaking. This site is invaluable to me for I find I am not all alone in this PC world, you all are helping me with my struggle with each passing day.

My husband started on Xtandi in January and has not experienced any nausea or excessive weight loss (although he is overweight and is trying to lose a few pounds). His appetite is somewhat suppressed, probably from the medication, so I fix him whatever he has a "taste" for. Has swelling in the ankles and lower part of the legs as well as some swelling in the wrist area of both his arms (taking medication for this). Pain and discomfort (in his back and rib cage area) when he moves, like getting up and down from his recliner and laying down and getting up out of bed. Husband continues to take all other medication while on Xtandi, has very little energy/fatigue most days and has moments of depression. Bone & CT scans scheduled for the 27th of May. PSA went down to 12.71 from 13.42...we did have a PSA of 196 not to long ago.

We just recently sold our RV (hated to do it) after spending three weeks over in Hilton Head Island, but it was getting a little too much for husband, so we sold it "lock, stock and barrel" a few weeks after we got back home. Have our house up for sale and two of our three vehicles. Trying to downsize, just "in case".

He has been on HT since 2000 and has taken calcium and vitamin D every day since diagnosis, expecting it to eventually to go to the bones, which of course, it has with a vengeance.

All I can say to all of you "warriors" is to "keep on keeping on"....I haven't posted anything in awhile but continue to read all of your comments, ups and downs, new ideas and possible suggestions while we are on the see-saw trip. Ideas and suggestions are so helpful to each of us...because sometimes it's an unknown area we are in and need that helping hand/advise....Gosh, I have many teary eyed moments, worried about what's next...but I should relish in the moment and not worry about the next one until it arrives, "easier said than done"...I know......I know....

Waiting and watching for all of your updates "PC warriors"........our next appointments are for the Xgeva injections and then the scans....good thoughts and prayers to all of my compadres here on this site.

Thinking of you ladies, and your husbands! Jitters, Passages, nhwife, tednsal, hope you are having a sunny day, so much easier to deal with life with bright light and warmth. Admire your courage and your unselfish sacrifice to your husbands...Silverlace, sorry to hear that, you are in my thoughts.