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

Hi Zimac,
Good luck with this new treatment...i do really hope it works.
Please let us know the updates.

I've been busy with work lately and can't keep up with all the posts but I always try to drop in here and see how things are going.
You all are in my thoughts and prayers.

Zimac, please keep us posted on the XL 184. Is he in a trial or just getting the XL for sure? The trial my husband was offer was XL184 plus a type of chemo, either or both being a placebo and he decided against doing it and entered hospice instead. I am amazed how he is doing after more than a month of no treatments. Losing weight so I am going to start making protein shakes for him. He isn't awake the number of hours required for him to eat three meals. Going to try waking him up earlier in the mornings to try and push in a morning meal, he prefers to sleep until 10, 11 sometimes noon..too long without food. Today the nurse put on a DNR bracelet, that was hard but necessary. We do go out to our grandkids sports events, and we need to make sure no one calls 911 should something happen.

He does have pain, on 75mg fentanyl patch, and takes 4 mg dilaudid morning noon and 8mg at bedtime. If we go any where he walks he needs to up the dilaudid. Getting him in a wheelchair is difficult, he says one day soon that will be my only mode of transportation, I want to use my legs as long as I can.
I received a call from my ENT yesterday on my neck biopsie and they didn't get enough tissue with the small needs aspiration so now I have to go for a ultra sound guided core biopsie this week..darn the waiting is driving me nuts. The nodule is so sore from the first test.....sigh...

Jitters, what a bad break for you - the delay in knowing. Hate not knowing.
Almost two weeks done of radiation. My husband is feeling the fatigue, a slight nausea, and the hip pains. However he does say one pain is gone, the one around the kidney. Food is not tasting good to him so I'll make sure he eats what does taste good.
He is actually bolstering me these days, saying that there were no guarantees of the radiation having an immediate effect. We need to be patient - NOT our favorite thing.
He is being clear on immediate plans: no more scans etc for the month of June. He wants a break until after we come back from our week away in early July. I have to back him up on this. He deserves a break and hopefully will begin to feel a bit better.
Thinking of our crew and also of some of the new folks who are feeling the sharp edge of panic over the news. I remember those days well.
Healing wishes for all.

Nancy - FINALLY - that is a ridiculously long time. Hoping that means it's good. Anyway, touching bases is good. Try to enjoy the weekend, even with the wondering.

Jitters - more and more waiting, aggravation, and just stuff - just not fair.....temper tantrum here. Seriously, hope it's the end of this little path for you next week and hoping his pain decreases in other areas or is bearable.

It's so hard when they don't feel like eating, have no appetite and/or food tastes bad. Another se that has mostly changed back to better. There are certain foods that don't taste good, but he is eating well and is learning to eat with the ONJ (still numb).

Nhwife - glad, at least when posted, that is was a better day. I understand the need for a break from tests. We're rather tentative about backing off on much with his multiplied spreading and his doing better.

Zimac - hoping the new regimen going ok. Think we're all waiting to hear on this.

My husband has continued to feel better. Quite busy today - went to his remote office, funeral, short rest, eye Dr., working on church committee stuff, preparing for re-enactment weekend (in town and son will be with him), have kids overnight, and still going. Think the transfusion seemed to help, but maybe getting more of Xtandi out too. Taxotere, so far, not bothering him. In a way a little scary or something, knowing how massive his mets are. I know, I am being grateful and surprised.

QUESTION: I think this has been mentioned, and not sure how connected to anything; but his eye sight changed a bit in a short time. The eye Dr. didn't even charge for anything - exam or new lenses, since it was so soon.

Take care all. Time to collapse. Long day, especially at funeral and doing the funeral luncheon. Lost a very special healthy friend suddenly - sepsis to probably mini strokes. Kids and oncologist tomorrow. Hoping they sleep in closer to time for the 6 year old to go to school. Other one all done with pre-school, so she's with us through whole appointment. Hope daddy gets off work a little early .

Passages, we are getting ready to leave for monthly appointment to the oncologist, but saw your question about the eyesight. Since being on the Xtandi, my husband has been having eyesight issues. His eyes seem to be "cloudy" looking and he says at times he feels like he is "seeing under water". He has been to see his eye doctor for a routine checkup and his vision had changed quite a bit since last year. Don't see the vision problems listed as a side effect, but now it really makes me wonder since it seemed to come on so suddenly after the start of taking the drug. He finds putting drops in his eyes to lubricate them helps, but of course doesn't take care of the vision change. Would be interested to know if anyone else taking Xtandi has had anything like this happen.

Radiation update - 4 more treatments to go. He has had nausea and diarrhea the past few days. We spoke to a different doctor yesterday (ours was out) and he said the nausea was possibly due to the narcotics my husband is on. He suggested 15mg of Benedril 3x a day. So we are trying that. For the diarrhea which is a se of the radiation, he is taking immodium which seems to be working. The doctor also said when he looked at the xray last Friday he did see some tumor shrinkage! That is good news. And maybe eventually will impact the pain my husband feels continually. We will most likely see our regular docton briefly today to follow up on yesterday and then on Thursday will be a more final session, looking at what has been done and what might be done in the future.
At this point, my husband wants most of June free of doctors. We do have one appt already June 17 and he realizes someone might want some scans done but that is it, he says!
He is hoping to recover so he can enjoy our July vacation.
Best to everyone - I'm hoping for good news for everyone, anything to keep us going, right!

I'm thinking it sounds positive also - we have to go with what we can . Again, a fairly free month sounds good. We have two+ weeks in the next month that we plan to have free of all in office type treatments. Take care all.

Yes, things much better, relatively speaking. He's still not back doing a lot, but more. I think he's now starting to get the se from chemo. Seems a bit down, still weak, but he's not sleeping as much during the day.I'm exhausted trying to keep up with everything. My son is taking time off while we're gone to redo the bathroom and paint. Getting everything ready is overwhelming and keeping up with lawn and regular stuff. i think that discourages him. Usually do special stuff on kid days (Monday zoo); but today she helped me clean windows, lawn chairs, etc. We both ended up soaked, but had fun. How's all with you Nancy?

Nhwife, sounding positive and at least hopeful and some time to take a breath. Hopefully you can relax and enjoy too. It's hard especially when a variety of symptoms happen and there simple and not so simple explanations for them. Does seem odd that the one didn't think nausea was connected to radiation. Are you comfortable with June call in? Seems kind of nice way to check in. Take care.

nhwife, so sorry to hear your husband is having such continuing problems! Sure hope you can enjoy your vacation.
My husband is now 8 months into his Xtandi. Still having vision problems and is aching all over most of the time. At his doctor's visit on Thursday we learned his PSA was .19 for May, which is right where it has been since chemo. The doctor had previously told us that he didn't feel my husband's pain was from the medication or the cancer, so he doesn't even mention the pain to him now. My husband said yesterday that he would rather have more chemo than to feel like he does. Said the chemo wasn't nearly as bad as this is!
Well, today is his 67th birthday, so we will celebrate and hope the pain will be manageable.
Hope each of you has a great day and that we hear some good news from you!

Been a rough few weeks, our trip to the beach ended up with him in the hospital with pneumonia and a UTI. (Last trip to the Smokey's ended up in the ER too. He was/is extremely disappointed that we couldn't have that trip with the two of us and do anything. He tried taking a walk on the beach and got in the pool, but could barely hold himself up. My daughter and sister came down for support and help with drive back home. We got home Sunday. He will be getting scans on lungs and liver (liver function tests abnormal). He is weak and fatigued. Dr. also he may be getting chemo blues.

We came home to some painted rooms, re- done bathroom; but still have the multiple boxes I packed up still to unpack. Also have Grandkids everyday this week and Vacation Bible School.

I have read the posts and thinking of all of you, sorry for not personally addressing you; but just a bit tired.