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

I have rarely posted for us, but have commented and been a part of Xtandi discussions and tried to be supportive, and I'm not even sure how to be concise and clear. Help with what to say, ask, insist on or do next at doctors on Tuesday.

My husband has been on Xtandi for 3 months. He was doing well outwardly until than - working part-time, a variety of volunteer jobs with many weekly: scouts, ushering, museum center; plus leading an re-enacting crew.....on and on. This weekend he could barely walk into church or stand at a friend's funeral. He's lost @ 30 pounds. He is on Megestrol, but hasnt helped with appetite. He tries and eats some. PSA has gone from 70-@268.

Over two weeks ago his PCP told him after his yearly to call oncologist immediately, (he was in shock about his condition, PSA, etc.), indicating he should get off medicine and something should been done ASAP. Response wait for appointment.

Over a week ago his jaw went numb like having novacaine at dentists. No tumor, but apparently from Zometa and probably permanent. He also has been in pain at night, so he finally got pain medicine and now for almost a week hasn't been able to go to the bathroom - BM. Tried a variety of stuff to no avail.

He has also had on and off fevers since January. On 4th or ? Antibiotic. Dr finally said probably fever from tumors or possibly Xtandi. Also has had a cough, not all the time, but there with blood now.

He is do sad and looks terrible. He has been able to joke, tease; but can't now at all - that's never happened. People that know him are obviously shocked when they see him. It hurts and frustrated that Dr. didn't have us come in a couple of weeks ago or take him off Xtandi last month. They just keep saying you have an appointment. Appointment Tuesday. Please help with suggestions. I know there is not much more out there, but he was doing very well until the Xtandi. Don't know how much is Xtandi, cancer, or what; but really feel Xtandi has certainly not helped.

So sorry to read this post. It must be very frustrating for you guys. Know that all of us at GFMPH will be thinking of you guys. Please keep us posted.

Cajun Jeff

P,

I can't help with chemo drugs (not there yet, but will be). After some colo-rectal surgery and RT damage, I can offer avice on bowel issues.

My old stand bys are docusate calcium (not sodium, Rugby is the lowest-cost option) one 240mg daily as a stool softener, and if things just don't work, a tablespoon or two of mineral oil about 10 at night will provoke a bm about 6 am. This was prescribed by a 'Nam era Army field surgeon who came back to specialize in colo-rectal issues.

I was put on Megestrol AC 20mg twice daily for my hot flashes, but it induced cravings like you would not belive. Salt & Pepper Kettle Chips at 3am. I had to stop them. I mention this because that med really did increase my appetite, so I wonder if there is something else that is causing the lack.

As to the GFMPH weekend, come on out. A bit part of the reason we can have a good time is that we all know about each other's elephants in the room. I can round up an extra cigar and scotch glass or two.

Passages,
darn warrior woman, if I had any arrows or bullets to help you they would be yours in your fight..My expertise is limited to beer so I'm not much help..It hurts to realize that you 2 are going through hell..Keep up your wicked sense of humor for your husband's sake; I'm sure he appreciates it..
Bill

Hi Passages,
Did you guys consider going for clinical trials? My dad is undergoing something similar. After 3 chemo treatments his PSA went from 220 to 680 in just 3 weeks. He just started zytiga two days ago. Let's see how it goes.

P,

There is a special Italian red for those who don't like scotch. You do have to be there to win

I used the mineral oil for months. The downside, so to speak, was that when I woke up, well, lets just say the throne had best be unoccupied.

Passages, so sorry you guys are going through this. Your story is so similar to ours.

Xtandi - not so good. We feel that began a lot of the problems my husband now has: pelvic area discomfort, back problems, and even a sporadic sciatica problem. Plus fatigue.

I wish I could say going off the xtandi will alleviate the problems but it hasn't for us.

Constipation: what the doctors do not tell us! Constipation due to taking pain meds is a different constipation. The opiates actually paralyze those muscles so you need to be on top of it. My husband is still struggling but this is his recommendation: first of all, if it has been a few days, your husband needs to get "cleaned" out. Milk of magnesia does this trick. Once cleaned out, begin a regimen. For my husband it is 3 senna and 1 colace in the am and the pm. It sounds like a lot but the oxycodone is also a lot. It may be different for your husband. He will have to find what works for him.

Zometa: my husband did have that and suspended it when he thought he might have to have some serious dental work done. He didn't have to have the work done and no oncologist has recommended that he go back on it. He does not have bone mets. (The oncologists who share this recommendation include two from Dana Farber)

Pain: I feel we need to do something more about this and i will be questioning our doctor next week. My husband has been in pain for such a long time and the toll on him is awful. I don't know what can be done but I was thinking a referral to a pain therapist or consultant. (Are these folks usually tied into hospice care?)

Appetitite: It has changed. There are things he used to love he is not eating anymore. I have read some where that pain/cancer does affect ability to eat in volume. So we are concentrating on smaller meals and lots of snacks. I bought some Ensure (someone on this board recommended this) and he enjoys that. So far, he still has an appetite, just different.

Hugs to you. This is so darn hard. I know this morning I had to gear myself up for when he woke up. Would he be "ok"? Would there be too much pain? Would he wake up in tears because of it?
This morning he is ok and we will enjoy that.

Email me anytime.

Passages....so sorry I have nor posted until now. We are just home after 6 months in AZ and the kids have all been converging upon us. Free food and alcohol almost as enticing as us....actually more.

I wish I had some great ideas for you but I am afraid I have nothing to offer other than very, very strong thoughts and hopes that his glimmer of energy stays for a very long time. Good luck tomorrow

Anxiously awaiting a good update from you tomorrow

Nancy

P,

 

"input on necrosis of jaw from Zometa? Is there an alternative?"

 

I am on Prolia. That and Xgeva have the same warnings. I don't have any advice to offer, but my uro required a clean bill of dental health from my dentist before they would give me the shot. I asked the same question, and was told this type of drug gets the best results.

If you are worried about the jaw issues, Prolia has the same risks as Zometa. Wasn't very clear about that. These drugs are all very similar in risk/benefit. They asked for a dental review because it is during dental procedures such as doing crowns, root canals, and extractions that you are at highest risk.

I need some sort of work to stabilize teeth now (shifting as a side effect of the osteoporosis worsened by the HT), but no dentist will touch that project due to the Prolia risks.

I remember that ride at Disney World. Is that the one that ends with the log hitting the water, and everyone getting soaked? I had on white pants that turned see through!!
I am sorry you are dealing with young children and family members who don't know the appropriate boundaries to use when dealing with couples who are just trying to hang on. I'm dealing with a step family situation where the lack of compassion and empathy is unbelievable. All I can say, is we here recognize the seriousness of your situation and wish you and your husband some peaceful and painfree days ahead. You shouldn't be trying to handle little ones while you are holding up your husband and trying to keep him going. Even though seeing grandchildren can brighten a day, it is up to the adults to make your load lighter, not add to the burden. I need to have a talk with that mother....

Beejane, you made me laugh when you said you needed to talk to my daughter. Good luck. You'd think she'd know better. She's a social worker and works in ICU/trauma care. Very intense and painful for her. This year I only watch them 3 days during the week and sometimes on weekend. One is in first grade, so just get her ready for school and some after school time. I'm hoping his care doesn't get too intense until the little one is in kindergarten next year (wishful thinking) because if he's like this weekend i couldnt do justice with kids and him. Her in-laws are in town and generally don't help much. One of the aunts took the little one and her older daughter's grandma picked up the 5 year old from school today. Nice for a break. Suspect my daughter was very dramatic. She is the only daughter with three brothers, so her dad is very important to her. And her oldest daughter is very important to him. In her 3rd year at West Point and his goal has been to make it to graduation next year. That hope has been taken away - this is where Bud and a couple of the guys come in and tell me to believe ;-).

Well, I'm not Bud, but I will send you a gentle hug, tell you to hang in there, and say you are in my thoughts and prayers! This stuff is so mean!
I sure hope you get some answers tomorrow. My husband is hanging in there on the Xtandi. He has lost quite a bit of weight, maybe from going off the prednisone (?), maybe the fact that he has been trying to loose weight (?), or maybe the fact that he eats such a small amount anymore. He remains quite active, but is still having that pain in his back and I notice he heads for the Advil bottle more often than ever before.
When my son had jaw surgery, I gave him Ensure with ice cream mixed in. Made it a bit more flavorful and since his jaw was wired shut, he needed all the calories he could get. Just an idea for you.
It scares me when I see all the posts regarding things taken for the bones. My husband has had HT for almost the entire past 12 years and has never been told to take anything for his bones.
I really wish I had some answers for you! I am just so sorry that you and your sweetie are having to go through this.
Take care and I am anxious to hear what your doctor has to say!