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Xtandi side effects, results, etc (continued)

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Posted 7/20/2013 12:44 AM (GMT 0)
Have been gone for a while with no cell or internet, so haven't been able to read what has been happening here. Also haven't been able to long on since returning, so it has taken even longer to post.

Jitters, so sorry for your loss. My heart hurts for you! I so agree with your last post, I feel the same. I have always supported my husband in his decisions regarding treatment. I would want him to do the same if it was me! I think it is wonderful that the last month and a half were so good for Jim. I am sure the time spent was a blessing to everyone who was able to be a part of it. You will be in my prayers as you have your biopsy on Thursday. Please keep everyone posted!
We spent many hours in the car over the past couple weeks and my husband really has felt the affects of that. He was to his oncologist on Tuesday and his PSA for June was .15, so it continues to drop on the Xtandi. The aches seem to increase everyday, but he tries to stay busy and is still just taking Aleve occasionally for pain. All in all, things are going well.

The new treatment of cometriq sounds interesting. Will be looking forward to hearing about it.
Posted 7/22/2013 2:55 AM (GMT 0)
Jitters - thoughts for tomorrow and Thursday. I think your comment was totally appropriate. I appreciate it a great deal.. I am going to as about the XL184 on Tuesday, but it appears to be mainly a trial and I know we can't do that - been there done that before. If it's not, I will see what the Dr says, call the number I was given, and do more research......just so tired, we both are. If there is anything to get him to Asia's West Point graduation, we'd do it. Right now we are tentatively planning to go to her ring ceremony late August; but not sure it's going to be possible, if he can't hardly make it to church. It's a 12 hour trip - we'd take 2 days. He doesn't want to fly, it's not simple to get there from the airports.

Anyway Jitters, I appreciate your perspective. The last two years have been a fight.
Posted 7/22/2013 9:44 AM (GMT 0)
Passages, you can get the XL184 without the trial. At least two things need to line up: your insurance needs to cover it and you have to have a doctor willing to prescribe a non-approved treatment for prostate cancer. Our local doctor would not. Our Dana Farber is willing. The dosage is much lower than used for thryroid cancer.
So it is possible to get it without the trial. Like you we were not willing to go that route.
Jitters - thought about your words alot on Saturday as my husband had such a wretched day, seemes so tired. I think the heat actually contributed to that. Yesterday was better. But your words were spot on. My husband and I have touched upon the subject but we are not there yet. We are hoping for the XL184 and that it works as it did in the case of Zimac's husband.
Posted 7/22/2013 6:28 PM (GMT 0)
Reading your posts has been so helpful for me while my husband continues to fight his prostate cancer. As we get closer to the end of the journey, I was happy to find this site to know how many are on the journey with us. Waiting for results from last scans for possible change in treatment. Still on Xtandi(since Dec) with rising PSA. Xgeva for bone mets. Moderate side effects, tired and some nausea. Xtandi was a 'miracle drug' in Dec when his urologist suggested hospice. We were thrilled with his fast response to xtandi and the extra time we have.
Posted 7/22/2013 10:38 PM (GMT 0)
Dreamer and nhwife, so happy to hear that the meds are working for your men.
I attended my first bereavement support group meeting today. Very difficult after only 2 weeks, but for several there it seemed just as difficult after 4 months. Very upsetting for me. What I've heard so many times, and repeated today, there is no time line, and there is no normal way to grieve. And so many individuals will tell you otherwise.
Rough night for me and I over slept and missed my upper GI test, rescheduled for 8/7...but still have my throat biopsy Thursday sometime. Appreciate prayers, it's going to be hard with out Jim by my side.
Posted 7/22/2013 10:48 PM (GMT 0)
LuAn and all the warrior ladies,
I am thinking about you. LuAn, I know this is so hard for you. I will definitely keep you in my prayers. My best.
Southern Comfort
Posted 7/23/2013 1:18 AM (GMT 0)
LuAn - the group experience had to have been really hard, yet probably a good step tp take. They are right, there is no timeline and it is in some ways like this journey we've been; so different for everyone - up and down, backward and forward, what works for one, doesnt for another, etc. thoughts and prayers for Thursday.

Dreamer44 - welcome.....I guess. There's another 10 pages under the same heading, it was continued here. It seems we had some similar paths with our husband. So glad he has had some better results then my husband did on Xtandi. This journey is certainly unpredictable and erratic.

He had to get more blood today, tomorrow is the oncologist and maybe his last chemo and/or treatment. Always dread it, and want to make sure I ask all the right questions, push when I need to, and ...... just all of it.
Posted 7/23/2013 2:50 AM (GMT 0)
Nhwife - hope first day went well. Studying the XL184 - I think that may be the study our Dr is a part of or at least it's in Cincinnati. One exclusion is that if mets in liver :-( - which just happened; but will be discussing with him. Haven't found much on possible se. Having lots of mixed emotions. Hope your husband did well today.
Posted 7/23/2013 10:19 AM (GMT 0)
Dreamer44, welcome to this group we all wish we didn't have to be a part of. The support and information on this Board are incredible and for me a life saver. You've been fighting this battle for a long time.
My first day was exhausting but exhilerating. So much to learn!
My husband did ok on his own. I packed a cooler of food and drinks for him. He had to manage the dogs, in and out and feeding, but did well. Fortunately we have senior citizen dogs!
Passages, we are hopeful about the XL184 but realistic. something may show up in the labs which would prohibit the treatment. We hope not!
Lots of mixed emotions here too. The days sometimes feel like a roller coaster: good, bad, worse, good, etc. I am aware I am away from him now a good 9 hours. But! Only 20 minutes away!
Thinking of everyone, all of you. Hoping for better days.
Jitters, very much in my thoughts. Just watching my brother and my mother deal with their losses showed how different grief can be. While books have been written on grieving, there is really no book. I hope you continue to seek out help and support and know what you are feeling is just right no matter what.
Posted 7/24/2013 4:06 AM (GMT 0)
Nhwife - glad first day went all right.

A rough day having to face reality. PSA increased quite a bit in a month - up to 545. Dr said basically time to stop. Actually gave us the option, but felt time to call in hospice. Today has been tough. Our daughter came over so he could share what was happening and the timeline. Talked with one son who is in Atlanta. So far lots of tears shed. The other two are coming over tomorrow. I think it feels a little like giving up, but I have been helped by Jitters and bjnemo thoughts. I don't think I'll ever be ready. Hospice coming to talk with us Thursday. Any words of wisdom, guidance would be appreciated. A yah rah - anything.

Exhaustion catching up with me. Girls to, tomorrow
Posted 7/24/2013 9:57 AM (GMT 0)
Ahhhhh Passages. We have travelled this road together, Jitters, bjnemo, Bud.
This is hard to read; but Jitters and bjnemo both have shared their experiences and this next phase can be peaceful, bittersweet. I guess grab the moments as they come, savor, treasure, and build your own inner strength. Step by step, you can face this. (Can you tell I am talking to myself?)
My thoughts are with you.
Posted 7/24/2013 1:39 PM (GMT 0)
Passages, please don't look at it as giving up in any way. He's fought a courageous battle. All heros need time to rest. Hospice was a god send. We were all amazed how much better Jim felt when all the treatment meds were stopped and he was just on the different meds that hospice started. The decadron (steriod) three times a day was a miracle drug that gave Jim back his appetite and energy, helping him to do the things he wanted to the last 2 months, so don't give up on Graduation plans just yet. Nausea went away completely. Pain increased maybe the first 2 weeks but with one increase of his pain patch it was under control until the last few days,but even then hospice had it under control.
Hospice social workers were so understanding and spoke to each and every family member together or apart,what ever we wanted, and to Jim.
In the beginning so many workers came I was very overwhelmed, and felt like we were being invaded, and finally asked them to slow down do I could breath. And don't forget to utilize the home house aide for his care and for your house care so you can take care of yourself, easier said than done I know so well. They are all so good as what they do. I am saddened that you are both at this part of the journey, but take all the time you can just to be with him. I am one that keeps busy cleaning and cooking to keep my mind busy, I regret not being able to slow down more and just set and hold his hand and sometimes not even talk. We did it a lot, every night in bed, he refused a hospital bed so I could be next to him, best decision we made. But sitting more together doing the day would have been nice, the only thing I would change in those last two weeks. Email privately, if I can be of ANY help..prayers for your family.
Posted 7/24/2013 1:47 PM (GMT 0)
With such raw feeling, I am again faced with 2 more losses. My very best friend lost her 36 year old son yesterday doing search and rescue. He fell while saving a hiker in MT Charleston outside of Las Vegas, you may have seen it on the national news. I am just devastated for their family.
My daughters next door neighbor, also a longtime friend and client of our business dropped dead at work of a heart attack, with his first grandchild due any day. I am so questioning why why why.
I want to go back to LV for services and support, but my biopsy is tomorrow and not sure dr would let me fly the very next day, and my own emotions are so raw, not sure I can be of any real support.
Quite a setback for me.
Posted 7/24/2013 2:59 PM (GMT 0)
Oh Passages, so, so sorry of hear of this news. I have looked forward to your posts and have prayed so often for the two of you. I hope and pray that things will improve and that you have all the time you need together. Once again, so sorry.

Jitters, you are already being a comfort. Love your words of advice, we all need to take them to heart. I am like you that I feel I need to stay busy all the time, so I will let those words seek in deep. So sorry for the two new losses. I am praying for you and your biopsy tomorrow. Thank you for coming back and helping those of us that are still here battling this part of the disease as you battle the part of the disease we are all dreading to face.
Posted 7/24/2013 5:52 PM (GMT 0)
Passages, yes, our paths have been similar. You are moving on to the next stop and hearing from others how comforting and loving this time can be for both of you.
Jitters, wonderful words of support for Passages and for us who know we will be there too, but not when. How sad to hear of your personal losses and understand you wanting to go to L V.
Nhwife, thank you for the welcome note.
Hubby's recent scans were very good, showing the xtandi has shrunk many of lymph tumors and eliminated bladder tumors. Bones not as good and PSA rising. For him, xtandi has been a success, and we pray it continues.
He is well enough that we plan to travel north for the rest of the summer (in Florida).
My thoughts and prayers have been for all of you since I started reading the Board in April.
Posted 7/25/2013 2:23 AM (GMT 0)
Thanks all. Dreamer44 and to Jitters for your input and words.

Jitters so much at once and so sudden losses - so hard to make sense at times or to even absorb. It is time to take care you.....thoughts on your biopsy.

I do have questions on lots of things that may have been missed, but don't really think anything would have changed the bottom line.

Our last two sons (the youngest and oldest) were here tonight. Enough separate that we got to tell them by themselves. They were rather stoic outwardly. My daughter and son yesterday went through some tears. My son-in-law really broke down today when he was picking up the kids. One more to tell on Saturday, the really special one, granddaughter Asia. She's has a break from West Point and will be home. The little ones were wondering briefly why my oldest was in with Papa and they were closed out and their dad and I were in the garage talking. The little one told us the was weird :-).

My husband looks terrible tonight. He didn't interact much after he was done telling them and is running a fever. He looks scary. He could hardly make it to bed. If we had started hospice, I could call them. If I called the Dr., they would say go to the ER. I don't know if he's over done it and is just spent. He did go in to work and told them to post the job, but he would try to get them through - software gov't security stuff that again I don't have a "need to know" :-). The boss he told - there are 3 owners - response was to ask him if he could pray over him. Mike thought it was cool. Certainly would probably have never happened in the service or at P&G or GE.

Jitters: he wants to stay in our bed for as long as possible too. So that worked ok? I've been trying to figure everything out. Thanks for input on hospice. I hope it all works out as well for us. I think I would be overwhelmed if that many people in and out. We're hoping for the bump up without chemo, but it's already been 2 weeks now and he seems worse. He did find out about a couple deaths in his family - an aunt and an uncle.

We have had a long run and I am so glad that some of you are having good luck with Xtandi/XL184/and other treatments. Keep fighting.
Posted 7/25/2013 5:08 AM (GMT 0)
Passages,

Somewhere in the thread (I've been away from the internet for several days) something was said about giving up. We don't do that. At worst we gracefullybut grudgingly accept the decisions of a higher power. Next spring, West Point it will be.

Jitters,

Do what you need to do to take care of yourself now. I have a group of (generally) non-PCa friends who are active participants in the "Boots" campaign. They stop and say a few words for anyone who "comes home" under a flag. Jim will be remembered Saturday morning.

Posted 7/25/2013 10:03 AM (GMT 0)
Passages, this might be the hardest part - telling family. but I don't know. I know when my husband told his sister and mother in Florida a month ago that we were on the final laps, they were wanting to come up immediately. Not yet. Thinking of you, hoping hospice is there now.

Jitters, your words are so precious to me. I held his hand last night a lot. I too like to keep busy and as I was fussing in the kitchen, your words resounded. Went right to him and sat with him, talked about our days. sorry for your other losses and do take care care of yourself. Hope all the tests give good results.

Dreamer44, glad xtandi is doing good! Travel sounds nice!

We have palliative care nurse coming tomorrow. I won't be here but my niece who is a brand new nurse will be there to help listen, ask questions, and take notes. The nurse will be talking about two other pain relievers and she will also assess his strengths and help troubleshoot how he can best do some things like fixing a sandwich for himself. The we have the Dana Farber appt on Monday with the promise of compatriq. I am loving my new job but feel guilty and sad that I am not home with him.
Posted 7/26/2013 2:33 PM (GMT 0)
Passages,
Being in our own bed was the best for us. He really didn't want a hospital bed. Our hospice nurse said to both of us after our daughter kept asking for hospital bed .." When your Dad asks for one or when he is no responsive, then and only then will we bring it in" She never asked again. At first I wanted one, afraid of allowing Jim to pass in OUR bed. He really was unresponsive 24 hours, but being in our bed allowed me to lay next to him anytime I wanted to, hold him anyway I wanted to, and talk to him anytime I wanted to. Looking back I would not change a thing. The last 15 minutes when his heart was racing and he was running a fever,I laid down next to him, covering him with part of my body, hand over his heart just telling him to relax, I was there for him, his daughters were there for me,just relax, instantly his heart slowed down, and we helped him pass his way, in our bed, so peaceful.
Had my biopsy yesterday, swollen and very sore today after a restless night. Doctor say he didn't see anything suspect but it did appear that I had trauma to my neck muscle at sometime. about a week for results and two day to do nothing but relax..gonna work on that one, maybe the pain pills will help.
Posted 7/26/2013 8:05 PM (GMT 0)
Sadly, member "keep calm" has joined the Emeritus list on our ladies auxiliary. Her post is here:

www.healingwell.com/community/default.aspx?f=35&m=2765566&g=2804563#m2804563
Posted 7/26/2013 8:44 PM (GMT 0)
Oh, how sad. And so shortly after her first post. I'm so sorry, Judy, that you had to face this, but am thankful you let us know how wonderful your husband was. I'm glad he didn't have to suffer long and that he knew you were there with him, as we are with you in spirit.
Posted 7/27/2013 3:05 AM (GMT 0)

Jitters99 said...
Passages,
Being in our own bed was the best for us. He really didn't want a hospital bed. Our hospice nurse said to both of us after our daughter kept asking for hospital bed .." When your Dad asks for one or when he is no responsive, then and only then will we bring it in" She never asked again. At first I wanted one, afraid of allowing Jim to pass in OUR bed. He really was unresponsive 24 hours, but being in our bed allowed me to lay next to him anytime I wanted to, hold him anyway I wanted to, and talk to him anytime I wanted to. Looking back I would not change a thing. The last 15 minutes when his heart was racing and he was running a fever,I laid down next to him, covering him with part of my body, hand over his heart just telling him to relax, I was there for him, his daughters were there for me,just relax, instantly his heart slowed down, and we helped him pass his way, in our bed, so peaceful.
Had my biopsy yesterday, swollen and very sore today after a restless night. Doctor say he didn't see anything suspect but it did appear that I had trauma to my neck muscle at sometime. about a week for results and two day to do nothing but relax..gonna work on that one, maybe the pain pills will help.

..amazing post.. ..real salt of the earth love..
...........Appleseed..............
Posted 7/27/2013 3:29 AM (GMT 0)
Thank you, thank you, thank you for your posts - this will be short after 2 days (positive) with hospice. Jitters your sharing means so much to me. Good reminder too. Think we may have similar daughters :-). I shared your post with my husband. I had shared previously about the balloon ride.

Nhwife - how'd the palliative care go?

Jitters - hope you're less sore.

Thanks Southern Comfort and 142. She's bringing her whites home so we can get a picture of them together with him in his blues. She hasn't been told about hospice yet, that's tomorrow. She is going to be shocked at how he looks. The boots thing is neat. We have fought the good fight, hoping he doesn't win the race too soon; but it will be a better place and I will be envious.

Take care.
Posted 7/27/2013 4:16 PM (GMT 0)
Passages, Glad to see your post, I was worried. The two of you are in my prayers, especially today. Glad things are going well with hospice.

Jitters, am glad to hear that the biopsy went well. Am praying for good results and also that you get some rest!

Keep Calm, so sorry to hear of your loss, you and your family are in my thoughts and prayers. I hope you keep us posted to how you are doing. Sounds like many will have much needed advice for those of us following your paths.

nhwife, hope things go well with palliative care. I didn't realize they come to your home. I will have to search this wonderful internet and see what I can learn about them. So glad you are enjoying the new job.

Hang in there ladies, we can do this! I have to remind myself of that quite often! My husband is doing good, but in so much joint, bone and/or muscle pain. Hasn't had a scan in almost a year, so not sure if it is from going off the prednisone, the Xtandi, arthritis, or new problems. Have a good weekend all!
Posted 7/28/2013 12:59 PM (GMT 0)
smo1, is there a reason no scan was done for a year? We learned early this year that scans need to be done fairly regularly - every 3-4 months, especially at the beginning of any new treatment. We too had not had a scan done for almost half a year.

Passages, glad things are settling down and that hospice is working out.

Jitters, hope all health issues are as easily resolved. Get better and stronger. Your words are always strong and welcome.

KeepCalm, continue to think of you and hope you are doing ok.

Palliative care nurse came on Friday. I was not there but my brandy new nurse niece was and she took incredible notes! Better than I ever did.

Increased morphine. Another appetite pill - zophran which has to be dissolved on the tongue. Not easy. Recommendation of a cook book - Cancer Survival's Cookbook. I have ordered it thru Amazon - looks great and deals with the issues of not wanting to eat, not able to eat, what to eat, etc.

Tomorrow, Dana Farber with the possibility of compatriq. Cross fingers. It will be a big day for my husband, tiring.

Some relief of pain but still needs assistance to walk. Very tired with the increase of morphine.

Very very aware of Jitter's words of stopping and taking time to enjoy each other. Not racing off to DO.

Best to everyone here. I hope for the best for everyone. I am always sad to see new folks come in but so glad they have found this board, it is so good.
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