Xtandi side effects, results, etc (continued)

Just having one of those very sad days, while I think about my own loss and my friends and family laying our other loved Hero to rest. Las Vegas had come together to support our beloved David Vanbuskirk, Search and Rescue at Metro. You can google him, so much on the news and how they are coming together to help his family. I am so proud of him, but no upset that I am not able to with my friends in their time of need. My feeling are so raw I would of never made it through any service let alone the thousands they plan on attending this one. So happy that I do get my private personal email updates and phone calls, can't imagine going through this without them. Praying for support for my daughter in Vegas who is attending on our behalf, her emotions are also so raw, and yet another funeral to attend on Wednesday, pray that she finds support from her friends.

My daughter said me to tonight, this cancer journey was an every day adjusment of our expectations. Remember when your scariest moment was when the doctor used the word impotence, and you were like ok I can adjust to that, then the words radiation, oh and I prepared what I expected to be the worse treatment, creams, powder etc for skin burns, another adjustment, just fatigue. Oh next it was chemo, another adjustment...then the next another adjustment of our expectations....that's what cancer became to us
AN ADJUSTMENT TO OUR EXPECTATIONS. Where did she gain this wisdom at 41 years, maybe thru adjustments..

Thinking of all of you tonight. Best wishes!
Southern Comfort

Adjustment to expectations - I think that's a very apt way to describe what we are going through.
Jitters, so sorry for these sad days. Just know I continue to hold you in my thoughts.
Southern Comfort, really appreciate your words and keeping an eye on us ladies!
Passages, your life is so busy! I hope things settle down with the promise of more serenity. Tho I am sure we don't really know what that means.

Update: long day at Dana Farber yesterday. Always is. But the doctor prescribed the compatriq. He faxed the order to Diplomat Pharmacy. Now we wait. If there is any problem with the prescription itself, Dana Farber will handle it. If there is a problem with the insurance, we'll have to handle it.

The doctor also prescribed a blood transfusion as red blood cell count is way down. He thinks this will help some with the fatigue.So that should happen this week.

He is working with our local doctor so blood test and first visit will happen with her in 4 weeks. Then he wants to see him in 6 weeks or so.

The doctor was all business yesterday. There was no sense of hope from him. We have to have faith he wouldn't prescribe this unless he felt it was appropriate.

We are crossing fingers right now, that we actually get this medication! Then that it gives him the same relief that Zimac's husband received.

Adjustment to expectations, indeed.

Best thoughts to everyone. I will update.

Nhwife...good news on the medication..

Just a bump and to let you know that hospice has been extremely helpful. We are hanging in there. He went in to work for 21/2 hours yesterday. Paying for it. Remembering when someone complained when they left, hubby would mow or something and would really pay for it.

How are you all doing?

Update...my neck mass came back as benign, my prayers have been answered. Now to deal with what could be or maybe not acid reflux. No heartburn just burning in my throat. Prilosec helps with liquid carafate 3-4 times a day. Doing upper GI next week for reflux, but dr doesn't think it's REALLY reflux, and I don't either. I had lapband surgery almost 5 yrs ago, and have issues with food getting stuck and vomiting, them with the added stress the last 2 yrs taking care of husband it just got worse, so will do endoscopy end of August..then I am thinking I have fulfilled my promise to Jim to take of my health issues and myself. Blood pressure has even been under control lately. By Sept. I think my health issues will be resolved and I can truely move forward with a clear head. My sister is coming to visit here in CT from Ca. She has moderate Parkinson's and it was very difficult to take care of Jim and her when she came to visit, so our visits over the last year or so have been really limited. So looking forward to spoiling her for awhile, having some good memories and cries about losing Jim, then taking her for 3 days with my granddaughter and her friend to Cape Cod for some R&R, good food, maybe I can even put on a few lbs, and some shopping. Hope everyone will have a great weekend coming up.
God bless everyone of you with your journey and remember to make adjustments for your expectations, leaving you with fewer disappointments. LuAn

So sweet 142. May 28th. That's the part tearing him up .... and my daughter and granddaughter. I think granddaughter will be ok after she goes back (i hope) at least for awhile and until graduation. She has always been able to compartmentalize from when we sent her on a airplane at 5 to visit her dad - cant believe we survived doing it. We didn't even know if he would send her back or we'd have to go get her. After that she flew to Maine with grandparents and sometimes he would show up. The other set would meet us half way.

I don't think he'll go to work much anymore. He's posted the job and will try to help with that, if he can. Not sure if all the emotional turmoil of telling kids and Asia, and/or realizing and giving up the things he loves or if it's the body failing; but he has gotten quickly feeble. No bump yet from no chemo. I've been living with the many "what's next" and adjusted mostly. It's not easy for someone coming from the mathematical and organized type family, but I do have or learned to have a bit of the "go with the flow" and walk by faith mentality too.

I have been reading the latest posts from you all and have a heavy heart, a lump in my throat, and tears running down my face.

Jitters899...so good to know that you are doing what Jim wanted and that you are getting a better bill of health....you are the one left to take care of :stuff" and you are part of the "stuff"...like it or not. Even though our loved one has left us, we still have a battle, of what to do with our time because it was always so consumed with taking care of him (lovingly, of course). As I read your post about laying with him your hand over his heart, I came apart, for that is what I feel I will do when the time comes. Wanting peace for him and have my love flow over him as he leaves me. Cry as you will, but carry on...you still are a Warrior!

Passages....I am reading between the lines and seeing that times are getting harder....the disease is taking it's toll on you and husband and of course all of the family members. Hospice will be so beneficial for you both (or all). They are so comforting. He was still trying to work, bless him...not a quitter. It was my husband who cut the grass when I was at work....and yes he did pay for it....

nhwife...hope the transfusions go well and will give him some strength as well as the new medication. That's all I can say...Hope for you and husband....

Adjustment to our Expectations...my expectations change after every doctor's visit....hope is there until his words are heard, test results reveled, different treatments, etc.

My husband has been extremely fatigued the last several days. Sleeping most of the time. His medications are still the same. Doctor did suggest to take and additional Adderall in the mid morning to help with the afternoon fatigue and another Lortab for night, instead of the Aleve. I stopped his mufti-vitamin, due to what all I have been reading about how they possibly "feed" the cancer. He is becoming very "stiff" not able to bend down very well, and of course steps are becoming a problem. CT will be scheduled for early part of September. Still on the Xtandi, but PSA is starting to rise....you can see that in the signature. That's a worry!

My fellow "warriors" (Zimac, smo1, Dreamer44, Southern Comfort, Bjnemo) and all of you who I have not named///please send hugs, prayers, well wishes and good thoughts this way, for we all are going down paths we wish we didn't have to journey through....

I will go to my bed now and lay my head next to my husband and lay my hand on him once more and hope to do that same thing for many more days.......I will also close my eyes and think of all of you and wish you peace, love, mercy, hope and sleep.....for a new day will dawn.....

Here is a new treatment that is in clinical trails in UK...http://news.gnom.es/pr/viralytics-advances-cavatak-clinical-programs-in-late-stage-melanoma-prostate-breast-and-colorectal-cancers

To all the warrior ladies, I am praying for a good weekend. There are so many having such a hard time here. On our last visit to the oncologist, he told my husband he thought my husband's pain was from arthritis, not the Xtandi and now I am wondering if it could be a combo of the Xtandi and also going off the Prednisone? Any thoughts? My husband said next visit he is going to ask the doctor for something for the arthritis.
We went to our county fair the other day and he was in so much pain, we stayed about 1/2 the time we normally would have stayed and came home to rest. I can see it is getting harder and harder for him to move. So sad to watch. He hasn't reached the exhaustion all the time stage, but it looks like it is coming sooner rather than later. With his PSA numbers so low, the doctor doesn't seem to think he needs any scans, which is also upsetting to me. Asked hubby if he wanted to try a new doctor, but he doesn't, so I will continue to support him in his decision. Wondering if the side effects from the medicine are really worth it. He looks great, has a great appetite, but what is happening inside is sad!
I pray for strength for all of us. It is wonderful to read the good news that Jitter's biopsy came back negative. Maybe it is all the stress you have been through.
nhwife, how is the new medication going?
Passages, such a hard journey. Am so happy to see your consistent posts. I always look forward to seeing how you are doing.
Hope everyone has a great day.

Always good to get updates from everyone.
It is day 4 for the cometriq. Hard to know but there is some change towards the better. He "forgets" to take the oxycodone! Tho he did take a morning dose, he really has not been taking it. Still the morphine. He says less pain on the left side. So incremental - we'll take it.
The transfusion did not have a remarkable effect but I think it has helped some with energy and attitude. We sat out on the porch this morning, enjoying the air and breeze. We hadn't done that for a long time.
He is not dancing a jig but I think it's going in the right direction.
Interesting about the steroid - we are weaning him off of it. We had done so a while ago and his back pain reared up again so he went on it again. But I'm not sure it really helped. Anyway, he's going off it again.
Our neighbor from across the street came over when I was unloading the car of groceries. He had seen us, with him barely walking with cane a week ago. I told him what was happening and he promised to keep a better eye out for us if we needed anything. Nice.
Enjoying the day today - hope everyone is too!

Passages, so sorry Mike is not looking good. Hope the fluids go down. Hope and pray he has some good days soon.
Nhwife, glad you are seeing some improvement. The whole steroid thing seems a mystery to me. I think our next appointment is on the 20th, so will be interesting to see what the oncologist has to say. He spends so little time with us and never seems too concerned about how my husband really feels.
It has been a wonderful Sunday. We got to church and have had a rest filled afternoon, so that is nice! Hope and pray everyone has a great week.