Xtandi side effects, results, etc (continued)

Please keep in touch jitters.

Thank you everyone for your love and kind words. Each day I feel a little stronger for longer periods of the day. Tomorrow I go to the mortuary to take care of things. Jim didn't want a service here or in Vegas, he felt the Celebration of Life in Vegas was enough. I am respecting his wishes, but our friends here in CT have suggested we have a Celebration here when I feel up to it, just a small backyard BBQ and toast a beer to one great human being. I am just over whelmed at the many lives he has touched here in the 4 short years we have lived in CT. He was just that special person that made a friend a the dump, the coffee shop, every where he went they loved him.
I am taking small steps forward, crying a little less, and thanking him for being the great husband, dad and grandfather he was. I know he is hearing me and asking me to take care of myself. I have more doctor apps this week for my throat and fully intend to find out what is going on and dealing with it all ASAP. I will keep in touch..

jitters99...I pulled up your profile and sent you a e-mail.......proud of you and feel confident that your strong will and Jim's will help you come out of this valley....and you will see the sun rise and set again and smile, knowing that Jim is seeing it along side of you!.....

Dear Jitters, The news of Jim's passing has affected many who have followed you and Jim on this journey. I have read the messages and feel the sadness. Through it all, you have been there to support us all. Your prayers, the knowledge you pass on to other, your words of support, have helped so many. Know that all of the wonderful people on HW that have helped you, are with you now.

Love, Prayers and Hugs Barb

Jitters, made me smile on a rough day, no bad news, just feeling it a little more.

Delusional, maybe; but hopeful and seeing the eventuality - yes. The ups and downs of the "firsts" of birthdays, holidays, special times and places are the hardest of the first year. Even coming back to an empty house that's not changing from empty.

Having said that, hope and attitude is what will help get you through. People who care and understand and hang in there will help get you through. You and your daughter's attitude will help get you through. Besides there has been some elements of mourning the various losses that were continually happening during this disease process. You have Ellie and your family to get you through. YOU will make it........and you keep us updated on what's next on the health travels for you.

Take care - special hugs for your daughter, you, and Ellie.

Welcome See Land,
Our journies have not always been easy, but we mainlyhave survived. Did you find the original thread to this one? This one had to be restarted or continued on a new thread because of the many pages.

We will be here for your journey too. We have another women warrior who is traveling down this path a 2nd time. I can't imagine it for either you

Take care.

Jim's ashes and flag came home today, it was very difficult. I've posted a picture of his urn, something I was sure I didn't think I wanted, but when I seen a horse sculpture, it was a reflection of the true cowboy I was married to. It's call Headed back Home and I love it. Right now am feeling a lot of love and comforting thoughts from family and friends, receiving beautiful flowers cards and plants, but I am also feeling stuck, not able to get on with daily chores, like just cleaning the house, don't care if its done or not. Afraid that if I start I won't stop and I will get really angry, maybe out of control is the word. Just very sad tonight, praying for a better day tomorrow.Looking for a support group next week.

LuAn,
Day at a time. There are stages of grief, a group might be great support to help you through them.
I will keep thinking of you and hoping we can be in touch.
I have not been through what you are going through, only have my brother and mother as models. And they handle their grief so differently!
But I do know how important it is for that support to continue for you beyond today or this week. Please shout out to us. We can take it.
Sea Land, welcome to this little corner of the world and I do hope the best for you and your husband. The support and information is great at HW.
Beejane, thanks for stopping in - your words are so important.
Passages - always thinking of you.

My update: we met with the palliative care nurse on Thursday. As my husband says, we see a little light at the end of the tunnel. She has some strong recommendations for pain meds and will make those to our doctor who we see on Monday. So hopefully on Monday he will begin a new regimen of pain maintenance that will WORK.
Yesterday was awful - he dosed thru a large part of the day and seemed more out of it than usual. I'm hoping this was the reaction to a pretty tiring day before.

Hoping for a better day for us all!

Constantly in our thoughts, LuAn and all. Love to see obituary. Each of those steps though are also reminders how real it is. Thoughts with you all.

LuAn, I think the obituary did him justice. He sounded like a wonderful guy, which we all knew already.
You are healing and getting stronger every day. There is no measure for this - you make your own path.

I want to keep this thread going and available for those of us who need it.
Jitters, hoping you are doing well and forging ahead but I know you are grieving. I hope that is with support.
Passages, Zimac, tednsal, See Land, everyone, thinking of us all.
We are making some progress, I guess. Dana Farber is going to prescribe the XL184 so we are hoping for the same outcome Zimac's husband has had. It is nice to have something to hold onto.
Otherwise it would be so dark.
Zimac reminded me: Hugs to everyone!

tednsal, yes the cometriq. As in Zimac's husband's case, my husband will receive a much much lower dosage than what is given for the thyroid medication. Zimac's husband has had no if few se's because of that.
This is definitely something new, showing great promise. It is still in trial or registration trial so using it apart from all that is definitely front line. Our local regular oncologist will NOT prescribe it. She doesn't know anything about it and it isn't FDA approved for PCa.
Zimac's husband is getting it from Sloan Kettering, mine from Dana Farber.
We think he'll be starting it in about a week!

So good to hear from everyone. I am doing much better for today. Moving a little forward wishing I had more motivation, but I know that will come. Starting Monday I have tests scheduled for reflux issues and then on Thursday my open neck biopsy, could use a few prayers on that one. I have a good feeling that the results will be good and both the doctor's and my own concern can be put to rest.
Nhwife..XL184, praying it works for hubby. That was just way to complicated of a trial for Jim to deal with. Our doctor had a lot of confidence in it and wished Jim would try it, but Jim was done.
This statement may be way out of line here, and I am in no way suggesting this is for anyone.
For Jim and I, at the stage he was at with his very very advanced cancer, when he decided he was done with treatment, it was, for him, the best decision, and I just supported it. The middle of April to the end of June were the best months of his 2 1/2 year journey with PC. No decisions to make, and the best he felt, no nausea, eating whatever he wanted, all pain under control, and just enjoying his family friends and life in CT. I really feel the each and every PC patient will know when to make that decision. We are so blessed with all that has happened in the medical world to fight PC, so many new drugs have become available.
Jim was just one of the unlucky ones that got the very aggressive disease, and we were told that from the beginning. That his fight would be difficult and shorter than the majority, as it was. Always praying for better results and comfort for everyone. LuAn