Caregivers

Thank you all. All of your words mean a lot.
I am just beginning this new journey and already so many people, here and in other places, have expressed their sorrow.
My neighbors who were for the most part just neighbors are really stepping in with food and other help so I am feeling taken care of.
Day at a time right now.
But for Ed, I will be OK.

nhwife- so, so sorry for your loss. I am so glad his mom, sister, and your sister were able to make it for a f visit last week. You are in my prayers as you begin this new chapter in your life. Hugs to you today!

Dear Susan,

Please accept my sincere condolences. I wish you happy memories and peace in the coming days.

Kathy

Hi, enjoylife. Welcome although unfortunately your being here means your hubby has PC and from your signature, somewhat advanced. If you check out my signature you can see my hubby, Mark, has had similar treatment, although it's been a longer journey. Hope HW PC helps you through the rough spots. Everyone is so supportive. When I read the specific posts about the treatments, stages, suggestions for newly diagnosed, etc, I'm amazed at the amount of medical information that non-medical professionals have accumulated and share. Hope you find Xtandi beneficial and have a long run with it.

Pat

Hi Dreamer (Pat) , Tednsal,

Very kind of you to welcome new people to the forum. I am very glad I joined because the resources and support are something I need at this time. Often thought I could do this myself, but lately it’s tough as all of you know. My husband was diagnosed at stage 4 PC with bone mets in 2005. Tumors in his spine caused spinal cord compression and he became paralyzed until the surgery. Hardware failed, so had another surgery the following year and is walking with aid. Amazing how he has been in and out of rehab and treatments. Strong man and still here in 2013. There are so many out there that need support, I hope they find this wonderful forum that is so full of information for all.

Thanks,
Cathy

nhwife, thank you for your insight and words of encouragement. You have been through so much, especially this past week, my condolences and prayers are with you. I have learned that every man’s PC is different, on what works for them and what does not. One day at a time.

Thanks, and hugs to all.

Enjoylife,

As everyone has already said, this is the place to be for knowledge, love and support. Great group of guys and gals here to listen and comfort when you need it the most.

I haven't been on the forum much because my husband and I are trying to get our lives in some sort of order after a horrific year with this ugly PCa beast. We are trying to cherish every moment we have together. I encourage you to do the same. Remember to take care of yourself as well, something we caregivers often forget.

Wishing you all good things.

Passages/Nhwife - so glad you're here. Thanks so much for all your support. You are my heroes.

Zimac

Tednsal, hope your news today is better than ours. One month on zytiga after rising PSA while on xtandi... New PSA is 280 from 150, almost doubled in 4 weeks. Not much left in the pipeline. Mark feels unbelievably well, and I think thats because he has had a super positive attitude throughout his journey. He has had good pain control using oxycodone. He wants to finish his month supply of zytiga but realizes his next PSA could be over 500 . Trying to focus on how he feels rather than the number. Scans in August were good, some lesions smaller and nothing new. The PSA tells us its growing somehere, time will tell where.

Dreamer,

There are lots of clinical trials out there to try. My husband has been on two and did very well. The way I look at it, it gave him an extra 2 years If Mark is feeling great, I'd give it a shot. Clinical trials aren't for everyone but I'm a big advocate of them.
What about Cometriq? Maybe that is worth a try.

Glad the scans look good. Our Onc. says, there are three things to look at - first, how the patient feels, second, the scans and lastly the PSA. So based on that info, if Mark feels good and his scans are stable regardless of the rising PSA, I'd think that is a win, win situation. We all seem to focus so much on that PSA number. I try not to but it's so hard.

Enjoy each moment together.

Zimac

Hi radsggrl 22 , sorry to hear Bob is having more problems, especially pain from bone mets. Mark gets by with oxycontin, codone, but some have reported success with radiation to bone area. There is a new radioactive injection that has helped a few. I'm not very technical on the drug names, just have basic understanding. Hope others can jump in and expand on what nay help. Cannot see signature line so don't know what has been tried.
Pat

Hello fellow warriors...I think some of you all are a little week in the knees by reading what has been happening in your "world" lately.
Husband's (Ted) CT scan came back as "stable" (whatever that means)....however the cyst in the left kidney is worrisome and oncologist want's husband to go back to the urologist. I don't know what for, husband isn't going to do anything about it. He's tired of doctor appointments, tests and waiting on the results, medicines...pills all day long, not having enough energy to even get out of the recliner, loss of appetite, incontinence, this constant "cancer" cloud over his head. Didn't get the PSA results back, guess they are afraid to call us with them, I expect it to be high......but what we don't know, helps with keeping the spirit up. Husband not sleeping very well, doctor prescribed Ambien (great he said, another pill). Xgeva injection really got his bones to aching, so sleeping has not been good, up and down.....doctor says that is another thing that is causing his fatigue. He doesn't get into that "sleep zone" where your body actually rests.....therefore the sleeping pills. We will see.....I had a hard day yesterday......realization keeps hitting me in the face.......
Dreamer44 (Pat & Mark) and Radsgrrl22 (Susan & Bob), I understand how you all are feeling.....all I can say....is "be strong".......for your partner.......
nhwife (Susan)....I sent you a e-mail a couple of days ago, felt like writing directly to you.
Passages (Jane)......I watched the whole slide show...wonderful...beautiful memories. My husband was active with our sons with the BSA, we have an Eagle Scout, I was his ole Den Mother....Husband also hiked and backpacked a lot (pre-cancer), and he reads a lot about the Civil War & argues with me about "them ther Yankees", since I'm from the north. They had a lot in common. Tell your son, he did well!
enjoylife (Cathy), how are things with you........
Zimac....??????? same question.......

All, I see Mike DeA set up a new thread, Caregivers Corner. I'll continue to check both because the posts from the Warrior Women are so personal and helpful. For some of us the road may end shortly, just don't know what that means.
Passages, I could not watch the whole clip that you posted on the old Xtandi thread, tears just streaming down my face, feel like you and Mike are friends. Thank you so much for sharing and I'll get through the entire video. I know some of the tears are for me, but some for you too.
Going back to Caregivers corner/old Xtandi to read the last 2 posts. Maybe the caregivers could decide which one to keep going for our personal notes.
Pat