Caregivers

radsgrrl22....isolation is the worst for U...even though "he" is private....you need contact, if just to vent your grief, frustration, denial, any emotion is better than none.

My husband is not at the intolerable pain stage yet....I do not know for how long we will stay where we are....but I will grasp every day with a smile and hope that it will continue to be good days for awhile, anyway. I fear the future, that is not a good thing, for we should look forward to the future, but mine will be filled with grief, and I am afraid. My heart cry's out for jitters and for everyone else at that stage....I just want to hug each and every one of you.....there are so many of us now.....I fear that our numbers are growing......oh how I hate this disease and what it does to our men.....

Passages, your words are so filled with courage....

smo1, bjnemo, nhwife, Zimac keep us posted on your status......

Everyday is different for us as well. Today we are having a good day, hubby is eating, walking and has no pain. Wow! We are really grateful for these little things. He still coughs up blood from his lung mets but we try to deal with it and try not to be as frightened. I have all the emotions you ladies have, fear of the future, anger, sadness, loneliness, etc. but I try to focus on the here and now. Doesn't always work but I do try.
Nhwife I understand the angry moments as I have them too. Prostate cancer has turned everyone's world upside down and stripped us of so many things. How could we not be angry? I know it's wrong and not productive but these feelings do arise now and then.

At church today, I prayed my hardest for all us ladies dealing with this horrific situation. I hope he hears me. I'm trying.

I hate this disease too.

Stay strong!

Zimac

Passages,

A difficult day emotionally after reading about Jitters. Never can find the right words during a time like this.

Started off to be a good day but the heat was so oppressive, it just knocked the life out of Bob. Spent most of the day on the couch trying to muster up some energy. I like the extra nap in church! Glad he seems to be okay.

Just curious why you haven't tried some of the clinical trials out there?

Passages,

My husband is currently on Cometriq and his disease is certainly widespread. At present, he has it in the bone, lymph, lung and brain. They did remove it from the brain and with whole brain radiation his last MRI was clear. It seems to be helping him with his pain for sure. He went from terrible back pain and walking with a cane while taking Oxycodone every 4 hrs. to no pain, walking without a cane and not taking any pain medication for the past 6 weeks. My husband was extremely weak from the brain surgeries and it was still offered to us.
I am mentioning it because if it is a medication that could help your hubby out, I would feel terrible that I never mentioned it to you. Maybe something you could mention at your next visit. I know the appointments get overwhelming but forge ahead my friend.

Tomorrow must be a good day for us.......I insist.

I need to update my signature time line as it became very lengthy. I will try to make it more concise and post it shortly.

Zimac

Thanks zimac....as U can see, we have been battleing this disease since November 1999.
Husband has responded to all "treatments" rather well. As the folks said today at church. "he looks so good". I am so "blessed" that he does. ...but I remember tbat September 2011 appointmdnt when his bone scan was lite up like a Christmas tree, & fear took hold of us again.

Take care. I go to sleep with a heavy heart thinking of all of my comrades & their struggles.

I am updating my husband signature as well, I failed to add the Provenge treatments.

Zimac.....I think nuwife will be stating on Cometriq shortly......
Jjust checking on you...how's everything going?
Haven't heard much from anyone lately......

Tednsal,

Monday we saw the Oncologist to review all the scans. Cometriq/XL184 must be doing some good as Bob's scans showed improvement. There was tumor regression in the bones, lymph and lungs. The Oncologist said he expected pain relief for sure, but he was extremely happy with the scan results. Although we were told not to expect a PSA reduction with the medication, Bob's PSA went from 144 to 68. Although it's not as low as we'd like, we were quite happy with the number.

So overall a good report. Bob is feeling much better although he has minimal SE's. Appetite is fair but his weight is holding steady. Fatigue is there but he functions all day without a nap. No more cane to walk. He goes for physical therapy 3x/week.

He is building up strength to walk our daughter down the aisle in September. I know he can do it. He's fighting a tough fight but he's a tough guy. He's trying so hard after all he's been through.

Wish us luck!

Zimac

Sorry that you felt a little lonesome the last few days. I was just able to catch my breath from all the scans and doctors appointments. Our lives have become one doctors appointment after another. Every time we turn around, it's another one. Bob sees so many - Neurologist, Oncologist, Radiation Oncologist, Hematologist, Physiatrist, Podiatrist. It's never ending. Promise to check in more often.

You're always in my thoughts and prayers.

Zimac

It's not so much that we are having a lot of appts tho I guess we have but that we are in a holding pattern until next Monday when we meet with our Dana Farber onc and he is prepared to prescribe the comatriq.

We did meet with a pain specialist on Thursday - not so much help but recommendation for a procedure and a prescription for miacalcin for the bones. He has prescribed two puffs a day of the latter. We began it last night with a little trepidation with one puff. My husband reported a very slight difference this am in pain. Coincidence? Who knows but he'll do the prescribed two puffs tonight.

Yesterday was awful but I suppose it was horrid for everyone in the east coast where the heat was brutal. Today is a better day.

I begin my new job tomorrow so he'll be on his own during the day. I'm only 20 minutes away tho!

Thinking of everyone on this journey no one wanted. We are together in this battle so never feel alone.

Passages... I couldn't help but grin when I read "he had a longer nap than usual at church." :)

Still keeping all of you ladies in thoughts.

Dreamer44 - welcomed you on another thread. This site can be very helpful.

MsWW - made me smile that you noticed the "the longer nap then usual".

Sorry I haven't been on. I still have you all in my prayers and thoughts. Keep your faith and strength. We had two weeks of no pain. We had all our kids and grand kids here on 4th of July. We had Family pictures taken. A week ago he had his friends he grewup with over. We had a wonderful afternoon of playing guitar and singing. My Gene passed away on Sunday with family around him. Love, Hugs to you all. I'll be back