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Another Zimac update

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Prostate Cancer
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Posted 4/20/2013 10:44 PM (GMT 0)
It's been awhile since I have posted - been overwhelmed with everything. It's been 3 months since Bobs two craniotomies and 2 months since his whole brain radiation. A really long and hard journey.

Brain MRI scans this week - No new brain mets and eveything looks good post op. He will be rescanned in two months.

Bone scan and CAT scan -Mostly stable disease, some regression in areas and a slight progression in his lung. Oncologist was quite surprised there was no new organ involvement.Overall a good report since he has not been on any systemic treatment for his prostate cancer.

Leg DVT 's - Stable on the right leg, increase in size on the left. Physical therapy daily to try to reduce DVT's. He cannot be put on blood thinners (Lovenox) since this is what caused the brain bleed.

Cataracts - caused by being on steroids. He will have cataract surgery
in a few weeks. Vision currently 20/800 (he can't see very well at all).

Pain - pretty much pain free except some aches here and there.

We will be seeing his Oncologist soon to discuss further systemic treatment. Seems like from what I'm reading that Xtandi is not well tolerated. Am I correct?

It is amazing how much the human body can tolerate. My hearts breaks for everyone dealing with this horrid disease. As I have said many times, I hate this disease.

In our situation you take one moment at a time - for sure.

Zimac
Posted 4/20/2013 11:11 PM (GMT 0)
Oh Zimac. Soooo much to deal with. Craniotomies/brain radiation/DVT/cataracts/pain.......

But then no new brain mets, no new organ involvement and some regression. Thank God for that.

Hopefully the pain-free status will continue for some time

How is your husband holding up mentally? It must be very difficult to keep a good outlook.

Can't help you with the Xtandi...hopefully others will.

I am growing to hate this disease more and more each day.
Posted 4/20/2013 11:28 PM (GMT 0)
zimac,

thanks for the update on your husband, been wondering how he was doing.

david
Posted 4/20/2013 11:51 PM (GMT 0)
Thanks for the update. I have been thinking about you and Bob. My heart goes out to everyone dealing with the many presentations of this disease.
Posted 4/21/2013 10:09 AM (GMT 0)
Zimac, I have been thinking of you and your husband. It sounds like he is somewhat stable right now and I am so glad no pain. Enough going on there.

As to xtandi, I think everyone is different as seen on this board. My husband did not do well on it. We do blame it for the discomfort, the back problems, and the fatigue. What is not shared by the doctor is the potential spine compression se. Not that we would have done anything different; we had to try it. My feeling it (and zytiga) are such new drugs, they really don't know all se's or how these drugs treat. Now I am hearing about both drugs that there might be a sudden increase before an eventual decrease. We didn't see that with the xtandi. that's just our experience.

Learning how to take it a day at a time. Hugs to you. So glad you posted.
Posted 4/21/2013 1:30 PM (GMT 0)
Thanks for the update.
I'm encouraged by your earlier reports on the clinical trial Bob was in.
Hang in there.
Posted 4/21/2013 1:55 PM (GMT 0)
Nhwife - I wish I had some more time right now to post but Bob takes up most of my time. Right now he is very unsteady and has problems with balance because of the surgeries and DVT 's. I'm with him 24/7. When he's resting or sleeping my time is spent doing the things I need to get done.

I am a member on another site where lots of members seem to have a great deal of SE's on Xtandi. In case this will be our next option, I wanted to be prepared with as many questions as possible. Glad you mentioned the potential spine compression SE. I will certainly ask about that.

Have you considered Provenge?

Littlenm - How is he holding up mentally? Since he had the craniotomies, he was definitely depressed. Not the same Bob I knew for the past 45 years. He has been always been the funny guy, life of the party type but now he doesn't speak much or smile.
Although, since his brain disease is stable for now, he seemed to get a spring back in his step - talking more, joking and actually smiling again.
This is a road I wouldn't wish on my worst enemy. We continue to fight as true warriors and will never give up hope. So, we will be on to the next journey shortly.

Zimac
Posted 4/21/2013 4:03 PM (GMT 0)
Hugs to you and Bob ((())) When you hear people say that if you have to have cancer that prostate is the one to have I could just flatten them! It's a terrible monster :(
Posted 4/21/2013 7:17 PM (GMT 0)
Prayers for both you and your husband.  God bless you!
Posted 4/22/2013 12:41 AM (GMT 0)
Silverlace,

I agree, but you hear it all the time. If I had a choice, it certainly wouldn't be cancer at all.

Wishing you the best.

Zimac
Posted 4/22/2013 12:53 AM (GMT 0)
Chris,
You and Bob remain in my thoughts and prayers.
Thought about you guys this weekend, as I was really hoping to be able to meet you.
Posted 4/22/2013 4:02 AM (GMT 0)
Chris, I have been waiting and waiting and concerned with not hearing from you. Part of it sounds very positive as far as spread, pain, etc. and the other not so great. Hopefully you are getting you time. I don't know if you have any Palliative care business available for you; but if you do, it might be good to look into. If he's on Medicare, it pays for it, from the spiel I heard at the Cancer/Wellness center here.

Our experience with Xtandi was a difficult one, but again, everyone is different......and who knows what is what. I definitely lost the guy I've been with for 45 years too - almost 46. He's been so discouraged and so fatigued. Always has joked, even through the worse times, until now. Pain is not terrible yet, but it was finally enough that he took something for it.

He dreaded going back on the Taxotere, even if lighter dose; but seems to have a little more energy - went to church and later after a nap; he wanted to take the dogs for a walk......very short and slow. In some ways that made him feel more discouraged, even though it was nice to get out. Sure more than he's done in awhile, though back down for rest of the evening. He didn't get the Neulasta afterwards, not sure why. He also seems to be getting appetite back. We didn't get the big bump up with the PSA and than back down with Xtandi, it just kept going up.

Trying to take it a day at a time. For you it's more hour by hour. Take care. So glad scans weren't so bad. Update us when you can.
Posted 4/24/2013 2:02 AM (GMT 0)
Passages,
Thanks for your concern. We have an appointment with the Oncologist coming up next week so we will have a better idea where we are going. Our situation is so difference since Bob had two craniotomies. He needs to recover fully, I believe, before something else is given to him. It's scary not being on anything for his systemic disease but we have no choice.

I will you posted next week.

Love to you and yours.

Zimac
Posted 4/24/2013 2:44 AM (GMT 0)
Yes, his is different. I remember when you were headed to ER. Seems so long ago. It would be very unsettling not to be doing anything, especially how this disease seems to move....yet maybe it's better in the long run. We all don't seem to be having much success with treatments.

Thoughts and please keeps us up. Somehow find time for you - just a had to be repetitive. Not sure how I could either.
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