Does anyone ever stabilize after high CTC?

I am surprised to find myself writing this, because I've read so many "am I sunk?" posts over the years, and read (and offered) so many "never give up, there's hope, look at Todd for god's sake" type answers. But even in the darkest days right after my husband's diagnosis, I still felt optimistic, I knew there were examples of G9s going into remission, etc.

But this feels different. I got bad circulating tumor cell results today. There wasn't really discussion -- I was given a printout, and was told I should read it later, it'd give me some insight into what this means for his prognosis (not our doctor's fault, so I'm not crabbing about the delivery -- they have their reasons). That print out talks about differences in prognosis if you have a result under 5, or 5+. We are nowhere near 5 unfortunately. I've googled a little, and only found articles that break results at under vs. over 5, or in a few cases, under vs. over lower numbers.

I know we're not winning this battle, I've known that for a long time. I've just been hoping to drag out the fight. In a way that allows enough quality of life that you're glad to live to fight another day.

So with a really ugly CTC result, is it still worth "fighting" or at this point do you strictly focus on minimizing suffering?

At the same time, they said they want to switch from taxotere to mitazantrone. I read Beth's very encouraging post about Gary's surprise success with mitazantrone, but other stuff I read made me wonder what it means that they want to make this switch. Is mitazantrone usually used because it may work when taxotere has failed, or is it more of a thing you do when you don't want to put someone through harsher chemo anymore? (The way they put it made it sound like the upside was that mitazantrone is paired with steroids, and those would make him feel better.)

Sorry, I feel like I'm can't really express my question. I guess I'm just hoping someone who knows what it all means will help me understand what's going on.

Thanks TA. I knew it was not under control, but being so far above the break they use to predict lousy prognosis scared me.

I found a chart online that plotted outcome by CTC and it at least made me not worry so much about his exact number. It isn't a linear relationship (unfortunately for the wrong reasons -- the decrease in average survival time as CTC climbs has to level off once you get so low).

I don't know why they are thinking mitazantrone instead of jevtana. I hadn't heard of mitazantrone, so I didn't ask why not jevtana -- I thought I had a promising new breakthrough to go research. That's sort of why I posted. When I read that mitazantrone is usually less effective than taxotere and jevtana, it made me wonder if it's a reco because "this might work and is a better fit for him for reasons x, y and z," or if it was more of a "there's no hope so let's not put him through jevtana."

It's hard for me to get answers because I'm not the patient. I called myself infohound for a reason -- I like to learn what I'm up against and come up with a plan. Since his diagnosis, which shook him to the core, my husband is more of "don't ask don't tell" kind of guy. I think his doctors look at this frightened, fragile guy and decide to go the vague route. And apparently they can't tell me what he doesn't want to know (they can show me lab results and scan reports but interpreting those? That's me and google. And HW!)

I'll try again on Monday but in the meantime, this gives me a little more clarity and less stress about this.

thank you for responding -- I really appreciate it!

I see zytiga in the sig line, but not xtandi. Has he had that tx?
Sending positive thoughts an prayers to you today to help you through the weekend.
Beth

We haven't done xtandi. I'll ask about that.

I am at his appointments, but they are very low on information. I think our doctors see his emotional style (for example, he sometimes cries), and are very vague. For example -- Friday's scary CTC results were not mentioned during the appointment, but afterwards, when he fell asleep during chemo, a nurse handed me the lab report. I've stopped asking the hard questions, because I've come around to agreeing with him that he's better off not knowing all the details. He wasn't a depressed person before cancer, but he's depressed and has a lot of anxiety now. I think it probably improves his odds to keep some hope, and if he knew everything, hope might be impossible for him. I just wish I could meet with his doctors privately but that seems to not be an option.

Thanks again for your help. I'll definitely see if xtandi is an option. I'd say I'd check into the therapist idea, but I already push that (unsuccessfully). It seems he knows that would undermine his fervent attempts at denial!

When I used to work for Six Flags I always volunteered to be the live crash test dummy. That is, the first human to ride the coasters after the crash test dummies. I noticed that there were two types on the rides - the ones (like me) who kept their eyes open and screamed at the top of their lungs, and the ones who shut their eyes and held it all in. The people like me were exhilarated by the end of the ride, the ones who shut their eyes were shaken (and sometimes threw up). The reason that the closed-eyed ones were so shaken was because what they imagine is so much worse than what is really there, moment to moment.

We know where this ride ends, and it is not happy, of course. Our rides all end there, but it is going along for the ride, not the end of it, that matters. In my own experience, dealing with it as it is, eyes open, causes a lot less anxiety. It's certainly OK to scream, and release all that is building up inside. I hope he can find a way to live in the moment instead of the darkness in his head. I know I'm preaching to the choir here. It sounds like you are setting a good example for him.

Hi Infohound, you asked in your original post about dragging out the fight. This reminds me of a story (video) I saw, of Dr.Casscells, who died of PC some years ago His doctor, Dr.Logothetis was also interviewed and he kept sayng that they kept bringing Dr.Casscells back from the brink of death, over and over. Even when all their colleagues were saying to just let the man die, as he was yellow and all bones, they kept discovering new medication that worked for Dr.Casscells. He survived 10 years with metastatic PC. So, to answer your question, yes, the fight can be dragged out, and you are holding the flag in this battle. Your hubby is very lucky.