Can anyone please direct me to recent OS stats when zytiga stops working?

[StephjoeSteph4197]

I can't seem to find anything specific for expectancy after zytiga. Husband is 52 and mcrpc since April.

[Dan59]

Zytiga quit working for me 4 years ago, I find it better to not follow mean statistics, they can be very misleading, as most of us do not really have an accurate understanding of Statistics.

I wish you the best

Dan

[StephjoeSteph4197 in reply to Dan59]

Dan,

Thank you for your reply. I know you are right. The fact that you have been off zytiga four years is actually encouraging. I wish you the best. Thank you again.

[Hidden]

I agree with Dan. Don't pay attention to statistics. We are all individuals and each case is different. Additionally, they move your focus to the future when you really have to focus on the here and now. The question shouldn't be "How long will I get out of Zytiga?" The question should be "Is Zytiga the right treatment for me at this time?"

[StephjoeSteph4197]

You are right, but I want to be prepared before the doctor tells us the OS on Tuesday. Not knowing OS approximately adds to my anxiety. My husband will want to ask the doc. I am grateful for the drugs that have helped prolong his life and so many others. . Thank you for your reply.

[Dan59 in reply to StephjoeSteph4197]

I only asked about my survival one time, and that was 11.5 years ago, they said I had a year to live, I never asked again. I think in this game where hope means so much, it is inhumane for a Dr. to pretend to know how long a patient has, please read article by Stephen Gould "The median is not the message" a brief lesson on cancer statistics. phoenix5.org/articles/Gould...

I wish you the best

Dan

[Hidden in reply to Dan59]

You are doing well for someone who has been dead for the last 10.5 years

[Neal-Snyder in reply to Hidden]

I've been dead for that long too, & I still enjoy life a lot! Good comment, Gregg!

Neal

[Dan59 in reply to Hidden]

Thanks Gregg, I plan on fighting for many more years.

Try to live every day!

Dan

[rococo in reply to Dan59]

Told one time but never asked. Was told 10% in 10 yrs. That was 18+ yrs ago. Just one opinion on stats.Never paid attention than, wouldn't now. Rocco

[Caring7]

As others have said, don't give the stats too much credit. And . . . remember, Zytiga is a new drug, so OS rates are only from clinical trials, at best, and they are not going to be deep (not more than 5 years I'm guessing). Our consulting oncologist at UCSF almost crumpled up the paper we had with the survival graph for something or other. He said - it's just so individual; don't get worked up about this.

I think the most important thing is figure out the right course of treatment for your husband. Thank goodness there are so many more options today than there were just 5 years ago.

Changes in status are always troubling. We are entering another one now (failing Xtandi) and we've done just about all of the new standard treatments except Zytiga. But it's been a good ride for most of the past 3-1/2 years, some side effect bumps here and there, but overall quality of life for hubby has been good.

Best wishes as you navigate this next turn.

Brenda

[StephjoeSteph4197]

Thank you.

[bb66hotflash]

Yes, the OS Table for Zytiga Is all over the place. You don't know if you will pass away at 20%, 50% or 90% point. I was on Xtandi for 32 months before I had to stop due to excess fatigue, too exhausted to get out of bed. That is considered to be a fairly long time, before having to seek alternative means. Plus my PSA started double every 3-4 weeks. I have been mcrPCa since Aug2012. Since July 2016, a biopsy, Foundation One genetic analysis,then tried Provenge, then a Class 1 trial with AZD-8186, then a re-challenge at half dose (liver damage), then Zytiga for eight weeks, helped one month, reversed next. Liver Mets now quite evident, Then radiation for Spinal collapse on spinal nerve roots (successful on spinal pain), followed by chemo w both docetaxel and carboplatin. Get 7th chemo round on next Tuesday, PSA been dropping by 40% each round, now 0.5. How much longer? Until side effects get me or PSA stops dropping or Mets regrow. The probable next steps, cabazitaxel and then whatever new treatment is available. Best guess at OS 6months min, 3 years max?. The person who knows, isn't telling me.

Now sure if your husband has had any prior treatment, The latest recommendations for someone just starting in your husbands condition is get Chemo first, then Zytiga. This is a recent change from three years ago.. See an Medical Oncologist if you haven't already. The current medical thought, is that Chemo will kill most of the cancer, and the Zytiga will control what is left for a longer period than vice versa.

Good Luck, Best wishes, and a long Life

[rococo in reply to bb66hotflash]

What courage and still giving advise too. Wish you the very best. Rocco

[StephjoeSteph4197 in reply to bb66hotflash]

Thank you. I was just rereading this and do not think I responded which I believe seemed rude of me. I am following you and hope you get some of your energy back.

[j-o-h-n]

to StephjoeSteph4197

A recent survey of North American males found 42% were overweight, 34% were critically obese and 8% ate the survey.

Good Luck and Good Health.

j-o-h-n Monday 09/25/2017 12:29 PM EST

[Terje]

I think you've been given good advise here. I just wanted to add that I think Zytiga is a wonderful drug. It worked for me for more than 4 years!

[Terje]

One more thing!

I was also diagnosed with PC at an "early" age (54) with Gleason 8 (3+5). I always wondered why I found myself in this situation at such a "young" age!

I later found out that I had a BRCA2 gene mutation which explained it. So when I hear of men discovering aggressive PC at a "young" age I always suggest they take a gene test to find out.

The "good news" is that if you have the BRCA mutation there are a couple of additional options available. My oncologist got me approved for Olaparib which is a PARP inhibitor. This took my PSA down and worked well for about 15 months.

I have since started with BAT (Bipolar Androgen Therapy) which now after 5 months have taken my PSA al the way down to 0.2. I also feel a lot better with more energy.

Kind regards

Terje

[StephjoeSteph4197 in reply to Terje]

Terje,

This is good information. I will ask the doctor about it for my husband tomorrow. I'm so glad you are feeling good. Thank you for writing. I appreciate it and I am feeling more hopeful.

[Terje in reply to StephjoeSteph4197]

Yes, it is a good idea to talk to his oncologist about this.

However, this is not an expensive test. Under no circumstance (in my opinion) should you have your doctor talk you out of it.

Information is power and in this case you really want to know as it potentially could influence future possibly life-saving / extending treatments.

Check this out:

color.com/product/hereditar...

or for BRCA1/2 only:

color.com/product/brca-gene...

[StephjoeSteph4197]

Nalakrats,

Your words are very encouraging. Thank you for writing me and your prayers. The PSA test is tomorrow. I will write an update. I am happy to know you are doing so well. Thank you again for reaching out.

[Terje]

Much appreciated!

[rococo]

Information with inpiration. We're lucky to have you here Nal. The best. Rocco

[Lunbo]

I was on Zytiga for 5 years with few issues, when stopped working went to Xtandi for a year and now on Erleada--not working either. But other drugs coming. Good luck!!