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Worried about Dad, life expectancy for castrate resistant prostate cancer and starting chemo

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Posted 5/7/2018 8:28 PM (GMT 0)
Hi everyone, I don't know if some of you remember me, I posted back in 2009 a great deal when my dad was initially diagnosed with prostate cancer. I have posted throughout, but it appears there are a lot of new members here. May God Bless you all. Since my dad's T3b diagnosis he has had radiation (went to Dattoli center in Florida and Dr. Myers), Lupron, Leukine, Zytiga, Firmagon, Xtandi, Provenge, Radium 223, and probably every treatment available to him except for Chemo and was doing well on hormone therapy but now his cancer has stopped responding and his psa jumped from 4.3 to 19 in two months. He has a significant number of bone mets in his spine and now he is doing palliative radiation to his neck because of neck pain. The next step is chemo and I can't imagine it being his only treatment left. How long
(I know only God has this answer) but statistically speaking does my dad have? I feel we are lost in the woods and there is no hope in sight. Is their anything available after chemo? Please chime in, thank you so much!
Posted 5/7/2018 8:52 PM (GMT 0)
So sorry to hear that the HT has stopped working and about the bone mets. That's not good.

Hopefully the radiation will bring some pain relief.

He's had a lot of treatments and chemo sounds like the next step. It's difficult to see him go through so many treatments and watch them fail in time. There might be some clinical trials, but that's a real long shot. As for time, I won't speculate.

Peace,
Andrew
Posted 5/7/2018 11:37 PM (GMT 0)
Our knowledge has improved a lot since 2009. Chemo would probably be his first step nowadays. Is he interested in clinical trials?
Posted 5/8/2018 12:09 AM (GMT 0)
As far as I understand if you do chemo you are not eligible for clinical trials anymore or at least you have very limited options. I am
Just wondering how much time left a range?
Posted 5/8/2018 12:46 AM (GMT 0)
There are clinical trials that don't allow previous chemo and there are clinical trials where previous chemo is a requirement. Four out of five men starting docetaxel as a final therapy survived less than 3 years. It is unknown how much experimental therapies like PARP inhibitors, PD-L1 inhibitors or Lu-177-PSMA may add.
Posted 5/8/2018 12:51 AM (GMT 0)

LuvMyDAD said...

Just wondering how much time left a range?

My cancer diagnosis was very frightening(like everyone else). I know my life expectancy is probably a lot less than it was a year ago. A well meaning friend wanted to probe about the topic. My reply: How long do you have to live? Tell me when you expect to die. The point being, tomorrow is promised to no one. A stroke, heart attack, auto accident, gunshot, etc. happen everyday. A brain dead little boy is now up & about and in the news. Life is fickle. I'm trying to enjoy something every day. If you need to hear "6 months", ""1 year", "5 years", I suggest you not ask here. Ask your Dad's MO to make his/her guess. I pray your Dad finds further relief from whatever treatment he gets. He's lucky to have a caring child.
Posted 5/8/2018 1:22 AM (GMT 0)
I keep up with the Keytruda Clinical trial and they are recruiting individuals who have Mets and who have had chemo. Wishing you and your Father the best.
Michael
Posted 5/8/2018 1:47 AM (GMT 0)
You can use his PSA doubling time as a pretty good predictor of survival time..At the moment your Dad's looks to be about 5 weeks...If it continues to double every 5 weeks his PSA will be 2400 in about 2 years. So your goal now is to slow that PSA velocity down as much as possible... Chemo can be very effective if you get a good response to it and your Dad can tolerate it...I start chemo (Dosetaxel) tomorrow) and I'm in exactly the same position your father is in.. You play the hand you were dealt and hope for the best..
Posted 5/8/2018 2:12 PM (GMT 0)
Thank you all for your honest feedback. I know it sounds cliche, but I can't believe this is happening. My dad is an angel, he doesn't deserve this. Hopefully chemo isn't the last weapon we have. Can I ask you guys, if the hormone treatment stopped working...isn't it still a good idea to take it while on chemo? As it appears its more effective when combined wtih chemo, or am I wrong?
Posted 5/8/2018 2:34 PM (GMT 0)

LuvMyDAD said...
...if the hormone treatment stopped working...isn't it still a good idea to take it while on chemo? As it appears its more effective when combined wtih chemo, or am I wrong?


I'd like to offer one clarification.

From the words you've selected, you speak of "chemo" in the singular form. There is more than one type of chemotherapy which may be offered and appropriate to him. From your wording, it appeared that you may not be aware of that. One step at a time.



Wishing you strength.

Post Edited (NKinney) : 5/8/2018 1:12:08 PM (GMT-6)

Posted 5/8/2018 2:43 PM (GMT 0)
Thank you I know they do chemo in steps now like hormone treatment. I just bunched them all into "chemo." Can I ask you do you know "on average" how effective they are? I know in the past (I hope it is the past) I read studies where it stated it extended life expectancy by 4 months, I hope that is not the case now.
Posted 5/8/2018 2:59 PM (GMT 0)

LuvMyDAD said...
Can I ask you do you know "on average" how effective they are? I know in the past (I hope it is the past) I read studies where it stated it extended life expectancy by 4 months, I hope that is not the case now.


It's really not meaningful to talk about "average" effectiveness...and here's why...

In general, chemotherapies are either effective for the unique biologies of some people, or they are not. There really is very little to do today other than "try it" to see if it works; there's no screening for effectiveness. Often the numbers might be low--works for 1-in-3, for example, but that's often good enough odds to try it.

But now think of the math involved. If it extends life for 1-in-3 for 12 months, but does nothing for the other 2-in-3, then the average extension for all who tried it is 12/3=4 months.

This pretty much describes the "gamble" involved in chemo...do you want to take the punishment associated with chemo side effects to try to be the 1-in-3 (just my hypothetical example) which gets 12 months extension (hypothetical)?

helpful?


[If you're good with math, if you get your hands on a study of a particular chemo, you can compare the median life extension with the average. That will tell you the skew of the distribution. If you are not so good with math, this last bit was probably gibberish.]

Post Edited (NKinney) : 5/8/2018 9:03:56 AM (GMT-6)

Posted 5/8/2018 3:06 PM (GMT 0)
Thanks for explanation. It is definitely worth a try ,even though my dad wants to push it off as much as possible. I believe I have read that the earlier you start it the more effective it can potentially be. Thank you Kinney for your reply, I really appreciate it.
Posted 5/8/2018 3:24 PM (GMT 0)
I don't think they will stop the HT..Most Oncologists feel while it may lose most of its effectiveness it still is suppressing the cancer to a certain degree..It also results in a nice reimbursement for them...
Posted 5/8/2018 3:40 PM (GMT 0)
Hi Fairwind, he was on Xtandi and they told him to stop it since it isn't working fo rhim
Posted 5/8/2018 6:31 PM (GMT 0)

LUVMYDAD said...
if the hormone treatment stopped working...isn't it still a good idea to take it while on chemo? As it appears its more effective when combined with chemo, or am I wrong?

They will ABSOLUTELY continue the hormone therapy. There is great misunderstanding about this, as I can see from the erroneous response you received. After castration resistance sets in, it is even more important than ever that testosterone be suppressed. One of several causes of castration resistance is the upgrading of androgen receptors -- the receptors become much more numerous so that even the slightest bit of testosterone activates cell division. So they must continue him on Lupron or Firmagon.

You are right that androgen deprivation and chemo have a synergistic effect. Docetaxel (the first line chemo used in cases like this) adds a median of 2.4 months to survival. That doesn't mean he will survive only 2.4 months; it means that his expected survival is 2.4 months longer with it than without it. Median means that half the men will survive less than 2.4 months extra and half the men will survive more than 2.4 months extra. Docetaxel also improves quality of life. After docetaxel stops working, they can try a second-line kind of chemo called Jevtana.
Posted 5/8/2018 7:02 PM (GMT 0)
LMD, Lupron costs $2K-$3K for a six month shot, probably less than that when they get done discounting it....So the insurance companies don't mind paying for it forever...But the Xtandi / Zytiga cost $10K / Mo so unless they are working well, they are quickly dropped. You might get a little help from the off-patent Casodex which Xtandi / Zytiga have replaced...Have your Dad's Testosterone checked. If it's 10 + - 2 you might consider castration as a last ditch option. It will lower his testosterone to the absolute lowest level possible and it's cheap...
Posted 5/8/2018 7:08 PM (GMT 0)
I stand corrected; thanks for clarifying. Upon reflection, specific sequencing of chemo treatments is not something I study up on, and I shouldn't comment on; I trust Tall Allen's input on this. In fact, I'm going to go back and edit my prior response so as to not cause possible confusion by future readers. Thanks again...

Post Edited (NKinney) : 5/8/2018 1:13:48 PM (GMT-6)

Posted 5/8/2018 7:44 PM (GMT 0)
thinking of your Dad LMD I know how much I love mine too best wishes to you hope is eternal
Posted 5/8/2018 8:33 PM (GMT 0)
Hi LuvmyDad

I have been told by my medical oncologist and urologist that we will never stop the Lupron shot that I receive every 90 days. This mind you is in Canada. I had chemo at the start of my treatments.

I wish your dad the best with his new procedures.
Posted 5/9/2018 12:58 AM (GMT 0)
Hi LuvMyDad,
My dad is going through pretty much the same thing right now. He has just started his chemo a couple of weeks ago. I have been wondering the same things as you have. How long does my dad have left, etc. The answer is that nobody knows. I don't even pay attention to the statistics much anymore and here is why. I have gone to my dad's doctor with him and I bring up things that are on the Internet and she tells me that this is wrong or that is wrong. In fact this last time I was upset and scared that he has bone mets and she acted like I was nuts and she wondered why I was so worried about it. (She's kinda rough around the edges, but a very good doctor.) I told her that I read on the Internet that once it gets in your bones it grows fast. She told me I am crazy! Just when I think it's hopeless they give him another medicine and act like it's no big deal and he should just continue life as normal, and then they tell him they'll see him at his next appointment. I had to finally accept that my dad is not going to live forever and if it isn't PCa he dies from, it will be from something else. So I have learned to enjoy today. And don't give up hope because it seems to be that the human body has a lot of fight in it.
Posted 5/9/2018 1:40 AM (GMT 0)
LuvMyDad (and everyone but Tall Allen):

This isn't particularly a suggestion, just a question for the Tall one. I thought about emailing him but it might be of interest for some of the participants on this thread.

Tall:

Every time I hear a categorical statement my imp of the perverse drives me to try to find exceptions.

You said...
They will ABSOLUTELY continue the hormone therapy. There is great misunderstanding about this, as I can see from the erroneous response you received. After castration resistance sets in, it is even more important than ever that testosterone be suppressed. One of several causes of castration resistance is the upgrading of androgen receptors -- the receptors become much more numerous so that even the slightest bit of testosterone activates cell division.


The upgrading of androgen receptors may also make the cancer sensitive to supraphysiological testosterone therapies -- Bipolar Androgen Therapy (BAT). A writeup in The Lancet: Oncology this past January reports the results of a Phase 2 study on castrate resistant men who had progressed on enzalutamide (Xtandi). If I read the result correctly they seemed to achieve a re-sensitization to Xtandi in something like half the cases.

Bipolar androgen therapy in men with metastatic castration-resistant prostate cancer after progression on enzalutamide: an open-label, phase 2, multicohort study
Posted 5/9/2018 2:53 AM (GMT 0)
LuvMyDad, I’m so sorry for your troubles. I have a daughter who worries about me all the time, and I am not in any sort of situation like your dads. And I hate seeing her worried about my health issues. So I can only imagine how you must feel.

If I may, I don’t want to be insensitive, just feel it’s important that you know, you are looking for answers regarding how long your dad might have, that don’t exist. Nobody knows. Not even the doctors can say for sure. If you ask and they answer, they will be giving you averages. Averages mean a lot in a big group. But they mean nothing to the individual. So as much as you want to know, try to spend less energy worrying about how many days months or years he has left, and spend more energy enjoying each day with him, and making memories with him that will last a lifetime. For all you know, he may have way more time than you think. And it would be a shame to waste all that time in a state of worry and wonder.

I know this advice is idealistic and not easy to put into practice. But I’m pretty sure it’s what your dad would want if you asked him. I hope you can find a way and that your dad surprises you and sticks around for a long time.

Where there’s life , there’s hope
Posted 5/9/2018 3:28 AM (GMT 0)
I agree with Prato. Great advice.

Paul
Posted 5/9/2018 6:37 AM (GMT 0)
PDA-

As you know, I'm a big BAT fan. But whether ADT is continuous or continual (as with intermittent or BAT), ADT for advanced PC is for life.

As I pointed out in the following, supraphysiological doses of testosterone may also have a synergistic effect with chemo. That's why they added a kind of chemo (etoposide) in the BAT trial. However, they concluded it didn't add much and increased toxicity too much to be worthwhile.

/pcnrv.blogspot.com/2016/09/testosterone-to-treat-prostate-cancer.html
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