asking for members' input: Hi guys. My... - Advanced Prostate...

Advanced Prostate Cancer

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asking for members' input

mediocra profile image
18 Replies

Hi guys. My dad is currently being treated for metastatic prostate cancer and I wanted to get some input from the community.

Dx'd 10/2018 at age 66, multiple bone mets. Initial PSA 2230.

Gleason 4+3. No visceral mets.

Started on Lupron and Casodex and added up front docetaxel.

PSA has fallen to 0.06, and he just finished his last chemo cycle.

Where do we go from here? I do not like the idea of just staying on ADT and waiting for castration resistance.

His oncologist is willing to go straight to abiraterone (I understand there is no evidence for this, but it seems like a sensible thing to do.

What do you guys think? For those in favor, any opinions on abi v enzalutamide?

I know on paper he has responded well to treatment thus far. My dad and I want to be aggressive, and it seems to make sense to continue attacking the sucker from another angle while it is weak.

Thanks.

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mediocra
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18 Replies
Tall_Allen profile image
Tall_Allen

Xofigo or abiraterone now makes a lot of sense to me - although his insurance may balk.

tallguy2 profile image
tallguy2

I finished Taxotere chemo last September. Used a before and after PET scan with Axumin to help determine what was left after chemo. Did radiation on what was left. You might ask that a similar scan be done. My urologic oncologist believes I need to wait until castration resistance before adding abiraterone to the ADT I have been on 2012-2016 and then 2018 to present.

Great results so far . Wishing dad continued improved health.

NPfisherman profile image
NPfisherman

I think with a PSA of .06, it would be unlikely that anything would show up on a scan... I believe I would do Xofigo first ... there is some thoughts that radiation and chemo when combined hold some synergy... study below with various cancers...

curetoday.com/publications/...

There has been increased fractures and death when Xofigo was added with abiraterone....

gov.uk/drug-safety-update/r...

In that case, consider adding enzalutamide...this trial is no longer recruiting--enzalutamide and xofigo:

clinicaltrials.gov/ct2/show...

Good luck, his PSA is way down, and we all hope that it will get to undetectable... welcome to the forum... sad you and Dad have to be here...

All the best,

Fish

ewhite999 profile image
ewhite999

Prednisone is a good idea at this stage. It’s the immunotherapy treatment currently available.

cesanon profile image
cesanon

You will never kill it off. You are far far far away from castration resistance.

Time to take a deep breath and see how successful your treatment has been.

When do the docs plan on ending the ADT?

Just continuing on with ADT is sort of old fashioned. And there is also the alternative of bipolar testosterone therapy to reset things if you become castration resistance.

So maybe lay off the treatment, wait until your psa reaches 2.0. Then do an auxim scan followed by a psma scan. And maybe your psa stays low for a long time.

joekaty profile image
joekaty

I understand the desire to be aggressive and attack from all angles- but being on the other side of it- husband had taxotere before castration resistant, after nine cycles he was only just on Lupron for two months before PSA started rising and we had to do something else. Now Xtandi has failed and we’re back to starting taxotere again this week. If I could have drawn things out at all I would and enjoy the respite from hard core treatments, enjoy life and feeling relatively good. Because when you run through treatments and all of a sudden you have very few options when you need them it is a crappy place to be. That all said, before Xtandi failed and his PSA started rapidly rising, we were considering radiation to his prostate- or would have been totally experimental as he did not have “low volume” disease but UTSW Dr’s were supportive of trying it in hopes of keeping PSA down for a longer period of time until more treatment was needed. We just didn’t get that chance. Good luck to you and glad he’s had such a great response so far!

AlanMeyer profile image
AlanMeyer

I don't know enough to give specific advice. I will just try to give some reactions to what you've said and some thoughts about your dad's condition.

His response to treatment so far has been spectacular. Very few men with a PSA as high as his was achieve the low level that it is at now. That not only means that the treatment was successful but also indicates that his cancer is unusually hormone sensitive and may continue to respond well to ADT for a long time to come.

So what should he do? I don't know, however I think that every treatment has a cost in terms of side effects. To see what they are you can check the FDA drug label for any particular drug. For example, here's a label for Zytiga: accessdata.fda.gov/drugsatf...

If the cancer is really under control, then adding more treatments may do more harm than good. Or maybe not. I don't know if anyone has any strong evidence that can be applied to specific cases like your dad's.

I suggest getting his testosterone (T) and dihydrotestosterone (DHT) levels tested. If they are near zero, I would think that adding stronger drugs like Zytiga wouldn't do anything but add side effects - though I'm not knowledgeable enough to know that for sure. If the DHT level is above desirable levels (DHT is thought to be more dangerous than T for PCa patients) then maybe a very mild drug like Avodart would be useful. It may be that a T and DHT test at this stage would be simpler, cheaper, and more informative than any kind of PET scan. Another potentially useful drug is degarelix (trade name Firmagon), as a replacement for Lupron rather than an add-on. It usually produces lower T than Lupron, but I don't know if the side effect profile is better or worse.

Well, as I said, I don't know what your dad should do. But those are some thoughts about his condition. I think there is a chance, with his excellent response to treatment, that he'll live for many more years and that new treatments will continue to become available during that time.

Best of luck to all of you.

Alan

i'm on my 11year and my drugs have been the basic follow up treatment. did lupron,zytiga, PROVENGE nothing more. switched from a oncologist to a urlogist and he seems to know more then my oncologist. i started at 61 your dad at 66 plus 11 years that means 76 thats not a bad report if he makes it that lonor longer. three is no cure so just follow thru with your dad's doc and remember if your not happy with him switch its your dads life not the doctor.

charlie

leo2634 profile image
leo2634 in reply to charlesmeyers1964

Hi Charlie we seem to have the same treatments, mine from the very start . My question to you did you have multiple bone Mets as I do and how did you tolerate the Provenge I haven't had that yet but will be starting soon. PSA has been undetectable since first month treatment. Leo

charlesmeyers1964 profile image
charlesmeyers1964 in reply to leo2634

i started out without the mets i had some lymph nodes 2 in the pelvic, tghen one met in a rfib another lymph in the aortic arch lymph node and finally just recently a couple in my back. the lymphs were radiated changed docs when my oncologist suggested as for the back wait until i can't handle the pain the they would radiated the back. i don't wait never believed in waiting go for it. as for provenge when they take out your 300 cm of white blood cells watch tv the time goes faster. as for when they put it in i found a lot of nice people getting chemo or whatever and talked to them to finish my 1 1/2 hrs putting it back in. for me i was glad they put a port in me for all of this and when they were done took it out. gave me a bit more moving around instead of a big bore needle in a vein,or artier s.

leo2634 profile image
leo2634 in reply to charlesmeyers1964

What about side effects and how was the outcome of the Provenge , how do they see if any results have changed in our battle.

charlesmeyers1964 profile image
charlesmeyers1964 in reply to leo2634

there are none as long as u have a port put in u. as for long term its doesn't guarantee u healing and huge drop in a psa. what it does is make your body healthier,maybe make u live longer. now on the internet it claims 4 years longer and u feel better. remember everyone reacts differently from this treatment and others. medicare paid for all. i'm on my 11 year with psa at 37. my new doc a urologist is changing my over the counter meds and new drugs down the road. time will tell

j-o-h-n profile image
j-o-h-n

Would you be kind enough in a future post tell us where your Dad is located? Being Treated? and Doctor(s) names(s), all voluntary. Please do not respond to me.

The info you provide helps us help your Dad and the info helps us too. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/10/2019 6:45 PM DST

JimVanHorn profile image
JimVanHorn

So there are many types of PCa, with different doctors, different insurances, newer therapies, and other diseases. There is no "Best" therapy. I started treatment in 2007 at age 63 with 42 radiations. Then in 2011 they found metastases so I had 30 more radiations and Lupron (Eligard - generic) with 4 weeks of Casodex t stop a testosterone flair. I stayed on Eligard for 6 1/2 years and stopped it in April 2018. At this time I am cancer free but on active surveillance. I wish your husband well and hope find the best treatment for you.

tom67inMA profile image
tom67inMA

That sounds very similar to my story. I'm currently on cycle 5 of docetaxel and my oncologist wants to put me on Zytiga after recovering from chemo. I appreciate this post as I'd otherwise be making a very similar one a month from now :-)

Also, thanks to everybody who responded.

mediocra profile image
mediocra

He lives in/is being treated Augusta, GA at MCG. Initial therapy seems to be fairly standardized across the board. In the back of my mind, I have been thinking of getting him established at a larger academic medical institution if/when the time comes we would need to consider enrolling in trials.

I'm receiving some guidance from Dr. Earle Burgess, in Charlotte, NC (acquainted through a family member). Got the sequential abiraterone idea from him. Not sure if enzalutamide might be a good idea as well (from ARCHES data).

I was worried about insurance approval too, but Dr. Burgess apparently hasn't had major issues using it sequentially after chemo.

Hadn't thought about radium-223. I wonder if its efficacy would be less at this time, as PSA is so low/cancer less active/less bone turnover? His alk phos was in the 400s at one point, but has been in normal range (60s-70s) on last several checks.

Thanks for everyone's input!

Frankly, he could be 86 before the Lupron stops working....... time enough for silver bullets, IMO..... congratulations for getting aggressive and taking chemo early while his body is strong and probable tumor burden minimal. You’ll know if PSA changes from undetectable. Monitor each month and then get aggressive again.....

Of course, my opinion and 12 bits might get you a cup of coffee in the local diner. :)

Gourd Dancer

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