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Hello and Update (G9 and starting PSA >6000)

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Posted 6/23/2017 3:08 PM (GMT 0)
Hi everyone
My husband was diagnosed in October 16 with a PSA of 6700 and Gleason 4+5. Widespread in bones and lymph nodes.
He has since been on zolodex injections every 12 weeks and had 6 cycles of chemo. The response to chemo was very good with a reduction in size of all mets.

The PSA reduced very significantly over 6 months (From October 16 - April 17) to 1.3.

The latest PSA test done this week (8 weeks later) is now 1.1 so the rate of reduction is obviously slower. Although it is obviously very low compared to the original PSA it is not near undetectable (Is that lower than 0.2?) and I'm not sure whether 1.1 is really good or not.

I guess I'm also just wondering if the reduction in PSA is likely to stop and then start reversing now (and therefore need a switch to second line treatment.)

He has an appointment with the oncologist next week and will obviously ask questions then but I find the info and insight on this site so useful.

Thanks for any input x
Posted 6/23/2017 3:14 PM (GMT 0)
Hi Sallyyy

Glad you found this site, its pretty amazing isnt it! I dont have any knowledge about the treatment type your hubby is on but i wanted to welcome you and tell you that the whiz kids will be along soon to answer your questions and give advice.

Hoping that the PSA keeps the downward trend!
Posted 6/23/2017 5:10 PM (GMT 0)
that's a great drop in PSA. Hope it stays there for a long time.

Not sure if you can really predict what it's going to do from here. Maybe some of the more knowledge folks will have an answer.

Do let us know what the doc says,
Andrew
Posted 6/23/2017 5:18 PM (GMT 0)
That is a phenomenal response! 6700 to 1.3 - wow!

When PSA is that high, there will always be some cells that are chemo and hormone resistant, so the response is never permanent. It may help to think about it as something you want to maintain as low as possible, even if it doesn't disappear entirely. There are lots more drugs in the armamentarium as the cancer becomes more resistant.
Posted 6/23/2017 6:54 PM (GMT 0)
Be sure to check his testosterone level to be sure it has been reduced to "castrate level". The lower it is the better....

When the cancer starts to progress (that may take years) the next drug they will probably use is Casodex, Bicalutimide is the generic name, which usually produces another remission..After that there is a growing list of newer drugs and treatments that can extend his horizons for many years..The huge response he has had to the initial treatment is a very good sign...
Posted 6/23/2017 6:54 PM (GMT 0)
Thank you so much for the messages and thoughts. I still feel like I'm on a very steep learning curve so every bit of info is useful.
Posted 6/23/2017 7:14 PM (GMT 0)
If you feel the need for more information, a good book to read would be Dr. Pat Walsh's "Guide to surviving prostate cancer" 3rd edition..It separates the wheat from the chaff....
Posted 6/24/2017 4:45 AM (GMT 0)
Holy Cow what a drop in PSA!! And on first line of tx too! Go celebrate!!! Make some plans and go get some livin in Sallyyy! So happy for you and your DH.
Beth yeah
Posted 6/24/2017 5:42 AM (GMT 0)
Amazing PSA drop !! If the PSA goes up even a tad, please have his Doc to get him on Casodex Stop correcting "immediately". With the tremendous initial PSA drop that he has, I can foresee Casodex giving him a few more years of low to undetectable PSA.
He is brave warrior indeed. Please keep us updated and know that he has many brave soldiers watching his back
Posted 6/24/2017 5:44 AM (GMT 0)
Please excuse the stinking typo on the previous post "Stop Correcting" Not sure what that was all about urghhh
Posted 6/24/2017 9:27 AM (GMT 0)
Really interesting that a few of you have mentioned casodex / bicalutimide. I *think* next stage treatment in the U.K. is often Zytiga (arbireterone) or enzulutamide.
Thank you again for all your good wishes x
Posted 6/24/2017 9:42 PM (GMT 0)
Hi Sallyyy,

I was similarly diagnosed a little over 3 1/2 years ago at age 65 in November 2013. I had a lot of pain in one area of the lower back, and in an enlarged lymph node in lower abdomen.
My starting PSA was 5,006.
At that time I was treated with Lupron and Zometa, and my PSA dropped below 3 within 2 months, below 2 within 6 months, and reached a nadir at 1.0 about a year after diagnosis. During the second year my PSA slowly increased to around 3.8 as resistance developed.

Since that time, new options have come from the results of the CHAARTED trial in the USA, the STAMPEDE trial(s) in the UK, and, more recently, the LATITUDE trial. Were I diagnosed today, I would be talking with my oncologist about doing Androgen Deprivation Therapy/Hormone Therapy + early Docetaxel, or ADT/HT + early Zytiga.

During my third year I did a short rechallenge with Casodex, then some inherited family genetics testing, then some Provenge, and finally started Xtandi about 7 months ago when my PSA was up around 95.
Again had a good response, and my current PSA is again down to 2.6, so far.

Charles
Posted 6/24/2017 11:10 PM (GMT 0)
Charles thank you so much for replying - particularly when you had such a similar high original PSA. I'm really glad you are still responding positively to treatment. Keep going ! smile
Very interesting to see that it took a year for you to reach your nadir point. My husband is at 8 months.
As a result of the stampede trial his initial treatment has been HT combined with 6 cycles of docetaxel.

Post Edited (Sallyyy) : 6/24/2017 5:13:49 PM (GMT-6)

Posted 6/25/2017 1:10 AM (GMT 0)

Hello Sallyyy,

That's tremendous news --- very hopeful and encouraging news.

The ADT hormone shots ARE doing their work --- and the chemotherapy treatments have done THEIR work --- the "double-barreled shotgun" approach, so to speak.

I did the same combination of treatments that your husband has been pursuing ---

I did my series of chemo treatments three years ago, following the newly adopted "Early Chemo Plan" as we call it --- and I know that it helped me.

Since then, I added ZYTIGA to my treatments --- I've been on ZYTIGA for two solid years now --- other fellows here have had success with XTANDI, ZYTIGA, XOFIGO, and PROVENGE.

Keep all of these newer breakthrough medications and treatments in mind, whenever you may need them --- they are approved --- they are in use --- and they have helped many of us here on this website.

Stay in close consultation with your husband's doctors --- I check in faithfully, year 'round, with my main doctor every four weeks --- just like clockwork. He is very proactive --- and I do lab work each month, as well --- testing PSA and testosterone levels, and so forth, to make sure we are staying on top of things.

Your husband has had a tremendous response to his treatments already ---

I'm thankful for your GOOD NEWS !

Sent with my best wishes, from across the miles,
Iowa State University ~ "Cyclone"
Posted 6/25/2017 10:22 AM (GMT 0)
Thank you so much for the good wishes and info - glad your treatment is going well smile
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