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Rising PSA....post Chemo while on Lupron

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Posted 4/6/2019 3:28 PM (GMT -5)
Hi,

I have metastatic PCa... Gleason 8. (Lower) Lymph nodes n skeleton affected. My Chemo (docetaxil) was June-October 2018. My Lupron injections are 6 mo apart. My post chemo PSA has been hovering around 4-5 for a few months. 4/2 test was 12.83, I think. I had a verification test 4/5 and it was 16.87, I think.


Has anyone had this kind of rise? Was it treated with a 2nd Hormone? Was it treated with another round of chemo? Kinda bummed, and looking for info.

I’ll update my profile shortly...

Thx, Paul
Posted 4/6/2019 3:29 PM (GMT -5)
I meet w my MO on Monday...
Posted 4/6/2019 3:52 PM (GMT -5)
NOTKindeystones, unfortunately, it sounds like you may be castrate resistant. But that seems weird, since from your signature, you are not even on ADT for a year? It sounds like you are not sure about the re-test, so maybe there is a misunderstanding. I hope so.

Its good that you are seeing your MO Monday, so you can at least get some answers. Please let us know what he/she says.
Posted 4/6/2019 6:34 PM (GMT -5)
Paul,
I’m thinking he might add Zytiga or Xtandi to the Lupron. Hang in there and see what the MO says Monday.
Posted 4/6/2019 7:46 PM (GMT -5)
May be time to consider Provenge. May make the second line ADT drugs work better. This has worked for others like Todd.
Posted 4/7/2019 6:05 AM (GMT -5)
Is lupron working? What is testosterone?
Posted 4/7/2019 9:55 AM (GMT -5)
My T hovers between 10-15... last reading was 14.5.... Lupron is doin it’s job.

I’ll definitely let y’all know what she says.
Posted 4/7/2019 2:27 PM (GMT -5)

Hello NOTKIDNEYSTONES,

Hope you are getting some answers --- it's important to stay vigilant and on top of things with your doctors.

My oncologist meets with me every four weeks, with labs done every four weeks, as well.

In order to have a more informed consultation, I actually do labs a week in advance, before seeing him, so that he has a chance to receive and study all lab results before we meet each week. This is a strategy that may be helpful to other readers out there, as well.

My history revealed beneath my signature reveals the treatments that I have pursued since diagnosis in 2013. My initial PSA at diagnosis was over 100 then, and my prostate cancer had infiltrated both of my lungs by then.

My doctor has had me try 3 different forms of ADT. Even small amounts of residual testosterone can "feed the fire" ... my testosterone levels were roller coastering up and down. I started with LUPRON, tried FIRMAGON, and have now been on ZOLADEX shots for quite a while. Trying all 3 kinds of ADT, and also tracking testosterone levels, allowed my doctor and I to find the form of ADT that "squelched" my testosterone levels the best, with my levels now less than 7, each month, consistently.

My original urologist was unwilling to use anything other than LUPRON --- he is "old school" --- my oncologist felt that we could get better testosterone control by trying the other shots. ZOLODEX has worked well for me. It's worth a conversation.

After chemo was over for my, my doctor added ZYTIGA --- I have been on it now for over 40 months, and it has helped keep my PSA more controlled. Other fellows here are on XTANDI ... discuss with your doctor the strong possibility of adding either XTANDI or ZYTIGA.

A year ago, a series of radiation treatments was suggested for me, as well. All of these strategies, shown above, have helped me keep my PSA consistently in the decimal range, less than 1.00, since I was first diagnosed. I have followed every course of treatments that they have suggested. Gotta' do, what you gotta' do.

Stay determined --- stay the course --- stay vigilant!

Handshake, from across the miles, from "one brother to another brother" ~
CYCLONE ~ Iowa State University
Posted 4/7/2019 6:01 PM (GMT -5)
Thx for the response Cyclone.... that’s a lot to think over.

Do you have a goal T level? It sounds like you are aiming at a T level <=7. Is that right?

I assumed that a value of 10-15 was “Low,” but maybe I should aim lower?

Paul
Posted 4/8/2019 5:46 PM (GMT -5)

Hello NOTKIDNEYSTONES,

Good question that you posed ...

In higher risk cases, even small amounts of testosterone can "pour gasoline in the engine" and fuel prostate cancer.

There have been studies that show many doctors prescribe ADT shots for prostate cancer men, but then they fail to EVER have a testosterone reading ordered, occasionally, at the lab. It's a simple request that any of us fellows can ask for, if on ADT shots. The point is --- you want to make SURE your form of ADT shot is suppressing testosterone to help manage PSA.

In my case, my oncologist did what my original urologist failed to do --- he said, "Let's track your testosterone level." Sure enough, as my PSA went up and down, so did my testosterone.

He asked my blessing in trying other forms of ADT shots --- so, we went from LUPRON, to FIRMAGON, and ultimately ZOLODEX.

Since transferring over to ZOLADEX, my PSA now stays consistently below seven. I have to believe that's helping me, at least in my case. I don't want any EXTRA "gasoline in the tank" in terms of "fuel for the fire" in feeding the prostate cancer.

This is an easy conversation --- fellows should occasionally ask for a testosterone test, because it's commonly overlooked. We all go to the lab, anyway ...

I think back to my original urologist who REFUSED to consider anything but LUPRON ... you can easily see why my ONCOLOGIST was immediately promoted to the QUARTERBACK of my medical team, for having the insight to try FIRMAGON and then ZOLADEX, which for me, helped stabilize the testosterone level, in my particular case.

With LUPRON, my levels showed "peaks and valleys" and that isn't the case, anymore. I realize LUPRON is the "tried and true" --- but there is FIRMAGON and also ZOLADEX.

I have had no issues with ZOLADEX, and actually prefer it over the others, in my personal experience with all three. Sometimes you have to think outside the box, and I'm grateful for an oncologist who had the foresight to try this.

Just some insight, one brother to another brother,
CYCLONE ~ Iowa State University
Posted 4/9/2019 2:00 PM (GMT -5)
Hello Not Kidney Stones

First of all seek a second and third opinion from the best MOs you can find. Once I was diagnosed (psa=135, bone scan lit up like a christmas tree) I went to Dana Farber and Tufts. I live in Boston so I am lucky that way. These gentlemen reviewed my biopsy, had their radiologists look at the reports, did their testing, and made recommendations. I started with a monthly dose of Firmagon, and moved to Lupron (3 months) on the advice of the MOs. While I thought my urologist did an excellent job in his diagnosis, I was not comfortable in just being in his care.

Both MOs recommended a clinical trial, and I ended up in the standard care (Lupron and Casodex) for 4 years. When this was over I went back to one of my original MOs, as we were on the same thought process. My psa started climbing and had a successful run on Zytiga for two years. We are now in the process of evaluating the next steps.

So first of all, I am crmPC. I have not had standard chemotherapy, as my scans have indicted an significant reduction in my bone mets. Until that one fact changes, I am concentrating a my quality of life. Once things go sideways, I will be very aggressive in treatments. Until then its delay, delay delay.

As ISU indicated you are the coach and general manager. Take control of your treatment. I have a four inch three ring binder which I keep copies of everything, including CDs of all my scans. It allows me to have the information at my figure tips, and is the basis of my play book.

Also, follow the T levels. Mine has been <3 since I started, and is looked at every appointment. I go in every 3 months, or when I (as in capital) believe I need to.

There are lots of options out there. No one path is correct for anyone. Decide what your goals are and move forward. Remember, you are not alone my friend.

There are also other things you can do to help. I talked to a therapist when I was dealing with depression and anxiety. I attend monthly support groups. Even started running the Zero Cancer 5 Ks to raise money.

Best wishes.

Mike (aka kmclark1)
Posted 4/10/2019 10:30 AM (GMT -5)
Thanks, guys...

My MO Is concerned about the rise. I will be getting more scans tomorrow. Then I will go to Roswell Park. It made the list of the centers of excellence for Cancer. Dr. Chatta there seems pretty well regarded. My appointment with him is the 18th.
Posted 4/18/2019 10:56 PM (GMT -5)
Today I went to Roswell Park cancer institute to meet with an expert. My PSA today was measured at 20. I will be enrolled in a clinical trial. I will add Xtandi, and if I am not in the control group, I will receive ribocyclib, which currently is used to treat breast cancer.
Posted 4/19/2019 8:22 AM (GMT -5)
NKS,
I’m always impressed with the guys who volunteer for studies - it helps us all. The Xtandi should bring the PSA down.

Keep us posted and good luck!
Posted 4/20/2019 7:05 AM (GMT -5)
A Study changed the way I look at my future completely. I knew from a relative who has past PCa experience and with his very low T is kinda feeble that wasting away is a possibility. I thought it was my future. The EXCAP Study taught me otherwise. Exercise for Cancer Patients Study challenged me to exercise in order to maintain muscle mass. So far, so good.
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