Update on Treatments

Just a quick update as I haven't posted in a while. My latest PSA on 8-25 is up to .6. So we have gone from <.10 to .3 in 60 days to .6 in 90 days. However, my Testosterone levels have gone to 29 so my MO thinks that may be part of the problem. I am still on Xtandi and have been for 5 months. The current plan is to re-check in 30 days, repeat scans (it's been 6 months) and see where we are. We also switched from Lupron to Firmagon last week to see if that will be more effective. Otherwise, I am doing pretty well.

We live in Houston so everyone here has been affected by Hurricane Harvey. It puts things in perspective quickly. My family is dry and able to help with volunteer efforts so very grateful we can help our friends and neighbors.

I will post again next month. Prayers for Houston.

john16 said...
However, my Testosterone levels have gone to 29 so my MO thinks that may be part of the problem.

I don't understand. Is 29 good or bad? How is that "part of the problem"? When my T level tested at 30 my RO said anything under 50 is effective (though I had previously heard 30).

Hello John16,

I'm thankful to hear from you and you are staying right on top of your case, in a very proactive and informed way.

As in my case, my main oncologist started tracking my testosterone level and found that it was showing "spikes and flares" while on LUPRON.

He asked me to trust him, and he felt that he could try some things to get the testosterone level "worked down" to a lower level, because my PSA was also showing "spikes and flares" in accordance with the spikes in testosterone levels ...

From LUPRON, we tried FIRMAGON, which can produce great results. In my case, we didn't see the testosterone level go down as much as we had hoped. So, we then tried ZOLADEX shots instead ... and this resulted in the testosterone levels going below ten, which has seemed to help control and suppress my PSA levels to a greater extent.

In my case, we decided to stick with a one month dosage of ADT shots --- just in case there was ever a need to make a change. In my case, I was originally on multi-month dosages of LUPRON --- the 4 month dosage --- during that 4 month period of time, we were seeing those "spikes and flares" in between --- while waiting for the next shot to be given.

In my specific case, ZOLADEX shots seemed to control the testosterone to a greater degree. I think it's important to ask one's doctor to order a testosterone test, every once in a while, to make sure a fellow's ADT shot is working to its best potential. Suppressing that testosterone level can help suppress the PSA level.

Your post today --- and your doctor's suggestion to try another form of ADT shot might be helpful to another reader out there --- my oncologist has assured me we can ALWAYS go back to LUPRON shots, but ZOLADEX shots have been helpful in my case, as we learned by trial and error, you might say.

Meanwhile --- my doctor also reminds me that just because PSA levels rise, it doesn't always mean that it the newer breakthrough medications like XTANDI or ZYTIGA have quit working. I saw some fluctuations in my PSA over the summer, and at the end of the summer, my PSA levels went down again. Doctors also have to take other factors into account --- including scan results.

Keep tracking your testosterone levels --- I'm hoping FIRMAGON works well for you --- and there's always ZOLADEX to try --- and you can always switch back to LUPRON, when all is said and done.

Keep us posted, John16. I'm thankful for your loyalty and contributions to the forum.

Handshake from across the miles,
CYCLONE TEAM FAN ~ IOWA STATE UNIVERSITY