Zytiga Side Effect Inquiry

I'll try to keep this post short and simple:

I'm trying to decide whether to push for/encourage an oncologist to add zytiga and prednisone to my Lupron. My situation is this: I'm 52 years old, athletic, diagnosed with PCx in May 2015, Gleason 4+3 and 4+4. Failed brachy/IMRT combo in late 2015, PSA doubling rate of 3 weeks during recent intermittent Lupron break. Started Lupron in august 2016. PSMA / PET shows small hot spot metastasis outside the prostate area (abdominal aorta lymph node and one other spot) CT scans and bone scans still clean. My psa went as low as 0.1 before I went on the intermittent Lupron holiday.

One MO wants me to start adding zytiga and pred. Another does not (because he's worried about my 30% plaque buildup in 3 small periphery arteries and the effect of the zytiga on leg swelling, high blood pressure, increased triglycerides, potassium impacts etc.) My cardiac stress test went very well two weeks ago. Doc thinks no increased plaque since two years ago.

Here is one list of zytiga side effects from a website: "Common side effects of Zytiga include: decreased serum potassium, increased serum aspartate aminotransferase, increased serum triglycerides, fluid retention, and hypokalemia. Other side effects include: hypertension. See below for a comprehensive list of adverse effects."

I eat really healthy, exercise 5-6 days a week. My coronary artery disease is due to heredity + possibly not keeping my triglycerides down over the years. I only have HDL levels of ~28 trying to clean my arteries.

I don't really like the idea of going on the zytiga/pred combo but based on the recent studies, it seems like I might live a few years longer (nobody knows for sure of course) if I add the zytiga/pred.
I'm leaning towards adding the zytiga/pred if I can get insurance to cover, but I wanted to get one last set of thoughts from those of you who have had similar situations and got advice from top notch MO's around the country.

I realize that the side effects of zytiga are unpredictable but just curious what people on Zytiga think. So far, most of you taking it say they tolerate it well but I'm curious if those who didn't respond well are just not chiming in with their thoughts and experiences.

I apologize to those of you who have already read similar posts from me but it's a big decision. I'm also calling today to get an appointment with a 3rd MO.

thanks in advance and sorry the post didn't end up being short.

George

For what it is worth, I'm about three weeks into adding Zytiga with my Lupron for ADT. No additional side effects noted at this time. In fact, since the Zytiga treatment also adds the steroid, I'm actually feeling a tiny bit "peppier" than pre-Zytiga. Could be psychological knowing that I'm taking the steroid, but definitely no worse than Lupron alone for me so far. As far as liver or heart complications, I can't comment yet. We'll be watching for these for sure. Hopefully, it won't be an issue.

George, I have been on Zytiga and Lupron for over 52 months with undetectable PSA. Few side effects for me although rather high liver enzymes at first which went down to normal after a month or so. I take Crestor for cholesterol (133) HDL (44) LDL (56) and trig (154) all very good numbers. Blood pressure was 106/60 a few days ago. I was dx gleason 4+5 in July 09 with RRP in Aug 09. I would definitely recommend the Lupron with Zytiga and prednisone. In my case, it has been a wonderful drug.
The Old Sailor

My only side effect was that it shut down my liver. It did drop my PSA dramatically, but that doesn't mean much with no liver. So I moved to Xtandi.

Thanks to those of you who have responded so far.

Questions for you:

Old Sailor - what was your gleason and psa doubling time after your initial treatment in ~2009?

Michael T - what dosage did you cut in half, the Zytiga or the Prednisone?

George_ - What was your psa doubling time after initial treatment and gleason score and has your current 1 year doubling time been slower than what the doubling time was before you got the directed SBRT? How did you know where to target the SBRT, from CT scans or psma/PET? Is SBRT better or easier than IMRT?

Thanks to the rest of you for your time and insights!!

George G.

George,

I had a PSA value of 3.48 before the SBRT radiation and a PSADT of about three months. After the SBRT my Nadir was 1.09 and the PSA value is now about 1.6. The PSADT is about a year now, it changes a bit with each PSA test.

"How did you know where to target the SBRT, from CT scans or psma/PET?" From a PSMA/MRI I had done. The RO had marked the affected lymph nodes in color on the images. So they could locate these lymph nodes for planning the SBRT later.

" Is SBRT better or easier than IMRT?" SBRT in my case was done in three sessions and caused no side effects. Side effects are rare when radiating lymph nodes. IMRT to the lymph nodes could be about 30 sessions and cause side effects.
The advantage of SBRT is that you can repeat the radiation as often as required. You cannot do that with IMRT, this can be done only once. On the other hand, with IMRT you will radiate a larger area and may radiate metastases too small to show up on a PSMA PET/MRI or CT. The radiation dose of SBRT is higher than IMRT. This makes sure to control the radiated mets and you will need no adjuvant ADT.

I had a second opinion now and that states that I have Gleason 8.

George

Hello George Glass,

I know when posting, it's good to get a wide variety of responses.

There are many of us fellows here on ZYTIGA ... some fellows have been on it for a handful of years.

In my case, I have been on it for over 30 months. I save the empty bottles, lined up on a shelf, just as a way to mark my progress on ZYTIGA. Over 30 monthly prescription bottles lined up now ...

A bunch of members banded together here and formed a collection of our experiences with ZYTIGA.

Since you are seeking insight and information on first-hand experiences, go to the top right-hand corner of your screen and find the SEARCH SCREEN.

In that screen, type in this thread title: ZYTIGA: OUR COLLECTIVE EXPERIENCES.

It will pop up immediately --- click on that, and you will read a wealth of first-hand experiences with ZYTIGA from our members here.

I think you will find it helpful and insightful.

Wishing you all my very best,
CYCLONE ~ Iowa State University