2_old_and_grey

[2_old_and_grey]

I am new to the site. Being treated with Zytiga for a little over two months. Two tablets per day of 500mg strength. at start PSA 400, end of the first month PSA19 end of 2nd month PSA now 2. Seems like it is working but not sure where we go from here.

[Darryl Partner]

Welcome

[2_old_and_grey]

Thank you. I hope to get more insight. I am a cancer survivor from 2007. Lost 3 upper teeth on the right side of my mouth (of course,:)!) Still, have a sense of humor.

[Darryl Partner in reply to 2_old_and_grey]

Will you be attending the prostatecancerconference.org

[PaulC2]

I've been on Zytiga for more than six years now. When I'm not on ADT (androgen deprivation therapy), my PSA doubles every 60 days. My PSA has stayed at or below 0.05 for many years, except when I experiment with a "holiday" to see if the cancer is still there and ready to grow if left untreated. It is and it does, and so I expect to stay on Zytiga or its successor(s) for the rest of my life.

My Gleason sum, like yours, is 9 — very aggressive cancer (which correlates well with my short PSA doubling time of 60 days).

If your PSA has dropped from 400 to 19 to 2 in the course of two months, something is clearly working. You mention nothing besides Zytiga, so it seems reasonable to assume it's the Zytiga. Unless you develop a bad reaction, there's every reason to think you can stay on Zytiga for the rest of your life and die of something other than prostate cancer.

What might be a bad reaction? I've only had one, and it occurred after several days of 100-degree temperatures when I was attending an outside afternoon party and consuming some alcohol. Long story short: Thanks to dehydration, my potassium level decreased to dangerously low levels, and I was admitted to the ER with kidney failure. Had I not been taking Zytiga, I'd probably have been quite dehydrated, but my potassium wouldn't have plummeted as far. Nowadays I take two potassium tablets every day and am careful to keep myself hydrated, especially during hot weather.

Other reactions are common to all forms of ADT: Diminished or absent libido, often accompanied by hot flashes, weight gain, fatigue/weakness, depression, diminished exercise, edema(dropsy), elevated blood pressure, and elevated cholesterol. Over time, this constellation of smallish problems can feed on itself and result in diabetes and/or heart disease. Another common sequela of ADT is diminished bone density, resulting in osteopenia or even osteoporosis. I've had all of these, starting with my first bout of ADT (Lupron+Casodex) back in 2008. They're all mostly managed now with medication and exercise.

Less common, and more specific to Zytiga, are liver reactions, which are said to affect 2 to 3% of patients on Zytiga, usually during the first several months of treatment. You and your doctor should be watching your liver function carefully, because blood tests will usually supply information long before you start to feel symptoms or show signs (like jaundice) of liver problems.

You and your doctor should also be aware of possible drug interactions with certain cold and cough medicines, heart medicines, and antidepressants. I believe these are rare and usually mild, but I am not a physician, and you shouldn't trust medical information you get from the internet.

What are your specific concerns?

[Apfadt in reply to PaulC2]

Hi Paul

I read your reply to Joel’s post a while back and then haven’t followed this list serve since then. Glad to hear that you are doing so well on Zytiga.

I have a Gleason 9(5+4) bad boy like yours that didn’t respond to either surgery or radiation.

Like you as well, when my cancer is active my PSA doubling time is about 60 days.

I have had a pretty good year with Erleada as a monotherapy, after my conventional ADT medication ( Firmagon) bottomed out with my PSA at about 5 ng/ ml and t levels below 15.

I bailed out before I officially became castrate resistant so I still have that treatment option for later.

However, while taking Erleada not only did my PSA drop quickly to .05, but my t levels increased to 450 ng/dL and stayed consistently high ( for me, before cancer diagnosis they were only about 250) throughout Erleada treatment.

It was quite a shock to me and my oncologist that I could retain such low PSA levels in the face of such high t levels.

One benefit was that I have been able to complete 3 writing projects during 5he pay year that I struggled with since my cancer was diagnosed.

I also stopped drinking 2 and 1/2 years ago and I think that helped as well.

Our previous posts show that we both value the eternal wisdom of the Serenity Prayer, which provides me with a sense of emotional balance and perspective that I lacked previously.

Glad to hear that your treatment is still proceeding so well.

Keep on keeping on, as we used to say.

[PaulC2 in reply to Apfadt]

Hi Apfadt,

Good to hear from you — we Gleason-9-ers should stick together!

Your reaction to apalatumide (Erleada) is indeed unusual, and I'm glad for your sake that you're managing to keep your testosterone high and your PSA low. I wish I could do the same.

Once the cards are dealt, we can only control how we play the hands we were given. I'm grateful for the overall package I was handed, despite the Gleason-9 joker.

Like you, I continue to continue. ☺

[2_old_and_grey]

I should have mentioned I also receiving Zometa every three months by IV and Luberon shot every three months as the doctors figure cancer may have spread to the bone. I am also taking calcium tablet twice a day.

[PaulC2 in reply to 2_old_and_grey]

Zometa is a bisphosphonate that strengthens the bones, not just against the possibility of bone mets (metatastases), but also against the bone brittleness that can result from being on testosterone-suppressing drugs like Lupron and Zytiga. Calcium supplementation is standard for anyone on a bisphosphonate.

I was on a bisphosphonate for several years, but when it became clear that I might well survive for another five years or even longer, my oncologist switched me to denosumab (Prolia) because of the recommended lifetime cap on bisphosophonates.

[2_old_and_grey in reply to PaulC2]

thanks for the reply. My doctor explained the meds were needed for bone protection. But people speak gets the message across in clearer language. 👍

[2_old_and_grey]

I will not be attending the conference.

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Hi: I have been on 1000mg Zytiga for 13 months AND 5 mg Prednisone. It supports the Zytiga. My PSA has been undetectable the whole time. 0.014. All the best. It does work. My question, like yours, then what????