ZYTIGA Advice ?

Cyclone,
Yes Zytiga has worked amazingly well for me, undetectable for 10 months now. Check out Todd1963, I believe he is going on 20 months, Keep the Faith!
Dan in rainy So CaLI

Cyclone

I didn't have Zytiga but I was on Xtandi for 8 months. I stayed undetectable during that time but went off of it due to side effects.

Good that you are on top of this. I hope you have great results and get back ahead.

Best,

I went on Zytiga back in April. The first three months my PSA kept going up at a rapid rate, and then my PSA dropped by 50%. At that point I also starting showing liver issues. They pulled me off it. We've been doing weekly blood work, and the liver markers are much better, so we are experimenting this week with a smaller dose.

Yes, cost is critical. For folks like me on private insurance, there is also a $10 co-pay available to some. It is linked on the Zytiga site. However, there is a catch. You MUST sign up and get the number after the doc writes the prescription, but BEFORE the first fill is issued. My timing was hosed, so the first month co-pay was over $2k.

I am also on Lupron, and I see some of the SEs as cumulative.
The hot flashes are significantly more frequent / hotter.
Memory / cognitive issues are substantially increased.
I'll eat anything that isn't moving, so a bag of chips bought at 5pm will be mysteriously gone at 5am.
Joint pain is increased.

The significant additional ones with Zytiga have been tingling and some loss of feeling in my feet, and the liver numbers gone crazy.

But the bottom line was that after three months, the impact on my PSA was dramatic.

Hey ISU,
Looks like our similar paths are even more similar now - my HT has failed already too, and likely will start Zytiga in the next couple weeks. I just had a bone biopsy today - my oncol wanted to biopsy one of the new bone tumors to see if there is some strange version of prostate cancer or possibly is a small cell cancer since Eligard/Casodex failed after only 6 months.
Your post is also helping me - so thanks for that - as I am worried that Zytiga will not last long either - but have some hope that it helps some for a few years.
Next week I have a meeting for a clinical trial - it uses the F-18 Pet scan and CTC blood test and compares the results to the standard Canadian bone scan. This trial is to see if having the F-18 Pet scan and the CTC blood test gives the doctors better information to make treatment decisions and to see how much more mets the F-18 picks up then the standard bone scan. So I may agree to do that so we can see how effective the Zytiga is.
I hope we both will last a long time on this treatment and can continue to share our experiences.
Thank you for the post and best of luck in the battle!

Hello !

Thanks to each one of you and your responses about your experiences with ZYTIGA.

It means a lot to hear from each one of you, which gives me some great insight going into trying this new medication.

As time goes on, more and more will be known about ZYTIGA and XTANDI, as more and more patients continue to create a better wealth of experiences with these new breakthrough medications.  Doctors are still finding out how a variety of their prostate cancer patients respond to both ZYTIGA and XTANDI. 

Each thread that is created on this forum is very helpful to lots of people out there, so I thank each one of you for your helpful responses.   I see lots of people getting lots of insightful and helpful responses to their questions.  I think this forum has been a lifeline to many people through the years. 

Thankful to each one of you,

CYCLONE

Hello All ~

Some of you were following this thread about taking ZYTIGA. With everyone's input, it has become an informative thread over time. So I thank everyone for their responses !

The cost per month for a prescription of ZYTIGA can be around $5,000 or even more. That's a staggering monthly cost, to be sure, but I'm thankful this medication exists for those of us in need. My oncologist filled out the prescription, then I was contacted by a medication company known as DIPLOMAT, and they ship the prescription directly to me each month.

My insurance covered most of the prescription cost, then through the DIPLOMAT company, they worked my final cost down to a $10 co-pay each month. The ZYTIGA pills can not be directly picked up at a local pharmacy, due to the high cost. So they have to be privately shipped to you. This was new to me. Since I am working each day, I have the ZYTIGA pills shipped directly to my place of work, where the secretary signs for the package when it arrives in the mail.

I guess the DIPLOMAT company will call me each month, check in with me, ask me whether I am experiencing any side effects, and then continue to ship the medication to me as long as it is still working and prescribed by my oncologist.

I take the 4 ZYTIGA pills in the morning when I wake up, because they have to be taken without food. Then I have to take 2 very small steroid pills with lunch and dinner to help my body tolerate the ZYTIGA, so that is part of the protocol for this medication.

So far, I have no known side effects, other than the hot flashes which were already a part of my life with the hormone shots the past two years. The hot flashes are perhaps a bit more intense since starting the ZYTIGA, but certainly tolerable. I seem to feel them most in the evening, for some reason.

I was concerned that the ZYTIGA would impact my energy level, but my energy has stayed intact, for which I am thankful. So I am able to continue with my full-time career at the present time.

I had been on the ZYTIGA pills for just 20 days when I took a new P.S.A. test and my P.S.A. dropped from 0.45 to down just below 0.10, after just 20 days of taking the medication. So I was able to see the impact of the ZYTIGA after just 20 days. I wonder if my P.S.A. will drop even further after another month or so of taking this new medication?

I just saw my oncologist and he said that a rapid response to ZYTIGA can be an indicator of longer-term success with this medication, at least based on his experiences to date with other patients. I honestly feel that oncologists are learning more over time as they work with their patients and begin to have a greater range of experiences with these prescribed medications. I think doctors are still finding out how their patients respond to ZYTIGA and which side effects can emerge. Some patients don't have a positive response to Zytiga, some have a response that lasts a period of months, while some patients seem to have a longer response to the medication. My oncologist is very proud of one of his patients, as that patient has been taking ZYTIGA over the course of three years running. We all need a beacon of hope when we are starting a new treatment.

I realize that five or ten years ago, this drug wasn't even an option, so I am thankful to the scientists and researchers that are dedicating their lives to research that has given us more time and hope. We have to keep doing what we can do in pursuing these new treatments, with the breakthrough treatments and medications that are becoming available in recent years. I truly hope more breakthrough medications become available soon for everyone that is in need, now or in the future.

I realize not everyone responds to ZYTIGA, depending on each individual case. I wanted to share the results that I have seen in such a short time, in the hopes that it will ENCOURAGE someone else out there that might be reading this thread and considering the use of ZYTIGA, now or in the future.

I was thinking of the old 1970s rock song by THE EAGLES entitled "The Long Run" and hope that I can have a "Long Run" with ZYTIGA ! Maybe I better listen to that song right now for some inspiration ...

Stay strong in the battle, my friends !
CYCLONE

Post Edited (ISU-CycloneFan) : 8/31/2015 8:10:03 PM (GMT-6)

That's great news Cyclone. Thanks for keeping us updated.
I'm with you hoping that the PSA keeps going to Zero.

My PSA rose for three months, then fell 50%. But my liver shut down. That (lower PSA, but dead liver) went into a second month.

So we stopped Zytiga.

At my next evaluation, we will consider Xtandi.

Cyclone,

Very glad to hear that Zytiga is working for you already! Just wanted to add that our oncologist emphasized that with Zytiga and Xtandi, it is prudent to take them for at least 3 months, to see if they do work or not. For Xtandi, for example, it usually takes almost a month after initial intake, for the medicine to reach a steady stake, an optimum therapeutic level in the blood.

My Dad's on Xtandi, and it has brought the PSA down from 0.75 to 0.1 in 3 months, but the side effects are rather severe (extreme fatigue and bad nausea, combined with a lack of appetite), but if it's working against the cancer, he's willing do deal with it for now.

Arthur

Zytiga worked for me for 13 months....my PSA went from a 381 to a zero and stayed there below 1 for 13 months before slowly creeping up. The Xtandi however was only good for 3-4 months.

Cyclone,

Great news! Took me a month to show any result.

Just keep your eye on the liver function numbers.

Woot!! Woot!!

Frank and Lisa