ZYTIGA: I really need anyone who is on... - Advanced Prostate...

Advanced Prostate Cancer

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ZYTIGA

BobChanin profile image
18 Replies

I really need anyone who is on Zytiga to share their experience with me. Thanks so much.

Bob Chanin

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BobChanin
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18 Replies
PaulC2 profile image
PaulC2

I've been on abiraterone(Zytiga) for several years now, most recently as monotherapy, because I did so poorly with side effects from leuprolide(Lupron).

Of course it suppresses testosterone, and I have the usual sequelae of nonexistent libido and decreased bone density. Surprisingly, however, I have none of the brain fog or depression I had with Lupron, and my drive and energy generally are quite good.

What else would you like to know?

PeterArtiste profile image
PeterArtiste in reply toPaulC2

Wow! Right on Paul. I am very happy that you have had that much time with Zytiga and feeling good. I was on it for two months before my cancer became immune to it. I was on Enzalutimide before that for 6 months and felt really good for about 2 and a half months before ol Freddy Cancer Kruger became immune once again. Now on my 5th chemo, Doxetaxcel, feeling much better! I also have Zolodex injection in stomach every 3 months, (like Lupron) and daily 10mg dosage of prednisone.

vandy69 profile image
vandy69

Hi Bob,

I took Zytiga (with prednisone) for 18 months before moving on to different therapies. As I am treated by Dr. Snuffy Myers, it was only one drug of many (Lupron, Casodex, Avodart, etc.) that I was taking along with Zytiga. I took in in the middle of the night when I woke up for a bathroom break because of the dosing rules about meals. Main side effect was from prolonged use of prednisone--puffy face. It is not cheap, but at the time I was covered by a commercial drug plan (not Medicare Part D) and got a tremendous discount from the drug's manufacturer. What other questions do you have?

charmander profile image
charmander

I've been on Zytiga and prednisone along with lupron and monthly shots of xgeva (for bone strength) for 14 months. I too take my dose in the middle of the night. I have not experienced any side effects until last couple of months. General laziness, harder to focus my brain and some periods of depression. Exercise, healthy diet (no dairy & meat) and living are essential. Another post somewhere talked about "not thinking about dying, because that's not living" really resonated with me. So now I focus on living. I remember when I first read the potential side effects I was scared that my life would be forever altered. None came to pass for me, however make sure your dentist knows about the zytiga if you have any dental work done. Good luck brother and keep your eyes on the horizon!

Dear Bob Chanin, I have been on Zytiga (+Prednisolone) since June 2015 so far I feel OK.

Consultjack profile image
Consultjack

Hi Bob, my name is Jack and I took Zytiga for a while and I took me off. I was getting too sick if you want more information please contact me at consult Jack at aol.com

Toiaubrey profile image
Toiaubrey

I have been using Ztiga for 2 years. The results are outstanding to say the least. PSA over 100 is now less than 1. I take 1000 mg a day. Although very expensive you can apply for copayment assistance. I beleive I am alive today with no issues related to prostate cancer solely due to Zytiga. I am 70 years old

John Coleman

MrJack profile image
MrJack

Hello Sir, Zytiga worked for me for two years, and it worked good, minimal side effects , tired, low energy, weight gain, foggy brain, etc.. had them all a little bit

zytiga just now stopped working and my psa is rising im at 18 now and will start with Xtandi next...

good luck to you,

Xtandi stopped working after 5 months PSA went from 5.8 to 59 ( I should have stopped sooner but was in the middle of lung surgery for 2 lung mets from colorectal cancer a secondary cancer caused by SRT in 2004......went onto Zytiga and in 30 days my PSA hit 259....so it was a total failure for me. I am now on taxotere and carboplatin...will be checking PSA in another week...just completed cycle 4.

maack1 profile image
maack1

I have been on/off ADT medications since 1996. When my PSA kept elevating despite Lupron, bicalutamide, and Avodart...and even when stopping bicalutamide,... it was obviously time to make a switch in meds so moved to Zytiga/abiraterone acetate with continued Lupron and Avodart in September 2011 when PSA reached 2.55ng/ml. PSA did steady drop to a nadir (lowest level) of 0.31ng/ml after 23 months. Since then and to now yet another 33 months (total 57 months) my PSA has continued a very slow but continuing rise to its most recent 0.943ng/ml. Thus, I have been very successful with Zytiga. Side effect, however, was an increase beyond that of Lupron and no testosterone additionally weakening of muscles and accompanying fatigue. Some of the fatigue for me also comes from my requiring the blood thinner warfarin with its own side effect of fatigue. So, with my success in PSA control, I support the prescribing of Zytiga when usual ADT meds are failing that control.

Concern is the cost of this med, though less than Xtandi/enzalutamide, and making sure Medicare or other health insurance covers most of its high cost.

Always available at maack1@cox.net theprostateadvocate.com

maack1 profile image
maack1 in reply tomaack1

I meant to add, I switched from the 5mg Prednisone twice a day to accompany Zytiga to dexamethasone at just one 0.5mg tablet daily after reading a paper where it was found this medication worked as good as prednisone. Also, I take the Zytiga upon rising since I had no food for the two hours preceding the medication while sleeping, then by the time I have washed up, shaved, and usual bathroom things after awakening the required hour of no food following the medication, I take the (in my case after switching from Prednisone) single daily 0.5mg dose of dexamethasone so done with that daily requirement.

DLWill profile image
DLWill in reply tomaack1

Thank you for the description on how you take your meds. very helpful.

YostConner profile image
YostConner

Bob,

I've been on Zytiga and prednisone for 19 months. I'm also still on eligard (Lupron). I work full time. I have some days when I have to stop working late in the afternoon or go to bed early at night, but most days I function OK. I have some brain fog. Mostly it affects what I think of as "instant memory." I can be down the hall and think of something I should do when I get back to my office, then I don't think about it again until hours later. Of course, the whole treatment adventure has caused plenty of side effects, but we learn to cope! Any specific questions?

dlestercarlson profile image
dlestercarlson

I have been on Zytiga, Lupron, Xgeva and prednisone since November 2015. About 2 months prior to that I had 3 Provenge treatments. At this point in time my current treatment has worked good for me. Probably the biggest side effect for me is the fatigue that I get frequently, no libido and weight gain. For the fatigue I try to get sufficient rest at night and generally take a short nap during the day. I also go the gym 5 days per week which has helped me focus better with my brain and I think also helps me increase my energy. With my insurance I found that if I went through mail order and got a 90 day supply at a time I my total co-pay for the 3 months was $200.00. I'm still working to reduce my weight since it has continued to increase which concerns me.

chascri profile image
chascri in reply todlestercarlson

I gained 70 pounds in about six months when I first went on ADT. I couldn't seem to lose it no matter what I tried. About three years ago , I switched to low carb eating (no potatoes, rice, pasta, bread, sweets,sugar) . I am now about five pounds below my pre-ADT weight. I try to keep my net carbs to under about 100 carbs per day. I used The Atkins Diet as a guide and find Atkins Products to be helpful. Good luck.

BobChanin profile image
BobChanin

I just want to thank everyone for their replies and helpful comments concerning Zytiga. I think I have done my treatment backwards as I began with radiation to any bone lesion that became painful. These included hip, sacrum, a number of ribs and vertebrae. I have also had radiation for a 18mm lesion in my cerebellum. (am told that is rare) Now I have decided to try Zytiga. I probably should have done that first, but we had decided to treat only for pain using radiation and narcotics.

Again thank you for your helpful comments and blessings to all.

Bob Chanin

Magnus1964 profile image
Magnus1964

I was on Zytiga plus low dose prednisone for 3 1/2 year before it stopped working. No real side affects and it took my PSA down below 2.0.

Cancersucks profile image
Cancersucks

On Zytiga/Prednisone for one month. Xtandi was a total failure so stopped after 4.5 months. Tolerating Zytiga better and the prednisone seems to help with back and hip pain (3 fractures from L1-3 and hundreds of tumors to bilateral hips according to last month's focused MRI). On very little narcotics currently. Mood lability is better on Zytiga and fatigue not as bad as Xtandi. Good luck.

Some oncs like to start with Xtandi before Zytiga....

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