Zytiga - Anyone using or used this chemo treatment?

I just started taking Zytiga today and want to know if anyone out there has any experience with this chemo treatment?  I am currently in the hospital on the rehab floor and just started tonight taking 3 Zytiga tablets.  I will also be starting Xofigo soon as well.  I just want to know how the Zytiga may affect me.  Thanks brothers.

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  • Good luck, I hope this helps. British site is very helpful

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    What Are the Potential Side Effects of ZYTIGA®(abiraterone acetate

    zytiga.com/about-zytiga/sid...

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    Also, this British site has lots of information:

    community.prostatecanceruk....

  • I've been in Zytiga since November  2014, starting just after Provenge. Prepare for labido to go below zero. I also have periods of mild to heavy fatigue lasting one evening to over a week. You will also be taking prednisone so watch for weight gain and rising blood sugars. It has worked well for me. 

  • Thank you for your feedback.  This helps me. 

  • Hi Jonlaco

    I've been on Abiraterone for 4.5 years, which I think is now longer than the initial trials. I have thorough blood tests every 4 weeks, just as o check liver function etc. 

    As I'm also on Zoladex , I get a double whammy! Total loss of libido, which isn't as bad as it sounds - you don't think about sex, so don't miss it. It's not like the torture of erectile disfunction where you're  gagging for it but can't perform!

    Emotions become a roller coaster, now I know how women work ( well nearly). Bouts of depression, lasting 1 or 2 days, feeling tearful, and let's not forget the Hot Flushes....

    After about 18 months, I began experiencing severe muscle weakness in my legs, which were already damaged by the cancer. I tried physio without success, but I believe others have had results. I'm now disabled in that I can't walk or stand for any length of time. The weakness has now spread to a lesser degree to my arms and hands.

    Weight gain has also been an issue, I've gained around 14 ponds around my midriff.

    On the positive side, the steroids have cleared my greasy skin and hair a treat. I only have to wash my hair every other day now. My skin is clearer too, in fact I look rather well for someone so I'll, which confuses everyone, I'm supposed to be bald and skeletal!

    The Abiraterone has been a great success as far as I'm concerned. My PSA of 600 is below 0.1 as of four weeks ago. 

    Good luck foot the future, stay positive and enjoy life.

    Martin

  • Martin, thank you for the feedback.  I am currently in a wheel chair as I have a tumor on my L3 which has taken my walking ability.  I try to enjoy life everyday but some days it is a real challenge.  I am currently in the hospital in the rehab unit to help me gain my strength up so I do not lose any more strength in my arms.  My transferring from my wheelchair to the bed, car, couch has slipped a bit and I need to keep working hard at keeping my strength up.  Thanks for your feedback, I too have a big belly.

  • I've been on Zytiga for almost 2 years. I take 4 pills. It brought my PSA from 160 down to 13. It's crawled back to 30, but there's nothing new on bone & CT scans. I'm having easy bruising from the prednisone, & what a nurse calls a prednisone fake beer belly. All in all, it's been a pleasure to get this extra time from a new, easy to take treatment. BTW, Zytiga is NOT CHEMO, it's a steroidal antiandrogen.

  • Neal-Snyder: Thank you for your experience with Zytiga.  I just started yesterday.  The bag that the zytiga came in had CHEMO written all over it.  The easy to take information gives me encouragement that I will have an easy time with this medication.  I am currently in the hospital in the rehab section to help me gain back some strength I have lost.  I am currently in a wheel chair as I have a tumor on my L3 and it has taken my walking.  I try and live life to the fullest everyday.  Thanks for your information.

  • I can certainly see why you thought it was chemo! It's absurd that they labeled it that way. Maybe it's because the only later stage treatments were chemo before they came up with these newer treatments that allow us to live longer & better. I like your attitude & hope you'll be able to walk again. I was in a wheelchair after a spinal cord compression. I got 4 weeks of physical & occupational therapy in a hospital rehab center, designed to help me walk again & to cope in the meantime, & was partly using a walker when I left. After I'd used the walker exclusively for some time, I moved on to crutches used as walking sticks. Finally, 9 months after the cord compression, I was able to walk on my own, & have been doing so for 4 years. Best of luck! 

  • Spinal cord compression caused by tumor pressing on the spinal cord? I had surgery on my L3 in September by December the tumor had grown back and that is when I lost my walking ability and ended up in a wheel chair.  I only hope that I can walk in the future as my cancer is pretty aggressive.  My gleason score is 9 and I had bone mets on my L3 when I was diagnosed.  I had my L3 radiated before having my surgery.  Neal thank you so much for sharing your story with me as it has given me some encouragement.  Where have you gotten treatments and who are your doctors?

  • I'm a Kaiser-Permanente member. My surgery was at Kaiser Oakland, which is Kaiser's Regional Spine Surgery Center (& luckily for me, our local Kaiser, where my wife took me when I was suddenly losing mobility). My radiation was also done there, but it was done a couple of months after the surgery. If you're still interested--if you're a Kaiser member now, or if you become a Kaiser member--I'll be glad to tell you the doctors' names. You'd have to be referred by your primary care physician (PCP) or oncologist. The radiation oncologist told me, maybe 10 years ago, that the same spot on the spine can only be radiated once, so if that's still true, that could be a problem for you. Perhaps it's still worth having the surgery again? My rehab was at Kaiser Vallejo, which is Kaiser's regional center for that. 

    I'm curious: why did they radiate first? Did they need to shrink the tumor before surgery, or what?

  • My tumor was radiated 2 years prior to my surgery on the spine.  My spine surgery was Sept. 30, 2015. 

  • I have only been on it for about three months, I take 4 pills.

    I've gained about 40 lb since I was diagnosed in 2013 so don't know if it will add more or not. But figure I'd rather be fat and alive than skinny and dead!

    Psa has come down a little, overall Side affects not bad. Have had a little more emotional episodes than before but nothing I can't get through.

    Best of luck to you.

  • Thank you for the input.  Thank goodness there are drugs that can help us out.  Best of luck to you Glsn 10. 

  • I have taken four 250mg Zytiga tablets every morning forover five years and it has reversed my tumor growth to where my tumors are either barely visible or gone. The only side effects I have experienced are some bone and joint pain initially, weight gain and sleeplessness due to the prednisone given with the Zytiga, increased blood pressure, lower potassium levels and within the last year I have started retaining fluid in my ankles.

    Good luck and May God Bless You on this journey.

  • Promising drug as you have demonstrated.  I hope it works as well for me.  Thank you.

  • Hey all, 

    This is not chemo related.

    I have to admit, I got a chuckle over the belly problem. Of course, it's probably the least of our worries, because it don't hurt. I started at 160 lbs., went to 208, settled in at 185. Pant size went from 32", to 38", and settled in at a plump 36". I'm 6" 3". I was skinny from the get go. When I was growing up, I always wondered what I would look like at 190 lbs., well I got there, and it isn't pretty. 

    Keep Well my Friends,

    Joe

  • I have been on Zytiga since October 2015 after receiving 3 Provenge treatments a few months before that.  Taking Zytiga has worked well to drop my PSA down to about .7  The most significant side effects that I have experienced has been fatigue which sometimes wipes me out for about a day or two.  Also weight gain has been a big problem for me, I have gained about 30 lbs.  I hope that I can get 5 or more years out of this treatment.  So far I have been pleased with the results that I have had.  Good luck everyone.

    Dennis  

  • Dennis,

    What was your PSA before Zytiga?  Did you take Xtandi previously?

  • I have never had a high PSA the highest I can remember is 3.5. The Oncologist said it is rare but sometimes PSA is not always effected by cancer. I have never had Xtandi.

    Dennis

  • I had been receiving Lupron injections for about 1 1/2 years when my PSA started to  jump up rapidly from .3ng/NL to 6.23 ng/NL.  Because of the PSA doubling time I qualified for both the Provenge and Zytiga. After doing the Provenge and Zytiga my PSA bounced around for a couple months before it dropped down.  I have been fortunate to have the PSA somewhat low although the cancer has metastasized to my bones.  My oncologist has indicated that studies have shown that these drugs will probably work longer because of the lower PSA.  Along with Zytiga I also get a Lupron injection every 4 months and a Xgeva injection once per month. 

  • I have been taking Abiraterone (Zytiga) for about 28 months.  I take 4 tablets daily.  I also have zoladex 3 monthly injections and I have had infusions of radium 223 (Xofigo) monthly for 6 months.  I have experienced no significant side effects except the expected hot flushes and loss of libido.  In this last respect my male bits and bobs have reduced from what I think was average to decidedly small.  But hey!, I'm alive and exceptionally fit and am living life to the full.  Lot's of holidays, running, gardening, restaurants etc etc.

    Best wishes,

    Niall

  • I take 4 tablets and have had no side effects. Also just finished Xofigo 6 treatments with no side effects. PSA is .02

  • Richardsmith: what is your gleason score, stage of cancer etc?  I am just curious about this and if you have had any other treatments as well.  Thanks for the input.

  • It was 8. I went to the Dattoli Cancer center in Sarasota Florida for 4 month of DART treatment along with Hormone treatment . The Nov - April this year oxfigo. I take Zitiga pills as well as a Xgiva shot every month. Dattoli lets no stone untuned. 

  • Good luck, sounds like you have a great team.  I am in So. Cal. and my oncologist is affiliated with St. Jude in Fullerton.  I have also consulted with Dr. Quinn at USC who is also working with my oncologist in Fullerton.  Thanks for your reply.

  • Good luck. God speed. 

  • Hi Jonlaco,

    I had what may be an unusual response to Zytiga.  I started with 4 pills after my PSA had zoomed up to 136 while on Lupron.  After 2 months, my PSA dropped to 50 - the good news.  But my energy level and stamina also made a big drop, and the 4 liver function tests went through the roof, so I had to stop the Zytiga.  The liver tests returned to normal in about 2 months, and I resumed the Zytiga with only 2 daily pills.  But the liver enzymes started to rise, and I stopped the Zytiga again.  I took a very brief course of Xtandi, about a week or so, but stopped that too, hoping to get some of my lost energy back - some did return, but not much.  In the meantime, my PSA continued down to a nadir of 12, and stayed around there for a couple of months, while off the meds - go figure.  When the PSA started rising, I went on Xtandi, and have been on it now for about a year and a half, keeping the PSA level for close to a year, but now it is rising again.  Energy level is on the low side, and I am easily fatigued, but I manage.

    I see that lots of men do well with Zytiga - good luck with your treatment,

    Les  

  • I am interested in how you are doing, so keep us up to date.

  • Jim: Unfortunately Jon passed away on 5-21-16. I am devastated but will trudge forward. Dena, Jon's wife

  • I am so sorry, yet thank heaven for help he gave others like me. He is missed.

  • Jonlaco, good luck. I read that many have had good results with zytiga. My husband did not. He had one of the very few allergic reactions to it. So if you notice a rash starting on your back and moving to your arms and legs with a temperature be sure to alert your doctor. I'm sure you will have great results as this is rare but it does happen and can be pretty serious.

    Wifeinjamul

  • Dena, I'm so sorry for your loss.

    Wifeinjamul

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