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Advanced Prostate Cancer
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Zytiga, Prednisone, Lupron

My Oncologist is now prescribing daily 1000 mg of Zytiga, 5 mg Prednisone along with my every 3rd month of Lupron. Was on daily 50 mg Casodex after 6 infusions of chemo. Had my 3rd Lupron injection today. My past posts pretty much tell my beginnings. Can anyone tell me what I am in for?

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My Lupron shots really hurt, like for four days.

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The needle is quite large. It holds alot. Therefore the pain. Had mine today. It'll hurt for a few days

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It sounds like to me that you have a good combo going on there. It’s a recommended combo. I never had a hemroid until near the end of 8 was RT. I had a hemroid so big and painful that I couldn’t sit down or find any relief until Dr gave me a salve that knocked that sucker out in a few days. I really didn’t know at that time if I could do that for long. I think that the chemo symptoms and the pains will subside in time. Praying for you to get to no pain zone soon..

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what was the salve for hemroids...my wife's girlfriend has bad hemroids

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Wise women herbals suppositories #2. 12 per . I still have six left from 21/2 yrs ago . Thank god ive never needed them again. It took that giant out . Never to return. Hope she has the same results. Homeopathic...

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I had 3 hemorrhoids and my doctor put a rubber band around each one to "seal" it, I guess. No pain, took about 20 seconds to perform in his office. Amazing. If I knew how painless it was, I would have done it years ago. I don't know the name of the procedure but I can find out if you like. The do one hemorrhoid at each visit. I'm not exaggerating how fast the doctor does it. Now no blood so far. Good luck

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Just wanted to thank you for your posts on my behalf. The feed back I get from everyone means everything to me.

Ralph

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Maybe we can figure some of this stuff out together.. Take it easy!

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Sorry for the issues you have had to deal with. After 6 rounds of chemo with Lupron, my PSA went to 0. PSA started to rise, and when it reached 1.8 my MO added Zytiga and prednisone. PSA went back to undetectable.

My point is you appear to be on a good treatment regiment. It’s really working for me. I hope this new addition of medication does the trick and helps you significantly!

The Zytiga has not give me any side effects except a bit more fatigue. Prednisone occasionally gives me an occular migraine headache, but not that big a deal either. Lupron, of course, causes hot flashes...but that also shows it’s working. It also causes muscle loss, as I’m sure you know.

Make sure you exercise - even if it’s just walking daily. And light weights if you are able. Exercise helps combat fatigue and muscle loss.

We are all pulling for you. Please keep us posted.

James

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Thank you James for your reply. Your post almost resembles me. You give me hope and I really do thank you.

Ralph

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I have been on the same treatment regiment since Nov17. The only side effect so far has been a very marginal fatigue that seems to disappear with my exercise routine.

Taking Zytiga in the first two weeks raised my liver enzyme numbers. I stopped for two weeks, and scaled my way back into the 1000mg dose and all seem to be fine now.

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Thanks for your reply. I start my Zytiga treatment next week. It is a struggle for me emotionally and physically. But I have to bring myself to accept what is and try the best I can.

Ralph

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Anxiety is quite normal. I was the same way. Stay positive and active and it'll help a great deal.

As a side note, look into Metformin+Statin posts on this forum. Here's the latest from ASCO 2018 that I think Patrick had forwarded to us as well last month:

urotoday.com/conference-hig...

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I'm reading this older post of yours. I was on 1000mg, scaled back to 750mg and had to stop again because of toxicity. I'm waiting for liver function to recover. Its been 1 1/2 months since stopping. Don't know if my MO will reduce it again or stop it altogether. Are you still at 1000mg? And liver function normal?

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Are you talking about Zytiga?

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Yes, I'm talking about Zytiga, not sure if I'll ever be on it again once the liver recovers.

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I went back on after a month. Started with 250 and increased it by 250 every week till full dose.

There’s been a study that showed people who initially have the high liver enzyme reaction to Zytiga tend to do better.

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Thank you for your experience. I'll discuss that with my MO if he intends to put me back on it after the liver recovers. 250mg a week, moving it up and test it weekly.

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My Oncologist took me off of Zytiga after two months. It wasn't working for me. I'm on a clinical trial now that the side effects have been debilitating to say the least. It seems to be working for me, but quality of life is none. Yes liver enzymes can escalate with Zytiga. Hope there is another treatment for you.

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I am on both Lupron for about a year before they added Zytiga (with 5mg prednisone). There are a lot of side effects, but most are more of a nusance. From the Lupron there was muscle loss and fat gain, joint pain, major fatigue and fuzzy thinking. I lost most of the hair on my body, but it got thicker on the top of my head. The biggest issue deals with vanity. I am getting noticeable breasts. I did not notice anything major then they added Zytiga. Being on 5 mg of prednisone instead of the traditional 10 mg is becoming more common and helps minimize its side effects. You should get monthly blood work, especially on Zytiga and prednisone.

Like I said, the side effects are a pain but not that bad. I was able to put 1000 miles on my bike and go on two Caribbean scuba trips last year. I put on about 25 pounds, but I am fighting it with exercise and diet.

Good luck!

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Thank you for your reply. Did you first go on casodex as well as chemo before what you are taking now? Also, when were you first diagnosed? You sure do give me hope and I do thank you.

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No my treatment plan was different. I have a rare type of prostate cancer (Ductal) that is hard to treat or even detect. When they found it, at the beginning of 2016, the cancer was advanced, Stage 4A, T3N1 and had spread to the pelvic area. I had surgery where they also removed 14 lymph nodes, one of the nodes being “100%” cancer, 38 rounds of radiation and Lupron with Zytiga. I have to go in four times a year for scans as at least 30% of the cancer does not produce PSA. (I am trying to get that to be twice a year.)

For now, no Chemotherapy. There is some literature that states Ductal does not respond that well to chemo.

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I have similar issues, my PSA never settled during chemo, finally ending at 1.0 at the end of chemo only to go up to 6.71 at my 100 day follow up which my MO put me on Zytiga immediately. I have now been on Zytiga for two weeks and get tested next week to see if it has had results. My MO kept telling me Zytiga was in my future so in fear of what I read taking both Lupron and Zytiga together, I opted for an orchiectomy which was the best decision I ever made, no more Lupron! I really can't feel any side effects from the Zytiga. As Dr Who says, get exercise, as hard as it is, it will help, I use a stationary bike and walking. One drug that one of my doctors put me on was venlafaxine 37.5 mg which she told me would help with the fatigue and boost my frame of mind which I'd say has really helped. Sounds like you may be going through some of the same issues of life I'm going through not knowing what your future holds and the venlafaxine has given me a better attitude about myself and this experience.

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Thanks for your reply. I would like to know more about the orchiectomy. I had my Lupron shot two days ago. Still feels like I got kicked by a mule in my bum. Also the fatigue and hot sweats that come with it. Start my Zytiga and prednisone next week. Hope for the best.

Ralph

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I had the fatigue and still have it, no where nearly as bad, but I don't have the hot flashes anymore. They may return with the Zytiga, two weeks in, not so far. I took two shots lupron and was finishing up the chemo and my PSA was all over the place in the 1's. My MO had mentioned surgical castration in the very beginning and I asked again, he said, "I'll tell you what, I won't try and talk you out of it", we wouldn't have to worry if the lupron is 100% effective and no side effects. If you can put aside the sexual and mental state of it, it's an easier life! After 6 months of lupron, everything had shrunk down to peanut size m&m's so they weren't any fun to scratch any more, life goes on. I hobbled around for a weekend and within a week I was fine, only had to watch it getting up and down. Good luck to you.

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Orchiectomy made sense for me like you. The one decision that has really helped.

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I tried and tried to find clinical trial reports on Lupron success and never really found what I considered something that stated a percentage of success. It seemed as if the drug didn't work on a patient, or didn't achieve the results they were looking for, the patient was kicked out of the trial. The trial would show how many men started the trial and then showed how many completed the trial and it would be about 80%, so my thinking is it doesn't work on everyone 100%. My MO wouldn't touch my argument, but didn't argue my decision for surgery either, so it made sense to me since it didn't appear to be working for me during chemo. But now, it appears the surgery wasn't the solution either, lets hope Zytiga is. I'm off to MD Anderson Houston today for a second opinion in hopes for a clinical trial.

Good luck to all.

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Best of luck. Trials are good because they test you thouroughly. We are all playing hop scotch with APC. Doing your best is all any of us can do. Pray , pray , pray,

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my husband got the longest ride out of zytiga and prednisone. about 5 years on casodex, 6 on zytiga, and only one on Xtandi.

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That’s great....

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God bless him. Gives me hope.

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No appreciable side effects from zytiga. Psa never got below 3 now trending up after two years. Next steps to be decided next week

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Please keep us informed next week. I'm anxious to know your update and the next steps.

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Hi I was diagnosed Gleason 9 metastic to lymph nodes up into the chest. I’m on Zoladex implant with Zytiga and Pred. I am still able to function normally, I occasionally feel fatigue but I try to stay active. It is easy to put on weight so I watch my diet and walk miles with my dog. I have had some muscle wastage but I counteract this with weight bearing exercise. I get a little more emotional than before but it’s all manageable. It can effect potassium levels so I try to eat a banana a day. It effects everyone in a different way but I’ve had no liver issues etc. I hope you tolerate it well. Keep us up to date. 👍

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Thanks for your reply. I will keep everyone up to date.

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I get a Zolodex injection every 3 months in the gut area. The needle is quite large and it hurts for about 1 day. Zolodex is a medicine called "goserline" it works by reducing the amount of Testosterone the body produces. I also am on 1000 mg of Zytiga Tablets a day plus two 5 mg of Prednisone tablets daily. The Zytiga works along with the Zolodex to keep you P.S.A. level down. This is all after 21 weeks of Chemo Therapy, that was injected every 3 weeks for a total of 7 infusions that took about 4 hours each. If your P.S.A. is way down so is your ability to have an erection.

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Can I ask when you were diagnosed and your age? You've been through just about everything I have. I start the Zytiga Prednisone treatment next week.

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I was diagnosed in 2011, I am 72 years of age

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I'm on the same regime as you. Lupron for around a year now, Zytiga and Prednisone (5mg) since November, plus Xgeva monthly for the bone mets. I'm sure I'm lucky, but it's working great for me. PSA down to 0.6 and still falling, scans showing everything being held in check, blood tests look fine. I get hot flashes from Lupron of course but they are much better now than when I started and I've got used to them. Mild soreness for a couple of days after the injection. Other than that it's just minor fatigue on some days. Life/Work is going on completely as normal and I feel great the vast majority of the time.

So if I was you I'd feel great you are going in this direction because it seems to do the job with little drama.

Good luck and I hope it works for you too.

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If you don't mind me asking. Did you take chemo and how was your PSA before you started taking Zytiga? Sounds like its working for you, I've just started Zytiga for 2 weeks hoping for my PSA to settle down and go down.

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I don't mind you asking at all. I never had chemo. Diagnosed Gleeson 9, PSA 40 (Sept 16) but localized (we hoped) so started with surgery (Oct 16), then Lupron (Jan 16), then PSA rose so 37 days of radiation of the prostate bed (July/August 17). Unfortunately the cat was out of the bag and PSA rose again to 9, then we discovered bone mets (Nov 17). So then the Zytiga started.

I'm sure chemo is in my future at some point but at the moment the Zytiga is working for me.

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Thank you for your reply. I read your bio, and you said you had surgery also. Was it a prostate removal? I'm glad you are feeling great most of the time. I hope I can also eventually get to that feeling again. If you can avoid chemotherapy. Do so. It is a horrible debilitating treatment. It's sounds like your Zytiga treatment is working for you. I hope it works for me as well.

God bless you Paul,

Ralph

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I had the orchiectomy ,Radiation and Adt. I’m thrilled to dodge chemo so far. I was on Lupron and Tak 700 after orch no more Lupron but I’m on Tak til failure. I will have my yearly scans and results back by 4-9 so I’ll let you know. I feel good compared to even several months ago . But once chemically challenged and altered ...I don’t think that we will ever feel completely normal again . I feel like a human Petri dish . Better a live Guinie pig then a dead duck.

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Glad you are doing well-Presently on Firmagon but may change to your treatment In couple months. Firmagon did bring my PSA down from 550 to 19 in four months. Will check again in two weeks. Best to you.

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Thanks Ralph. Yes it was prostate removal via robot. It was a relatively minor event compared to the Whipple I had ten years ago although recovering urinary control took a long time and included physical therapy. It's still work in progress to a small extent.

I appreciate the comments on chemo. These trade-off decisions are hard for all of us, but my Oncologist at Stanford was firm in her advice that Zytiga would be as least as effective as chemo would be and the side effects would be a order of magnitude lower. That had a major impact on my decision.

I hope you get to feeling well soon. I remember with my Whipple recovery years ago the recovery was brutal mentally and physically. I just kept pushing and hoping, and one day I realized I was feeling near normal. So keep pushing man..you'll get there.

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Very good encouraging words. ..

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