well, Zytiga has run it's course and has stopped being effective, I am now going to start Xtandi, I had a good two year run on Zytiga, now I am going to start Xtandi in a few days, when it gets here, I hear it is expensive $$$, I have insurance that pays for 99% of the cost. this is the last pill for me, say's the Onc Doc, next stop after this is intravenous Chemo, then the grave, here I come, oh boy, fight fight fight!

41 Replies

  • There may be a couple more stops before you're done "circling the drain," as one guy put it. There are some new immunotherapies, so don't completely lose hope and give up.

    I'm a realist, and I didn't think that I'd reach my 68th birthday last week, but I'm still here. I've been on Xtandi for 22 months, the first dose being on July 31, 2014.

    So I've taken more than $140,000 worth of it, and it has kept the cancer mostly under control---which is priceless. And I realize that I'm coming near the end of the efficacy of the Xtandi, the average upper rate is about 18 months.

    Xtandi is a powerful drug, and has side effects which some guys can't tolerate.

    As with any cancer treatment, the intensity of the side effects varies from individual to individual. My medical oncologist suggested reducing the dose after just a month of treatment, but I stayed on the full 160 mg dose, which lowered my PSA to 0.90 within four months, the lowest it's ever been----I literally cried with joy.

    But it didn't remain there, it slowly went up in tiny amounts, and down a couple of times, but never went below 1 again. The last PSA was 4.20

    I had fatigue and insomnia plus loss of appetite as the strongest side effects from Xtandi. I personally don't know anyone else who's been on it longer than myself, so if you have any questions, please feel free to ask.


  • Thanks Eric, it is always good to hear your story, I believe you are right and I will be rechallenging with drugs that worked in the past as well as oral chemos such as cytozan that I have read studies on,I plan to give older therapies like DES a chance before I get off the train. My Oncologist says we are not that far out from a new ultra antiandrogen being approved similar but different than xtandi/zytiga. I have been through both and lately I have a slowly rising psa 58.7 and slight increase in both scans, riding the train and currently considering beating it down with a few rounds of taxotere. dx 2006 bpsa 148, Gleason 10 , stage 4.

  • I only got three months with it. I found the pills hard to swallow, large, I got one month out of the other drug. now on chemo, doing much better

  • Yes, the capsules are very large---almost the size of suppositories, and just a couple of weeks ago, I got the second and third caps stuck in my throat, requiring me to drink about a quart of water to dislodge them and force them down.

    But perhaps you should have tried the Xtandi longer---it took four months to bring my PSA down to the lowest point--0.90--that it was ever at, before or since. I literally burst into tears of joy, feeling like a reprieve had been granted.

    This month will complete two years on Xtandi, and my current PSA is 2.79, down from last month's 4.20 And I only have a couple of new mets--on the left femur and a small lesion in the bladder.

    I've been through a lot, though, having undergone a bilateral orchiectomy in November, 2015 and recently 20 radiation treatments to the prostate, which had a growth spurt, causing me a lot of pain---it was about the size of an apple, according to my radiation oncologist. I feel that the prostate's growth spurt was due to reducing the Xtandi dosage to 80 mg---the lowest dose, and have increased it back up to 120 mg now.

    Xtandi can have really intense side effects for some guys, and my own side effects were almost unbearable at times. But I'm glad that I stuck with it.

  • Thank You for sharing your experience

    I will keep that in mind and keep fighting too.


    Jack B.

  • Thank you,

    everyone's journey is different, it is definitely a tough fight.



  • Mrjack:

    I'm looking at Xtandi or Zytiga in my near future but the cost is a BIG concern. My insurance only covers 80 percent. On my pension, that's the same as not paying anything because I can't afford even the 20 percent. What insurance do you have that pays 99 percent?

  • Mrjack I am on Zytiga and I found out they have an assistance program, my insurance company pays 90% and Zytiga pick up the deductible leaving me with a co-pay of just $10, you might want to find out more about this program.

  • There are organizations like PAN ( patient access network ) that may be able to help you also. There should be someone that can help you find help at a local clinic or hospital. There is also PAF ( PATIENT ASSISTANCE FOUNDATION ) that could help. I have help with zytiga that costs $9,000.00 a month. Don't give up there is help out there.


  • @+mrjack

    "next stop after this is intravenous Chemo, then the grave"

    I hope it was not your OncoDoc that said that because if it was then he/she is not keeping up with all the latest in novel anti-androgen drugs,genomic based treatments ,etc. and as far as chemo goes your mileage may well vary from mine but the drug(s) are not as nasty as for breast CA.

    Then there are clinical trials Phase 3 type which is for treatments that already have shown benefit So maybe you could try to get a 2nd opinion from a true prostate oncologist or at least one who specialises exclusively in GU oncology

  • I was 62, Diagnosed Stage 4, Gleason 5+4, PSA 17.9 with bone metastases in my pelvis and vertebra in Aug 2012. I've been on Xtandi since week of Thanksgiving 2013. Fatigue, insomnia, weight gain, breast development are my side effects. My PSA got as low as 0.7 and stayed there until Jun 2015, then has started a climb for the past 12 months. PSA Doubling time is now 4.5 months, PSA now 0.73 and two new metastases on my vertebra. Will be undergoing a bone biopsy soon for analysis of possible alternatives, like PARP treatments, or other new drugs. Zytiga is one of the options, too, before chemo. Another option for you to try is a trial on Galeterone. Unfortunately, I had a side effect of uticaria and had to stop after 30 days. (Just prior to my start of Xtandi). Best of Luck.

  • I gave a talk to a prostate support group in Sydney last month. An attendee claimed he had been on Xtandi for 24 months with his PSA down to 0.1. I planned to talk to him at length after the session, but he left before I could catch up with him.

  • Familiar story Jack- I'm ahead of you by 6 docataxel (IV chemo) treatments in '15, 6 Jevtana (another IV chemo) this year and heading for 4 more Jevtana's starting in August- then't it's some clinical trials hopefully before re challenging my body on docataxel again- you're far from the grave my friend- I was diagnosed at stage IV with a normal PSA, go figure, back in March of 2008. Just a note- watch your blood pressure on Xtandi- I went through every advanced cancer med that's out there and tolerated all great- the Xtandi pushed my BP high enough for my first ambulance ride- the symptoms were there I just didn't pay attention, it didn't come all at once so not to worry there- just be aware of the BP- good luck, hang in there and stay positive.

    PS- I will turn 60 in October- been at this since 51- stay strong!

  • I was diagnosed at 41 four years ago with widespread LN metastasis and a PSA of 80. I have been thru early chemo, continuous forms of hormone therapy, and got about 18 months from zytiga before a PSA and met relapse. After early treatment and zytiga, my PSA bottomed at 1.0. I started xtandi on Dec 13 - 30 months now with a undetectable PSA and no evident metastasis. Xtandi is a great drug - shortly after we knew that xtandi was working, I also did Provenge, which I think helped in combination with continued Lupron, Avodart, Metformin, and xtandi.

  • Hi Paul, your post caught my eye as we have been on some of the same meds, i.e. ADT, avodart, Metf, but I just stopped Zytiga. My PSA is 25 and my scans are clear. Just getting ready to start Provenge (any tips?). Psa was an 8 in 2009 and had the robotic, then 39 rad treatments then adt for the last 4 years, had mets in my L5 area that healed. My Gleason was a 9. No chemo yet. That is great you have an undetectable PSA. Told my oncologist that I am somewhat anxious with the PSA 25. He told me "trust the scans". I had full bone,and CT of lung and abdomen. I did inquire about a PET scan and said it was not useful. Any questions of me, I am glad to help. Bill Irwin. P.S. I was treated with Dr. Myers in Va. but stopped. At the James Caner Center here in Cols. Ohio.

  • Hi

    I agree that there may be more after IV chemotherapy.

    First do not be surprised if Xtandi does not work well for you. It is fairly common that patients who fail Zytiga have a resistance to Xtandi. That was true in my case.

    Back to the point about the grave, while no one knows, there are other options. At the end of last year, I failed both Taxotere and Cabazitaxal. I am now taking an oral chemotherapy drug and seem to be holding my own. The drug that I am taking is not new and not widely used for prostate cancer but my oncologist was involved with research on it and put me on it. After this he has a clinical trial for me to try. My point is that there is more out there but you may have to look for it.

    You should also consider having your cancer genetically tested since there are some drugs available post chemotherapy that target certain types of cancer based on genetic traits

  • What oral chemo drug are you taking?

  • Is the oral chemo you are taking cytozan cyclophosphamide. I too am very interested in this as a future possibility. I have read some good studies by DR Glode. I am also interested in rechallenging with drugs like zytiga and xtandi. thanks for the info.

  • Yes Cytoxan 100 mg 21 day on 7 off. So far a nice PSA drop from 262 to 177. Scans done earlier this month show a mixed bag of some slight improvement and some slight progression.

    Pretty sure you need to fail chemotherapy before using. This drug has been around a long time and is used for many types of cancer. The oral version that I am taking is low dose. Blood counts are a bit low but nothing terrible at this point.

    There were some studies done several years ago with modest response rates. Nothing recently that I could find.

  • That would make sense that the insurance companies would want you to be on the standard of care q21 docetaxol chemo first and either not tolerate it or fail it, nonetheless Oral Cytozan is something else and that is an awesome response both psa wise and scan wise too as some slight up and down is what I would call relatively stable(stable is always good at this point) for an unknown,older, drug by many that seems to be lost in the shuffle, thanks for sharing, this could be useful to many of us.

    And for others with a higher side effect profile to docetaxol/taxotere there a lighter taxane based chemo called low dose taxol given every week 3 out of 4 weeks that may be easier to take, many guys in the old hormone refractory prostate cancer group were only on this, including Howard, and got years out of it. Howard was amazing in his endless research on different therapies for our disease.

  • I'm on Doxetaxcel, just did chemo number 5. I had a terrible reaction to the pre chemo drug, dexamethasone which sent me into the crazy zone, went by ambulance twice to hospital. now they give me iv Benadryl before the dex, then the chemo and I'm on ondancetrone for nausea, works like a charm, PSA going down, from 97 to 70, Gleason is 8. first diagnosed in 2000. 17 years still here! RRP in 2001, 35 radiation treatments in 2008, on Zolodex every 3 months still. Prednisone 10 mg a day. I use Ativan for the times I get panic attacks. I'm feeling optimistic I can get another year at least. :-)

  • Thank you for sharing

    keep up the good fight


  • I found the cost of zytiga and xtandi comparable, and when I was on xtandi from late 2014 until May 2015 I was offered a $20 copay coupon, since I was not yet on Medicare. Good luck! I'm on my second chemo drug at the moment and still feeling well despite a PSA over 2000.

  • Mr. Jack I'm in the same freaking boat!! My psa has been going up last 3 months. I've been on zytiga for about 14 months now. No one seems concerned about psa. I've read about Xtandi side effects and others experience with it and honestly I'm kinda scared. I don't think I'll try the chemo. Feeling the end approaching even faster than I had expected is becoming very hard to stay normal. No one wants to really hear a dying man's fears. They get bummed out, feel sorry and get uncomfortable. I mean who wants to hear my shit anyway. I've become more quiet about my situation. Even in Gildas club I'm like the worst case. I can tell I scare the other guys. It meant a lot for me to read your post. I haven't been checking this forum because it was getting me down. I live in New York state, where are you.

  • I am in SoCal,

    I am kind of sorry for coming off as so negative in my post after hearing you good men tell your stories, I guess I am just lashing out,

    I have Kaiser as my care provider, I will keep pushing on.

    thank you


  • Hey Charm, Lets chat. The chemo can be adjusted, they have great drugs that helped me so that I have no issues other than fatigue. I been here 17 years fighting, you can do this. talk to me .

  • I was on Zytiga/Prednisone for 2years. Lymph node on Ilicac Chain detected. Had SBRT. I believe that the Zytiga couldn't control cancer due to the high volume. After radiation had Provenge protocol and switched to Xtandi. Twenty four months later PSA still <0.01. Side effects as stated above. I've been able to tolerate. Excercise and good diet I've found to be essential. Patient Access Network (PAN) has covered my co-pays for all these years.

  • A quick web search shows Xtandi goes for around $9k a month. I'm waiting for approval from my insurance carrier. I have no clue as to what my co-pay will be.

    It seems that most of you have been put on some thing else before Xtandi or Zytiga. I have a very simple history, radiation, Lupron, and now Xtandi. I understand we all have different protocols, but is this aggressive? For those who don't know me, 6+ years in, Stage IV, a few mets, psa at 9. It doubled in about the last year or so.


  • Joe

    I have been in stage 4 with bone mets since 2011. That's when they found out I had cancer. I started out on Xgeva and taxotere for 6 months than I went to xofigo and Xgeva. After that I went on to take Xgeva, lupron and zytiga. I'm still on x,g,zytiga and will be until it stops working. My Gleason is 9 and my PSA never shows anything. I am an anomaly and PSA shows nothing.

    Don't give up Joe.


  • Right On! your doin good, that just proves what my Onc Doc say's " we are all different " and who knows how one person will react to the meds, I will not give up, thanks for the reply.

    carry on! fight on!


  • I was diagnosed with metastatic prostate cancer in March, 2014 and went on Lupron which kept my PSA undetectable for around 13 months before starting to rise. I entered a clinical trial thanks to my Kaiser Urologist/Oncologist in December 2015 and am now on Xtandi (free to trial participants) and Lupron. My PSA has been undetectable since the start of Xtandi and has remained so through this month, June 2016. The positives of Xtandi far outweigh the negatives - fatigue, loss of appetite and nausea at times. Exercise seems to help as does an afternoon nap.

    Don't let your oncologist feed you any crap. My oncologist attended the last PC conference in LA and is excited about some of the therapies and clinical trials coming down the line. She's very proactive and on top of what's going on. If your doctor is complacent and not specialized, look for another one.

    Kaiser is managed care. When I found out that my previous urologist wasn't managing my care, I finally figured out that I'm the one who needs to do the managing. That's when I switched to a oncologist/urologist who specializes in PC and is the top go to person within the Kaiser system on PC.

  • I have been on xtandi since august of 2013, after almost 2 years on zytiga. I have a current psa of 58 rising slowly, with slight increase on bone and lymph nodes for last scan, I am in no pain, I was diagnosed as a high gleason (10) stage 4 patient just over 10 years ago. I plan to rechallenge with things that have worked in the past ie xtandi, Zytiga, DES, Nilandron, . "If you are worried about dying , you can not live any more" For now you can expect a good long time on xtandi. By that time their will be new therapies. and who knows you may do very well with xtandi and you may do very well with chemo, there is also Javenta which is a new chemo to use after taxotere. as others have said there are clinical trials and other therapies that worked in the past in particular an oral chemo known as cytozan, you can use google scholar and bring up a paper by Dr. Mike Glode verifying the success of this agent. Plan on living and beating this thing , because you might just do that. I myself may be starting chemo tomorrow, and I do not plan to die anytime soon.

  • Right On! I like your attitude and optimism!

    that's what I like to hear,


    Good luck to you sir, and don't forget to listen to your own advise.


  • Mrjack et al, having this disease can be a lonely place. It's hard to communicate the depth of our fears, concerns and options to our families/ close friends. However forums like this help. Personally, I've been involved in an USTOO chapter that meets twice monthly; one of the meetings include a video conference call with a Dr. Weber.

    I find the face to face meetings with guys that have metastatic PC to be positive, helpful, educational and most of all a feeling that I am not alone and am with people that understand.

  • hi, thanks for your input, I would like to attend a meeting with guys like me but those meetings don't exist around here, they do have a meeting at my hospital but it is very poorly ran, the doctors come in and talk at you for hours about how wonderful there life is, the house in Hawaii etcc, and no one wants to hear from me, the failure that does not respond to treatment, they only want to hear from the lucky winners

    and not the loosers like me.

  • Are you in the LA area?

  • I am a 60 year old man, diagnosed in Nov 2010, went stage 4 in Feb 2013. I have many bone mets; pelvis, spine, ribs, sternum, skull, well you get the picture.

    I was on Xtandi for 18 months before it gave out. But I was also given Xofigo in conjunction with the Xtandi. Xtandi was started in Nov 2014. Xofigo was started in April, 2015 and was finished in Sept. 2015 (six month treatment). During that time, my PSA dropped to a low of 2.08. My cancer did not advance in 2015.

    The Xofigo played hell with me especially toward the end when I lost my appetite, was nauseous all the time and extremely exhausted. When it ended, my PSA began a slow rise each month until it reached 8.7. My cancer does not need a high PSA number to grow. A subsequent CT/bone scan showed a new spot on a cervical vertebra and on my left femur. Due to this, I was changed over to Zytiga with Prednisone.

    Shortly after starting my new regimen, my wife and I went on a 5 week road trip. I had to deal with a terribly dry mouth with metallic taste. I still could not eat and have finally leveled off after losing 50 lbs. I now weigh 155 lb. When I returned and had my blood tested, my PSA had gone up to 13.77 and I had a high blood sugar count which I have never had before.

    So how do I approach the continued use of Zytiga? I have an appointment with my oncologist on July 7th. I called today and asked if we could have another blood test done before the next appointment so we will have a bit more information available to see if the Zytiga is being effective at all.

    I have already done all the new drugs out there, Provenge, Xtandi, Xofigo, and Zytiga. I am still on Lupron. Casodex was done early on as was the drug DES. I now am on constant pain meds; Fentanyl 75 mcg with oxycodone 30 mg for breakout and it is becoming less effective.

    I must admit fear has become a real issue. I question how much am I willing to give up when it comes to quality life for added life that will be numbered in days. I am not one who is going to grab at every straw with the hope it will become the miracle I will need if I expect to live a long life.

  • Thank you sir for sharing, honesty is what I need to hear, it is interesting how many different ways there are, how many different paths there are to use these drugs, and we are all different, the doctors must be learning what works and what doesn't, and they should be getting better at it.

    what we want is a cure not more treatments, we want a cure.


  • I was on Zytiga for 3 1/2 years before it stop working. I am now on xtandi. My doctor has already mention some up coming trails that I my be eligible for. I have avoided chemo for 24 years and hope never to take it. My advise, watch for new clinical trials.

  • Started Xtandi in January but failed quickly as PSA went from 30 to 160 during the four months taking it. Side effects were intense, specifically emotional lability and fatigue. Now on Zytiga which is well tolerated. Diagnosed 04/15 with such bad bone marrow invasion, only given 6 months to live at 44 yo.

    Have done early docetaxel, Provenge, Flutamide, Xgeva and continuous Lupron. Xofigo will be started this week unless change mind. Depressing story but still feel the need to share and commiserate with others with highly aggressive and resistant to treatment PC.

  • Wow, thanks for sharing , I had a good two year run with Zytiga, I hope it works for you, but it finally stopped being effective three months ago and now I have just started Xtandi, I hope to get another two year run with it, but I am having more severe side effects than with zytiga, so I am not real happy so far, I will take another blood/psa test in two weeks and see what's going on, God Bless you, thank you sir.

    Peace to you


    Jack Bishop

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