Aberaterone Losing Effect - What Next?

Hello everyone. My husband and I have joined this forum because of my husband's illness. He has advanced prostate cancer with mets all over his body but no pain and the PSA is at 11 at the moment. He was diagnosed in 2003 and was on different hormone therapies for many years until his PSA shot up to 250 three years ago. He was then put on Aberaterone, which brought the PSA down to under 1. But it has started to go up again and we are now faced with the question: What to do next? Just wait and, should he be in pain ever, treat him with Chemotherapy? Come off the Aberaterone for a while and go back on it again to see if that has any effect? Or try Chemotherapy straight away? We would be very grateful if you could share your experience/your opinion with us. Best wishes, Mel and Paul.

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  • Mel and Paul, I am in my 28th month on aberaterone and have a rising PSA (currently 17.4). Bone pain from mets is limited. The difference is I seem to have fewer mets. I face this question every three months. So far, my oncologist and I have decided to stay the course. One possible next step is megadoses of testosterone before chemo. What has your oncologist recommended?

    *typo corrected

  • Hi there.

    When we saw Paul's oncologist last Tuesday, he said he wouldn't want to start Paul on Chemotherapy straight away. When we told him about a therapy that we have recently heard of and read about that is currently tested in Germany, he encouraged us to find out more about it and we will have our next appointment with him in three weeks.

    During this meeting with the doctor last Tuesday, Paul was still very much against Chemotherapy, but when we got home and watched a couple of videos on Chemotherapy and possible side-effects on the website of the Irish Cancer Society, he changed his mind a little and is now saying that it would be an option after all.

    The trouble with this therapy in Germany, LU-117, is that not much research has been done yet and current studies show that of 145 men on whom it has been used 40 % show a reduction of the PSA by 50 %. The therapy is very expensive, almost 20,000 Euro!

    So I think what we will do is go back to the oncologist and tell him everything we have found out about LU-117 and then discuss our options with him again. He will say again that it is Paul's decision, but it is not that easy. That why we have decided to join this forum to hear as much as possible about what others in our situation or similar situation do.

    Thank you.

  • Hi Yost, my PSA dropped from 26.6 to 0.58 in first two weeks of Abiraterone. Now 0.06.

    Was metastic bones about 30+ when dxd Nov 14. Only Zoladex to Nov 15 then chemo for 8 months from Dec with Zoladex. 5 months then only Zoladex. Zytiga Sept 16. My assumption is that chemo beat up the PCA and Abiraterone completed because my MRI and nuclear bones scans showed almost complete departure of mets. No new soft tissue mets either. How are your mets? Did you have chemo? Just trying to see if I can attribute disappearing mets to chemo + Abiraterone or solely to Abiraterone. David

  • I have not had chemo. I did Provenge aBout two months before I started Zytiga. My November 2014 bone scan showed about 18 mets sites. My most recent bone scan showed some improvement. My November 2014 CT suggested a little inflammation, but no soft tissue mets. No CT scans since. I have new bone and CT scans sceduled for late May.

  • YostConner... who is your Oncologist. I am currently under care of doc at Memorial Sloan Kettering. They are not doing anything with mega doses of testosterone and/or any other conjuctive therapies.

  • Dr. Michael Carducci at Johns Hopkins.

  • Thank you.

  • Melanie and Paul,

    I don't know what would be best for Paul's situation. My inexpert observation is that nobody knows for sure what will work for any given patient. Some guys get chemotherapy and get no benefit at all, then someone else gets it and his PSA drops to below 1 and stays there for a year. The same goes for other treatments. Given that situation, I'm inclined to think that it's necessary for a doctor to experiment - try something, monitor the results closely, and if it's not working, try something else.

    Some drugs that can be tried are docetaxel, Jevtana, xtandi, metformin, ketoconazole, estrogen, leukine, Provenge, checkpoint inhibitors, and maybe some others. Genetic profiling might help to eliminate some of these without having to try them, or might give a clue that a particular drug or drug combination looks particularly promising.

    Sometimes treatment with one drug might cause another drug that had already failed in the past to start working again. As you have hinted in your posting, Zytiga is sometimes like that.

    So what should a patient do? Figuring out all the options for yourself is an almost impossible task. Unless one of you is an oncologist or molecular biologist, you won't have any way to know what the possible drugs are, how they work, what combinations make sense, what doses make sense, what order to try them, or what side effects or contraindications should steer you away from them.

    Given all that, it seems to me that, when the standard options start to fail, as they have for Paul, the thing to do is to find the best medical oncologist / advanced prostate cancer specialist available to you to get help. If your current doctor is inexperienced with the newer or less common options (e.g., metformin, ketoconazole, leukine, immunotherapies), maybe you can find one who can take it from there. There are some famous ones like Drs. Myers, Scholz, and others. Most of those guys work in group practices where there are multiple oncologists all specializing in advanced prostate cancer, and there are also doctors working at teaching and research hospitals who are knowledgeable about the latest stuff. One list of such hospitals in the U.S. can be found here:

    cancer.gov/research/nci-rol...

    or here:

    cancer.net/navigating-cance...

    A lot of patients want to try hard to extend life and are willing to accept the risks and side effects of trying different treatments. If you feel that way, say so to your doctor. Mention the different drugs that I've listed and ask whether he has ever personally treated patients with them and what he thinks about trying them. If he's uncomfortable trying drugs he's never tried before - that's understandable. He has been taught "First, do no harm", and it's possible for a doctor to do a lot of harm giving drugs to patients that he, the doctor, has no knowledge or experience with. That's okay. That's not the sign of a bad doctor, but it may be a sign that a more advanced specialist might be worth consulting if you can find one.

    I wish you the best of luck.

    Alan

  • Hi Alan.

    Thank you so so much for taking the time to write such a long post with so much really valuable information.

    I will go over your post a couple of times and make sure that I take note of all the drug names and the two links to lists of hospitals in the US as well as of the names of the specialists you mention. This is all such valuable information.

    The doctors here at Saint Luke's Hospital in Dublin have done a lot for Paul, but I do think that now is a crucial time where we all have to come together to see what is best now and where to go from here, and if it means finding somebody abroad then this is so.

    This is a very difficult time right now because, as you say, unless you are an oncologist or at least doctor yourself, it is so difficult to make any kind of well informed decision, and the doctors we have been working with so far are certainly good in their field but maybe now we need something else and the question is what.

    As you say, maybe a good point to start is to introduce all the information you have mentioned to our current doctor and to also look into everything ourselves.

    That's all I can say for now. Thank you so much again!

  • This is what makes prostate cancer so difficult to deal with. So many choices. So many things to learn about in the way of treatments and medications. Add to that the obligation of deciding on the best doctors to go with. Best of luck. I am early in my journey.

  • I am not a medic but I would go for chemo immediately. The world's largest prostate cancer trial, Stampede, is still running BUT results to date show that hitting our damn cancer early and hard is producing startling results. I would not go on the trial not from fear but from a difference of opinion with the professor. My Oncologist was essentially a lead who set up the trial and I am benefitting from its ongoing results. 1 Zoladex implant for 11 months till PSA not dropping (already from 200 to 2.0 but rising again). 10 cycles of chemo still with Zoladex. After 10 cycles only Zoladex for 5 months rising to 26.6. Now from Sept 2016 Zytiga and Zoladex with PSA in week 2 dropping to 0.58. Now 6 months later 0.06 PSA. They keep me on this until PSA rises to 5.0 when either different chemo or Enzalutemide still with Zoladex. Google Stampede Clinical Trial. And stop worrying because we're all different and the men and women on this site are great. I have been helped tremendously. David

  • Hi David.

    Thank you for your reply.

    Well, it is difficult to stop worrying at the moment. Of course it is a worrying situation.

    I take into account what you say and my husband will read all the posts later today.

    I am just wondering: If you treat the body with Chemotherapy, and if it is a high dose to, as you say, fight the cancer hard, is that not very hard on the rest of the body as well? Okay, most side-effects seem to lessen once the treatment is over, but I believe the body is still a lot weaker than before.

    Thanks.

  • There is essentially a baseline on weight and age for some chemos. The idea now is to use chemo early not late in the treatment cycle with other treatments at same time. All of us respond differently to treatments. I asked for more after 10 cycles but was refused. My side effects essentially nil but it was explained to me that my body needed a rest - 5 months break from chemo - or I could die from the treatment. So I stopped and moved to Zytiga after the break. Zytiga Great.

  • David, when you talk about early chemo, it makes me think you're not in the same situation as Paul in Dublin, who was diagnosed 14 years ago. When were you diagnosed? What treatments did you have before you got in the Stampede trial? As you may know, the guys here who were diagnosed a long time ago were not offered the option of early chemo. So when chemo comes up for us isn't until a late stage, unless perhaps in a clinical trial.

    Neal

  • Hi Neal

    If you see my earlier response to MelaniePaul you'll note that I refused to go on the trial but my Onco was/is the lead. I was dxd Oct 2014 with incurable metastatic. Some 30+ bone mets and pelvic girdle lymphs all debateable. Could not have radio as amount required to kill mets would kill me first. Chemo not an option as too expensive in UK. Zoladex obviously which I am still on in year 3. First symptoms I noted Oct 2014 and Uro plus Onco told me I had PCa for at least 3 years hence mets spread. My chemo patent expired 2015 so released in UK for treatment. 10 cycles started 10 months after Zoladex Jan 15.

    I know both Stampede and Chaarted trials. Results show hit ca. early and hard. A change from the drip feed of earlier treatments. Dsvid

  • David, it sounds like you were in the right place at the right time having the onco you have!

    I wanted to agree with your comment about the men & women on this site being great. They have helped me tremendously too!

    Neal

  • Mel & Paul,

    You're in Dublin, IRELAND, right? Maybe you've never even heard of Dublin, California. Don't feel bad. Probably most of the people in CALIFORNIA haven't heard of it. I live about 15 miles from there.

    I was also diagnosed in 2003, & I'm also on abiraterone acetate (AA). I was put on it in July 2014 after my PSA shot up to 160. I never got down as low as Paul--my low was 13. Now I'm at 47. My med onc isn't concerned about the PSA numbers, at least under 100. He's concerned about whether I'm showing anything new, any progression, on my quarterly bone scans & CT scans.

    Questions:

    1. Has Paul already had Xtandi? It's something like AA. Xtandi works for 35% of the men who've had AA first.

    2. Has Paul had Provenge? Provenge is an immunotherapy.

    3. Has Paul had Radium 223 (Xofigo)? If not, maybe that's because he's not in pain yet. As you may know, it might do a lot for his mets.

    4. Is Paul having scans fairly often? Do they show that he's getting any new mets any time recently?

    5. Has Paul tried taking his AA closer to when he has a meal? It's stronger that way, which means it might be more effective, but it also might be more damaging. I was already having liver function tests every 30 days, so (with my med onc's knowledge, if not support) I've been moving pill time closer to dinner, to try to get a longer ride out of AA. So far the liver numbers have stayed good.

    6. Is Paul taking Metformin? It is, I believe, the most common Type 2 diabetes drug. Because so many men take it, they've figured out that men who take it seem to do better against PCa than men who don't. It's an inexpensive drug. There have been some studies reported on this site by Patrick O'Shea, M.D.--just use the search box at the upper right & search for Metformin. My PSA did dip when I started taking it, so I'm still taking it--100 mg with breakfast & with dinner. This isn't like your big next drug or anything. It's more like something that could extend your time on AA or other treatments.

    They weren't offering early chemo when Paul & I were diagnosed, so that's not an option for us. When it comes to later stage chemo, I've read that it's a lot more targeted to PCa cells than it used to be. Even so, my thought, & I'm not a doctor or scientist, is that we don't move on to chemo until we've exhausted the other options, getting as much mileage as we can out of AA & the things I've listed.

    I look forward to hearing back, Mel, & best of luck to you both

    Neal

  • I will just add that I was dxd diabetic T2 in 1991 so Metformin has been part of my daily life since then, may explain why Zytiga seems to have had what I think is an amazing current response. Against that my diabetes under great pressure as Zytiga + Zoladex completely mess up diabetic drug responses. Blood glucose too high, eyes tested last week for retinopathy problems (not good result) and have to return next week. And neuropathy from chemo hijacked by diabetes. Thankfully I feel at least 90% healthy. David

  • Lotta tough stuff, David. 90% is GREAT, good for you! I have something similar to neuropathy, in fact that's what doctors called it until I saw a neurologist. I had a PCa tumor cause a spinal cord compression. Spinal cord surgery, wheelchair, learn to walk all over again. The neurologist called the feeling in my feet & ankles central pain syndrome, because it comes from the central nervous system. I take a max dose of gabapentin (neurontin), 900 mg 4 times a day. It helps, but I could use more help. The neurologist has tried everything he can think of, but nothing has given me added relief on top of the gabapentin. I don't suppose you happen to be in this situation & your doctors DID come up with a drug that helps you, by any chance? Thanks.

    Neal

  • Sorry to hear that Neal. Given my original bone mets were both hips, like you spinal cord (multi) , ribs off spine and chest I was a candidate for compression. Still have stiff legs with my neuropathy but seem to be out of the wood. Both scapulae too because they come off the spinal cord. But now virtually nothing

    Latest scans also showed liver, heart, kidneys and lungs all OK. No soft tissue mets above the diaphragm. And yes, I was fortunate to be in the right place at.....! I do pray for everyone suffering. As I said my turn will come but I am a cheerful bugger. God bless us all. David

  • Only drugs they mentioned are those used for end of menstruation BUT I have found that in Germany Docs prescribe Alpha-Lipoic Acid for diabetic patients who have severe peripheral neuropathy. Seems many now using it for chemo neuropathy etc. Look at University of Maryland, I think its the only published medical results. And it works.

  • Hi David.

    That is a lot to cope with, David. But good that you seem to feel over all positive.

    I understand what you say about hitting the cancer early and hard. The only thing is, as Neal pointed out already, that early Chemo wasn't offered until recently and, even if it was, you would still have to decide whether you want to put the body under so much stress or whether it is better to try other options first. Because: We have all heard of cases where people have tried to hit the cancer early and hard and, although the cancer went, those people were wrecked afterwards and for the rest of their lives. So it is something we have to be very careful about, I think.

  • Hi, I know early chemo wasn't offered but the Stampede and Chaarted trials had not started so no evidence of success until past couple of years. My body no problems with chemo. 25 years ago my mother was devasted by chemo. It's not s terrifying thing any more. Show your Oncologist.

    Www.stampedetrial.org

    And on this healthunlocked site we are all optimists even those who are 94! I am 71 so lot of writing to do before I finish!

  • Hi Neal.

    Thank you for your long post.

    Interesting that there is a Dublin in California! It is amazing how you and my husband are both from a place called Dublin, in different parts of the world, and both on the same journey with regard to the cancer.

    Here are my answers to your questions:

    1. Has Paul already had Xtandi? It's something like AA. Xtandi works for 35% of the men who've had AA first.

    No, Paul hasn't had that yet. Our oncologist told us about it, but said he wouldn't recommend it because, from his point of viiew, this drug would only work for 20 % of men who have already been on Zytiga. However, we have discussed it this morning (Paul and I) and have decided to ask him again to give it to Paul. There is no harm in trying it, we think.

    2. Has Paul had Provenge? Provenge is an immunotherapy.

    No, he hasn't had that either. It was never even suggested. The first time we heard about it was a couple of days ago.Another question to bring to our oncologist.

    3. Has Paul had Radium 223 (Xofigo)? If not, maybe that's because he's not in pain yet. As you may know, it might do a lot for his mets.

    No, he hasn't been on that either, as you say, maybe because he is not in pain. Another one to suggest to our oncologist.

    4. Is Paul having scans fairly often? Do they show that he's getting any new mets any time recently?

    The last scan was done in September 2016, and it showed while there had been some healing (meaning some mets were gone) others had developed mainly in bones. So the scan conclusion was: mixed outcome, but over all good considering the result from the scan which had been done three years previously and when the PSA had been at 250.

    5. Has Paul tried taking his AA closer to when he has a meal? It's stronger that way, which means it might be more effective, but it also might be more damaging. I was already having liver function tests every 30 days, so (with my med onc's knowledge, if not support) I've been moving pill time closer to dinner, to try to get a longer ride out of AA. So far the liver numbers have stayed good.

    No, Paul doesn't want to take the medication closer to meal time because he was made aware once of the damaging effects that could potentially have on his liver and he doesn't want to risk anything. I have suggested moving the time when he takes his medication closer to meal time many times, but he doesn't want to do it.

    6. Is Paul taking Metformin? It is, I believe, the most common Type 2 diabetes drug. Because so many men take it, they've figured out that men who take it seem to do better against PCa than men who don't. It's an inexpensive drug. There have been some studies reported on this site by Patrick O'Shea, M.D.--just use the search box at the upper right & search for Metformin. My PSA did dip when I started taking it, so I'm still taking it--100 mg with breakfast & with dinner. This isn't like your big next drug or anything. It's more like something that could extend your time on AA or other treatments.

    That sounds like a very good thing to take with whatever other medication you are taking.

    You say: ...scientist, is that we don't move on to chemo until we've exhausted the other options, getting as much mileage as we can out of AA & the things I've listed.

    Yes, that is exactly what we think as well. To exhaust all other options before going on to Chemotherapy, if ever.

    It is so good to meet someone here who has such a similar story to Paul's. Thanks for posting and I will keep you up to date.

    By the way: We spoke this morning to a hospital in Germany where they offer LU-177 therapy for men with advanced prostate cancer. The hospital is in Bad Berka and the doctor there is a Mr. Baum. They sent us a form to fill in with Paul's medical history and examination results and send those to them to see if Paul would qualify for that treatment. Even if he does, though, it mightn't be an option because it is very, very expensive.

    Thanks again, Neal.

  • Mel, you & Paul are very welcome. I'm glad to be of help. A minor correction: I'm only near Dublin, CA. I did have a car repair done there. But you're right about Paul's & my similar journey.

    1. I've reliably read & been told that it's 35% of men who either go from AA to Xtandi or vice versa who receive a benefit from the second drug. As you say, there's no harm in trying it. I will have the opportunity. Medicare will pay for it.

    2. Provenge is also covered by Medicare here. I'll have a choice about the order to do things in. Research on Provenge showed it added an average of about 4 1/2 months to survival time, even though it doesn't affect PSA scores. I believe side-effects are not an issue.

    3. I will also have Xofigo at an appropriate time, thanks to Medicare. I'm mentioning this because (unless & until certain politicians interfere), the U.S. government has been convinced of the value of these treatments & includes them in its coverage for senior citizens (Medicare).

    4. I would certainly ask if it isn't time (past time?) for new scans. The real question about the urgency, if any, for a change in treatment is not PSA increase, it's disease progression. Ask about how both healing & new mets happened last time. Maybe the healing occurred while the PSA was stable, & the progression when the PSA rose. When were the last scans before Sep. 2016? Wait, are you saying they were THREE YEARS earlier? That's rather alarming, I think.

    5. I moved my AA from 2 hours after dinner, tested in 30 days, & my liver numbers were still fine. My PSA went up some, if more slowly, so now I'm trying 1/2 hour after dinner. You can ask the doctor about whether there's any real risk with frequent testing. If the liver numbers started to change, you'd just go back to the 2 hour gap.

    6. I made a typo: it's 1000 mg of Metformin, not 100. We certainly do seem to think alike as to chemo.

    I haven't heard about the German treatment. Even if it's pretty amazing, until Medicare covers it I couldn't afford it.

    I think it would be worthwhile to consult an oncologist who's a medical professor at whatever the UK equivalent of our teaching & research hospitals that Alan Meyer discussed, or who is a renowned private advanced prostate cancer specialist, as Alan also discussed.

    Neal

  • can you please give brief of your case--so as to motivate others---thanks very much

  • Thanks, Lucky. Motosue asked me the same thing a few days ago & I wrote it. Let me think about what discussion that's in, so I can copy it & put it here.

  • Hi everyone.

    So we went to Saint Luke's hospital today. The oncologist gave us all the necessary information for the form that we need to send to Bad Berka in Germany to see if Paul qualifies for the LU-177 treatment. Interesting was that, while he was very open with us and delighted that we want to explore that option, he also told us that Chemotherapy for people with advanced prostate cancer was, in his opinion, not too bad regarding the side-effects and that most men get at least 5 years out of this therapy. It made us feel a bit more positive. So we will have to see how much the therapy in Germany would cost, if Paul qualifies, and if we could afford it, but, even if not, it seems like the Chemotherapy wouldn't be too bad after all. I suppose we will have to see. Also, we asked the oncologist for more regular bone scans and CT scans as we feel that doing a scan only once every year is not enough. So we will hopefully get another scan done in April and more regular scans after that.

    I will definitely keep you posted.

    Thanks.

  • Here you go, Lucky:

    My doctor never told me about PSA tests. My next doctor, who said my DRE was abnormal, was aghast. My first PSA score was 60.7. I was 61.

    A friend sent me an article recommending against eating meat, fowl & dairy.

    RP, rising PSA in a few months. Gleason 3+4. EBRP with Lupron, same.

    I saw an integrative medicine oncologist, Donald Abrams, who recommended avoiding sugar (except in fruit) & stuff like bread that quickly converts to sugar. He recommended taking certain supplements. He had me see an acupunturist-herbalist. She recommended alternating acupuncture 1 week with massage the other week, to stimulate the immune system. She also recommended personalized prescription Chinese herbs. I follow this advice pretty closely, most of the time.

    I've been on continuous Lupron for 10 years. They weren't recommending any early chemo back then. When Lupron wasn't enough, Casodex was added until it failed. And now Zytiga for over 2 1/2 years. It took my PSA down from 160 to 13. After it started going up again, I started taking Metformin, which caused a dip for a little while. Now it's up to 47, & I'm taking the Zytiga closer to meals, with continued liver function monitoring, of course, every 30 days.

    A really bad thing happened in Sep. 2011: a spinal cord compression from a PCa tumor. Had to learn to walk again. Wheelchair to walker to crutches used as walking sticks to walking unaided, but not as well as before. For 3 different reasons, I wrecked a knee, then another (no replacements), & then an ankle. I lost my 3-point shot & much of my game.

    That's my story. If I had it to do over, I'd try Patrick O'Shea's method. But I didn't know of any alternative to what Kaiser uro's & med onc's suggested, other than adding the integrative medicine stuff, which Kaiser isn't paying for.

    Hope you're doing well.

    Neal

  • Hi Neal.

    Thank you for sharing your story. It sounds like you have had a lot to cope with over the years.

    Do you know what you would like to do next when Aberaterone does no longer work?

    We have still not decided. Definitely, though, we are investigating LU/177 more and also possible Chemotherapies.

    We have also just ordered Lycoprene from a health store in the UK. It is a food supplement, I think and amino acid found in tomatoes, that is supposed to have good effects in that it slows down tumor growth, And we have also introduced two Doterra essential oils (fennel and lavender for better and unbroken sleep) and an oil that is supposed to help with the healthy cell cycle. I don't know if any of those things work, but we are of the opinion that we have to try everything.

    All the best to you!

  • Hi Melanie,

    You're welcome. No matter what's happened to me, I've remained happy to be alive, & to be able to enjoy most, if not all, of the many things I love or like.

    I take Lycopene. If you want to get an idea of which supplements & vitamins may have value for fighting prostate cancer, read Patrick O'Shea's posts on this site. He's an M.D. with prostate cancer who reports on the actual medical research findings. I did a search for him by name recently & that didn't work. Someone mentioned you can follow people; I haven't looked into that, & don't know if it would get you past posts. But I think he uses the heading Foods, Supplements & Vitamins (or maybe the last 2 are in reverse order), so that's what I'm going to try for a search, & you could too.

    Of course some supplements & vitamins are valuable for other reasons, or for PCa & also other health issues. Have you looked into his, & your, Vitamin D blood level? Ask your primary physician for a simple blood test to give you your baseline level, & then supplement with Vitamin D3, a very inexpensive way to improve health & resistance to disease. I started out with a good level in the low 40s, but by taking 10,000 IU with dinner, I'm up in the 60s which is in the best range for fighting PCa. (There are 2 ways of measuring, btw.) It's a good way to avoid flu, etc. There's a free Vitamin D Council online newsletter you can get.

    Wow, I got way off track. I'm going to see a top prostate oncologist in the Los Angeles area on April 11 to get a better idea of what order to do things in, of the things my health plan offers. I'll also ask if there are other things he would recommend that might either be affordable or be covered by Medicare.

    Neal

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