What comes after Zytiga and Xtandi have failed?

What comes after Zytiga and Xtandi have failed?

Hi, I am Sinjonn 60 y.o. and I was diagnosed with advanced prostrate cancer with bone mets in April 2014 with a PSA of 108 Gleason 4+5 and started on Lupron and casodex in May 2014. It lasted one year only.

Nothing was done for 6 months in which time a tumor crushed my ureter and caused kidney failure.

After that I was put on Zytiga and Xtandi together in a clinical trial which only reduced my PSA to 53 at the lowest point but after 8 months my PSA has risen to 82 and new legions have been found so I was kicked out of the clinical trial.

Now they want to put me on Taxotere chemo which they say is the only option left. I feel sure there are other options before chemo which I really do not want to do.

Can any of you knowledgeable gents please offer any suggestions for an alternative treatment in the Los Angeles area or do I have to go with what the kindly intern told me "Hey you have prostate cancer, learn to live with it". (I am attending a teaching hospital).

Alternatively recommend a good hospital in Los Angeles County area.

Thank you for your time and I wish everyone all the very best for a prolonged future.

50 Replies

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  • Sinjonn, only you can determine your treatment plan. Hopefully it is with full knowledge about this terrible disease that we are faced with. I sincerely wish you the best in your decision making process. Recognize that I am not a doctor of medicine, so my opinion and a dollar might buy you a cup on coffee in LA. I suspect that one would need two dollars.....

    I am curious though. Why the fear of chemotherapy?

    With advanced prostate cancer one has mutated cancer cells flowing through your lymph and vascular systems, just looking for a place to attach and multiple. Unless the wayward free flowing mutated cells are killed outright, a cure is never possible; just a delay to some point down the road.

    This is why I embraced a very early six month chemo trial at age 57, twelve and a half years ago; seeking out researchers from academia at a major medical school. Then I was Stage 4 with metastases to T3 & L2 of my spine. Fortunately, my mets are resolved, my PSA is still undetectable, my last Lupron injection was in February 2010, and I have been on testosterone replacement therapy since January 2012.

    I have been most fortunate. I credit my Medical Oncologist, Prayer from across the World from a host of different religions, a belief in the Power of the Almighty, and a Positive Attitude shunning all who are negative.

    Keep kicking the bastard,

    Gourd Dancer

  • @ Gourd Dancer .. Thank you very much for your input. I appreciate it.

  • Wow Gourd fantastic. I hope I can last long like you. I too started chemo as soon as I was diagnosed with PC. So far I have not regretted it. PSA is also undetectable. That was 5 years ago. I just had a bone scan and saw something suspicious so I had MRI done on my spine . I'll see the doctor tomorrow to talk about the results. I hope it didn't spread .

    Wilfred

  • How did the can results go Wilfred?

    Jackie

  • Hey Jackie,

    They did an MRI and determined it wasn't cancer lesions

    I forgot what they determined what it was. Thank God. PSA is still undetectable. Feeling great..I hope Elgie is doing fine, and you too. My have this year been going by fast! Always good to hear from you guys. Take care.

  • That is Absolutely Wonderful Wilfred! I'm so happy for you! We'll be fine ;) You go have LOTS of Fun! Great feeling knowing you're well :)

    Jackie

  • Try looking up the Budwig diet. That's the diet taking flaxseed oil with cottage cheese. My cousin is doing it and his PSA WENT down for the first blood checkup . Now he's waiting for the next blood checkup. He just was diagnosed. I was doing it for a couple of bottles but must buy more.

    Take care.

  • Bought my bottle of flaxseed oil and cottage cheese last night . I want to continue it. My PSA is undetectable so cannot tell if it is helping me. As long as my PSA is still undetectable I'd better try to keep taking it.

  • I heard a natural path doctor say vitamin D "kills" cancer. Anyone heard that one before. He also said that the vit. D that I buy from COSTCO is not good to kill can er.

  • Indeed, I agree with gourd_dancer. There is a list of treatment options that we'll all go through till we exhaust them. That's probably why my Onco does not like to combine treatments together. To spread the treatments.

    I have been through most of the options! Now going through second round batch of Kemo treatments. Scrapping the bottom I guess. We do what it takes to hold off this decease for a bit longer. Kemo is rough, but in my case, my body responds to it well!! If you choose Kemo, stay hydrated, active, avoid constipation and maintain good attitude. You'll do fine.

    -Mike

  • @mshariff... thank you very much for your input. sinjonn.

  • There is also Carbazitaxol chemo - both chemos worth a try, I got away with less side effects that normal

  • @Bryan_Metcalf_UK... Thanks for the advice. I will check it out. Sinjonn.

  • Hi

    First from my own personal experiences while chemotherapy is no fun, it is likely better than the alternative for you. I done it several times before it failed for me. I am now in a low dose oral chemotherapy. Not so bad.

    There is new evidence that patients dx 'd with metastatic disease have a significant survival advantage when treated with chemotherapy.

    I am not an expert only a patient who is also 60 yrs old and has gone through all the treatments plus a couple extra.

    Have you been tested for AR-V7?

    Have you had your tumor genetically tested (whole genome sequencing). There are some targeted therapies for specific gene anomalies.

    Do you have any visceral disease (organs like liver or lung). If so adding Carboplatin to the Taxotere may be helpful.

    A trip to MD Anderson to discuss immunotherapy trials might serve you well.

    Are you being treated at a major cancer center that specializes in prostate cancer. If not you should give one a try.

    I hope this helps

    Bill Manning

  • @Dollarb58..Thank you for your advice. Unfortunately my insurance does not cover provenge or similar and its California based only. Also I tried to get the AR-V7 test but my cutting edge hospital does not do it? I would love to go to MD Anderson but cant. Good luck to you.

  • John Hopkins does the ARV7 test. You can mail them the sample. Some conditions.Out of pocket is $1000 if not covered. Not in NY or FL for some reason. See their website. Why do you want the ARV7 test?

  • Argh. I asked my oncologist about the Johns Hopkins ARV7 test (prior to enzalutimmide), and he said no, as I mentioned previously. Today I was at a genomics conference at Roswell, and in the Q&A after a presentation where they TALKED ABOUT DOING TESTS BEFORE CHOOSING TREATEMENTS, I asked the speaker, who is the Executive Director, Center for Personalized Medicine, said no, it would be (many) years before that (could be done) and there is a difference between something that can be done in a lab setting and something that is ready for clinical practice - that's the closest I can come to characterizing what he said.

    IT'S JUST TOO BIZZARE.

    One thing I DID gather to my ignorant shock is that there is somme concern that abiraterone is associated with neuro endocrine tumors as a follow-on. When were you going to bring that up? gak. Shoot me.

  • After Zytiga and Xtandi failed, I moved on to docetaxel which worked for a year. Luckily, I had no side effects. Now I am receiving cabazitaxel, again with no side effects. PSA seems to swing 300 points every 3 weeks. Currently 2277, but I continue to feel well. Being treated at two leading research facilities--University of Washington and Duke. Always looking for promising trials.

  • @Gecrellin... Thank you for your input. It seems you are farther up the road than me and I wish you a lot of good luck. Sinjonn.

  • where is all that PSA being created? You still have your prostate?? How are your images? 2277 seems like a lot of cells busy at work, not necessarily cancer cells though. What is your testosterone level? Any idea?

  • Yes, still have prostate. Already metastasized when diagnosed. Zero T. Scans show progression in bones and lymph and small spots in liver. Cabaxitaxel did not work, so now in trial combining sirolimus with docetaxel and carboplatin. After a surge to 3500 PSA is back to 2000 before I began trial. Doc calls my PSA odd.

  • Gecrellin -

    So 0 testosterone and 2277 PSA. So all the prostate cells that are creating PSA are not being driven by external testosterone - ie are the bizarre prostate cells, and no doubt cancer prostate cells, and are someplace in your body, possibly a good deal in the prostate gland itself, and some in bones, lymph, and liver. Odd, indeed.

    Any imaging to locate the currently active prostate cancer as opposed to the effects of past prostate cancer? Liver (visceral mets) is the most uncommon and the wild card. Lymph nodes can be removed. Bones can be irradiated. It would be nice to re-encapsulate the prostate somehow to take its effect out of the picture - to clarify things a bit.

  • after Zytiga my doctor put on the Provenge treatment. It work out fine. I had some spots on my lungs that disappeared. I would say try Provenge before going to chemo.

  • @Magnus1964... Thank you for your advice. I wish I had that option but my hospital nor insurance gives me that option. Sinjonn.

  • When I went on Provenge the Patient Access Network paid for the treatment and even paid for transport to and from the treatment center. Ask your urologist about it.

  • My urologists are a bunch of interns who probably have never heard of Provenge. They tell me I have prostate cancer learn to live with it.

    I am guided by Oncologists who tell me that Provenge is not an option at their hospital. i will check what you said myself.

    Thank you for your input. Sinjonn.

  • Provenge is not a treatment that is given in the hospital. I had to go to a Red Cross center where they took out my white blood cells with a centrifuge. The cells were sent to Atlanta where the Provenge is added. Then they sent the strengthened cells to my urologists office where pumped them back into me. Hospitals don't handle the extraction of white blood cells it is too cost and time consuming so they let the Red Cross handle it. I don't know what your doctors are shoveling it doesn't sound right.

  • sounds like bs

  • I have the very same question. Aggressive cancer like you. Age 44 when diagnosed 04/2015 with innumerable tumors to skeleton and lymph nodes. PSA 2740. Did docetaxel and Lupron and Flutamide right away, but castrate resistant after 6 months. Did Xtandi for 4 months this year and also Provenge but PSA still rising and tumors still growing. On Zytiga now and does not appear to be lowering PSA but prednisone helps with the pain quite a bit, as does Xgeva. You could try Xofigo, which is radiation. Starting that this week. You could move on to chemo (docetaxel, cabazitaxel, or carboplatin if you have neuroendocrine cancer) as already suggested but not going through chemo again here as it didn't seem to do much the first time (stopped after 8 rounds because PSA was rising and PET scan was worse than before chemo). Chemo has really helped slow the progression for a lot of folks, so worth a try.

    Sorry to sound so depressing but feeling fearful. Onc keeps saying don't worry, new treatments are being invented and studied all the time, but what are those and when will these new treatments be available?

  • @cancersucks... Thank you for your honest opinion. Not many options open to patients with aggressive ca. Nothing lasts long. Some guys here manage to last years on the same treatment. Oh well. Good luck to you.

  • Sinjonn,

    The first thing you need to do is fin a different doctor, one who is connected with an academic institution and who also specializes treating prostate cancer. Any doctor that says that you should just learn live with it deserves to lose their license. Find ew doctors now.

    My guess is that Provenge is not a good treatment for you at this time. The men who gain the most from the treatment are those with minimal disease as it does take time to work.

    Chemotherapy with Taxotere is the your next best step. After that you still have cabaziltaxel (Jevtana) as well as clinical trials. However, to find the best trials for your disease you need a better medical team. The other advantage of an experienced expert in advanced prostate cancer is that they will look to off label chemotherapy. I am aware of a few guys having benefited from some of the breast cancer chemotherapy treatments.

    Your most important step is to find a new treatment team, but don't wait and not start chemotherapy immediately. Don't give the cancer more time to get even stronger. There should not be anytime that you are not be on active treatment.

    Joel

  • Thank you so much for your reply. Unfortunately my hospital is a teaching hospital so I see a different intern every visit, and since I only have Medi-Cal insurance I am kinda stuck with it. Most of them have a better attitude but sometimes I feel I know more than they do.

    For now I will take your advice and go with the Taxotere and see how long it lasts. I was disappointed that Aberiterone plus Enzalutamide only lasted less than 8 months. Thank again. Sinjonn.

  • Please don't get confused with the term teaching hospital and teach/research hospital; especially one that researches prostate cancer. You may be stuck with Medi-Cal. I know nothing about it other than it's California Medicaid program. Areyou a Vet? VA in California is way ahead of the game. So glad that I have Medicare and a supplemental policy as a continuation to the health coverage I had before I retired. BTW, I have never seen an Intern for Prostate Cancer except to be introduced to a new Resident making the rounds with the Doctor Professor. I haven't seen an Urologist since 2003. My lot is cast with a Medical Oncologist that researches Advanced Prostate Cancer and Kidney Cancer. I am most fortunate.

    Interesting overview of Medi-Cal and the possible of medicine in the USA. latimes.com/local/californi...

  • I am not an expert on this, but someone else here will be able to chime in. Once you have "achieved" advanced prostate cancer, I believe you are eligible for Medicare, no matter your age. Would that allow you more options, access to different doctors and/or treatment options? In my opinion, I would not simply accept doctors who I felt were inadequate. Find other doctors and other insurance if you need to. But don't just sit back and accept it if you don't agree with their opinions.

  • I too went through those drugs in less than 5 months. I'm now on Doxetaxel or Taxotere, 5 treatment out of ten. 17 years in the fight.

  • I got cancer in 2009 gleason 8. Radiation 2007 psa droped to .23. Started risinf right away . Got cryo 2012 psa 5.6 Gleason9 . Dropped to .9 Started rising very slowly. Nov 2015 was put on casodex with the Lupron I was already getting. Psa rised to 3.3. Stopped casodex in Nov because of liver problems. Jan 2016 PSa 480. Psa mar 2016 Psa over 2000 bone mast in spine hips ribs skull and both legs. Lungs also showed cancer spread. Was given weeks to live by 3 doctors. Med oncy doc talked me into getting Texader and now I am glad she did. Still not happy aabout be pumped full of poison. Psa as of Aug 4 2016 2.4, Fear is normal but you have to over come it. Chemo has some side effects but you ca live with them all with little trouble. Only problem is some of the restrictions that go with it so get an indoor hobby. Going pon xtendi next month and stopping chemo. I wish you the best of luck and hang in there.

  • Thank you so much for your encouragement. Good luck to you also on your long journey. Hope Xtandi works ok for you. Sinjonn.

  • Love the kitty ;)

    Hope you find great answers.

  • Thank you. I love him too since he does not give me any BS like my docs; only straight answers. Are you hungry? Meow meow. Do you want to go out? Meow meow etc. Sorry, had to say that.

  • Lol. I have 5 kitties and a dog ;) lots of meowing ;)

  • from Ron in Connecticut - here's my story, as of 3/28/17 ......

    Prostate cancer confirmed in 2008 - PSA about 15 - (current age today is 70)

    Had CYBERKNIFE focused beam radiation - 5 one-hour treatments within a week

    PSA gradually dropped below 1 in 2009

    Thought I was cured - Cyberknife hospital did an article on me in 2010

    Then PSA started rising after a year

    Started CASODEX pills plus LUPRON hormone injection

    PSA dropped for a while, but then increased in following year

    Then started on XTANDI pills just when it got approved (2013)

    PSA gradually below 1 for 2+ years

    Then PSA started rising again in 2016

    Oncologist switched me from XTANDI to ZYTIGA with PREDNISONE) in Dec. 2017

    ZYTIGA not working...PSA now (test last week) up to 36

    No tumors as of 6 moths ago, but getting another BONE and CAT scan in April

    My Oncologist now researching possible clinical trials

    Can't travel out of state, so checking soon with cancer docs at Yale NH Hospital

    Meanwhile my Oncologist says PROVENGE possible later, if have tumors

    CHEMO is an option later/soon, but am a bit concerned with side effects

    Just in case, am ramping up work on my bucket list.....help!!!!!

    Good luck to all - contact me for more info - RonPilotPi@aol.com

    Ron

  • There are 2 approved chemo drugs, both taxanes: docetaxel and cabazitaxel.

    I am talking to my doctor later today and hope to try a large dose of testosterone. This has been done in the past. Today the acronym is BAT. You only have high levels of testosterone for a few days. It drops back quite fast. Cheap. Some people reacted well to it, and I dont think it killed anybody. Please wish me well.

  • Wishing you more than well Martingugino!!!!

  • Ah thank you. Did not get the testosterone thing I was shooting for (a moonshot) but did get good advice on how to negotiate with my primary oncologist, an understanding of his playbook and limits, and how to accept that as a solid base upon which to launch further adventures. Not expect him to "try things". He won't. There are other avenues for that, and of course, be careful, cause it's dangerous.

  • So sorry the testosterone thing didn't work out. I'm glad you have a better understanding of how your doc works...Definitely further adventures. Seek seek seek always....somehow I don't see that being an issue ;)

    Jackie

  • Hello, I just had my third cycle of taxotere today, I feel ok, the first cycle made me sick with fever, the next two are fine, my bone pain has gone down, I actually feel better than without chemo, my psa has gone from 43 down to 4.9 today, so as long as it stays below 10 I would say it is working, hopefully I can get 18 month at least out of this I go every three weeks for a treatment that takes about three hours, , I hope it works for you

    I am lucky to have good insurance, I only pay a small copay.

    keep fighting,

    I am 58yr old fighting since 2011

    peace and good health to you sir.

    Jack Bishop

    SoCal

  • In response to your question about a good hospital, I recommend this group of physicians in the LA area. I travelled from Boulder to consult with them.

    Prostate Oncology Specialists, Inc. || tel 310 827 7707 || fax 310 574 4002

    4676 Admiralty Way, Suite 101 || Marina del Rey, CA 90292 || prostateoncology.com

  • Many thanks, I will look into that.

  • My husband is getting ready to try Provenge Immunetherapy- talk to him about that - zytiga did not work - taxotere chemo did not work - just made him sick - lost his hair - good luck - sounds like you need another doctor

  • Father

    Age: 72, diagnosed in 2014 ( 69 )

    Diagnosed: 6/6/2014 - PSA 187

    Place: Canada - Govt Health Care System

    Location: Vancouver

    Report reads

    Prostate Needle Biopsy x 10

    Right mid medial: 5mm Length of Gleason 4+4=8/10 adenocarcinoma

    Right mid lateral: 1mm Length of Gleason 4+4=8/10 adenocarcinoma

    Right mid apex: 1mm Length of Gleason 4+4=8/10 adenocarcinoma

    Left base lateral: 15mm Length of Gleason 4+5=9/10 adenocarcinoma

    Left mid medial: 5mm Length of Gleason 4+4=8/10 adenocarcinoma

    Left mid lateral: 12mm Length of Gleason 4+4=8/10 adenocarcinoma

    Left apex: 12mm Length of Gleason 4+4=8/10 adenocarcinoma

    Right base: 5mm Length of Gleason 4+4=8/10 adenocarcinoma

    Left base medial: 2mm Length of Gleason 4+4=8/10 adenocarcinoma

    No Evidence of extra prostatic extension

    Right base: benign prostatic tissue

    1) The Stage is T3 N2 M1

    2) Bone Scan: Metastatic diseases of the spinal column and pelvis, in particular the right acetabular region, was identified

    3) CT Scan: Extensive sclerotic bony metastatic disease B) Bilateral iliac and pelvic adeopathy, suspicious of metastatic disease C) Enlarged prostate with enlarged bilateral seminal vesicles

    About my father:

    -Never took a pill in his life, never even had a headache

    -Still has all his hair, and no glasses

    -Works as a gas station attendant - 5 days a week, 7 hrs. Shifts (has worked all his life and basically keeps himself busy at home too

    -Very positive person

    -Drinks glass or 2 of milk since a kid, and since many years milk with raw eggs

    -Drink 1 glass of wine everyday

    -Eats right and weighs about 150 lbs

    We were obviously shocked to hear about the cancer, my father still can't believe it. The urologist basically put it this way

    ( back in 2014 )

    A) Bad Cancer T3

    2) Its terminal

    3) Start with Flutamide 250mg x3 time a day for 1 month then Lupron (22.5mg X every 3 mos. for 1 year) after 2 weeks of these pills

    4) No Surgery

    5) Radiation after 6 mos.

    (maybe _

    5) Gave us 3-10 years

    His PSA

    Diagnosed:

    PSA

    6/6/2014 - 187

    Started Lupron with 1st Urologist ( no chemo recommended, only HT )

    06/09/2014 - 25

    16/01/2015 - 5.1

    13/04/2015 - 5.2

    07/072015 - 14.4

    At this time, our urologist retired, another one who replaced him ( who was younger ) recommended HT + Chemo but we moved so since we were going to another urologist. we went to one who was more experienced and right close to our house

    He too said why chemo? not now so out of 4 people - only 1 said Chrmo + HT and

    GP ( Shouldn't do Chemo )

    1st Uro ( Shouldn't do Chemo till retired

    2nd Uro ( Should do Chemo )

    3rd Uro ( Shouldn't do Chemo )

    Started 6 months Eligard and Bisphosphonates but it didn't help as PSA was going up and now the Urologist sent us to Oncologist and recommended Chemo

    1/02/2016 - 79.54

    Oncologists said will chemo in side picked, radiation of any pain else not to and best to get into Clinical Trial program, because if we don't then we can only choose 1 medication ( Xtando or Zytiga ) so if one fails, we have to pay for the other one but we are on trial then if one fais, we get another - but for this we have to get PSA test every month and CT Scan, Bone scan every 2 months

    Started Xtandi

    01/03/2016 - 75.55

    29/03/2016 - 76.30

    26/04/2016

    - 81.98 ( Started Xgeva monthly )

    24/05/2016 - 62.01

    20/06/2016

    - 72.13

    18/07/2016 - 73.12

    15/08/2016

    - 68.56

    13/09/2016 - 72.58

    11/10/2016

    - 111.40

    07/11/2016 - 84.9

    07/12/2016 - 71.1

    03/01/2017 - 69.3

    31/01/2016 - 79.8

    Now as you can see Xtandi has basically hasn't brought down the PSA, it goes up and down around the same number. Around 6 months ago, I kept talking about Chemo and I was told that Chemo can only give 3 months and it will toxic for his liver. They are happy that his CT Scans and Bone Scans haven't shown any further damage and not worried about PSA as long as he has no pain. They feel, he is working so thats good and chemo might make him more tired as compared to his comparative fut life now. They said they will see if PSA goes up, might switch to Zytiga

    I am confused what to do here, I keep reading that Chemo + ADT is better however the doc says not 100% and that too studies mention at start of therapy but I hear that docs comment about side pocket is stupid and he should be given chemo when he is fit

    Then I read some comments where people haven't done chemo. Is there anyone here from Vancouver who can recommend? or others

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