who knows this ?

To all you scientists out there

My husband takes Xtandi

We plan to only take it short term

I tried to read up on what happens to the cancer cells

I found some info on pubmed explaining there was some imunomodulating effect ..and the immune system would kill some cells ( apoptosis )

The rest ?? As their AR are blocked ?? they are kind of impotent ?? gone to sleep ??

Can they wake up ??

Or do we have to wait for new ones to grow ??

I just want to find out what to expect when we go off

Then I might be able to cobble together some kind of supplement regime to counteract

I might not make a lot of sense ..An artist not a scientist

Sincerely

Els

23 Replies

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  • Why do you only plan to take enzalutamide for a short time? With metastasis to the bone, the protocol is to keep taking until it fails. Is this short-term protocol recommended by your medical oncologist?

  • No ..not recommended at all ...we are unconventional ..we have been called all kind of things

    ..I read some studies that said arbiraterone would be a good candidate for intermittent ADT

    So we are

    Just trying not to become Enzalutamide resistant .. as we then might be able to use it again later when we feel we need to go there

    I am an artist ..so creative thinking has been used before

    It goes somewhat like this

    If Enzalutamide on average only gives 5 months extra life on average ..it means to me that after you are resistant you are worse off ..you might have done collateral damage

    So lets use it ...10 weeks ( I read that on average that is when the PSA would plateau and not go lower )

    Then recover and

    struggle with the supplements again and see what happens

    If we can use it at a later date for 10 weeks again .. that is our 5 months and may leave us in better condition than if we had been taking it full time

    We were castrate resistant in under a year ..so I am worried we get resistant to Enzalutamide quickly too

    I would like to find out though what it does to the cells exactly

    I spend time on pubmed and did not get much wiser

  • The reason for my question was to elicit the answers provided below that I endorse.

    PCa is a nasty disease that can be managed for years in many cases; however, once it gets out of hand and rampant, it is very hard to slow down.

    I would always recommend you surround yourself with the best possible experts available ...... you mention Lucrin and Prostay(???) so I gather you are not in the US or Canada. By all means design your own protocols, but as others have pointed out, new protocols are constantly under review and many are looking for the best solution. If your husband responds, stay the course.

    And remember that around 35% of men are AR V7 positive so will not respond to enzalutamide or abiraterone for very long. You mention your husband had an orchiectomy - if that was for expense reasons, then enz could be a very pricey experiment. Given its expense, you may want to check whether your husband is AR V7 positive first via the blood test.

    I am curious how you are able to access the drug?

  • Els could you let us know what treatments and duration your husband has had already or is currently undergoing? Is he under the care of an Oncologist? What was his PSA? Is his PCa metastatic? Many questions but that's because at first reading you appear to be planning his medications yourself? David

  • I want to tell you most kindly but emphatically that it is not easy to formulate treatment protocols for prostate cancer. ( You have not even mentioned about a prostate cancer )!

    Well, your husband is taking Xtandi, it is clear. But I can't comment on it as a treatment that is going to help him or not without knowing what other treatment regimens he has undergone thus far, how long, with what PSA fluctuations, originating from his diagnosis, Gleason Score, cancer staging, symptoms and side effects of various treatments, experienced with his age at the diagnosis. This is the minimum but vital. Click on my name if you would like to see the important pathological features given briefly.

    However I would say, prostate cancer patients start using drugs like Xtandi ( Enzalutamide ) and Zytiga ( Abiraterone ) when their cancer reaches an advanced stage called "Castration Resistant Metastatic Cancer". That means the initial hormone therapy - Androgen Deprivation Therapy ( ADT ) has failed and the cancer has become hormone refractory. Now some other stronger drugs/treatments have to be used to control the progression of the cancer. At this stage it is not possible to cure the cancer but it is treatable. If a 'cure' is to be achieved we have to kill all the cancer cells but they all will not undergo apoptosis being so nasty and try to survive and proliferate bu using various other growth factors even when we deprive them of hormone( androgen ) normally used for their growth. There are some cancer cells which are hormone insensitive ( most dangerous type ) from the initial stages and for them any kind of hormone treatments are just irrelevant.

    Zytiga and Xtandi are similar to Lupron and Casodex. One will suppress the production of hormone and the other one is a receptor inhibitor ( bloker ).

    Zytiga and Xtandi are considered as Second line Hormone Therapy used for castration resistant metastatic prostate cancer ( mCRPC ) and comparatively they are very much stronger than the first line drugs. Their hormone suppression action and blocking action have much improved mechanisms.

    Zytiga not only suppresses the production of hormones ( testosterone ) by the testicles but also the hormones produced by the adrenal gland and the cancer tissues in addition.

    Xtandi blocks ( inhibits ) the androgen binding to the receptors at 3 stages and makes the blocking very strong. 1 ) Inhibits androgen binding to the androgen receptor. 2 ) Inhibits androgen receptors from entering nucleus. 3 ) Inhibits receptor binding to DNA ( Prostate cancer is a DNA and genetic mutation issue ). As a result of this drug action there will be a decrease in cancer cell proliferation, reduction in tumor volume and death ( apoptosis ) of some of the cancer cells.

    Any hormone therapy is only a palliative treatment. That means it can only suppress the growth and is effective only for a limited period. Effectiveness will be indicated by a rise in PSA and the aggressiveness is assessed by the PSA Doubling Time ( Shorter, the cancer is spreading very fast ).

    Sequentially it is better to use Zytiga before Xtandi.But there is no hard and fast rule at this stage. All depends on the pathological condition of your husband and his specific response to various treatment protocols and how well he can tolerate taking into consideration his overall metabolic health. These aggressive treatments are usually associated with significant side effects.

    One last piece of advice : Get hold of a good oncologist who specializes in the treatment of prostate cancer. He should be innovative and highly knowledgeable on the modern treatment strategies used to treat advanced metastatic prostate cancer.

    I hope my language and the explanation are both plain enough for the "Artist" to understand.

    I wish your husband a much quicker healing process ending in a stable remission.

    Thank you for joining us on behalf of your husband.

    May hope and strength shed light on your path!

    Sisira

  • Els, FYI I was on Xtandi for 20 months before my PSA started to rise from it's nadir (PSA - 0.07). I stayed on for another 13 months before I had to come off due to the extreme fatigue it caused (PSA - 1.01). This drug and all the others only delay the progression of the disease. There is no cure. It sounds like you "hope" that once the disease is suppressed, you can control it with supplements/dietary changes. Thousands of men and scientists, over the past 20 years, have been searching for the same solution with little success. Wish you and your husband Good Luck!

  • Not enough Information to predict. But, I know of a few men who are 3-5 years out on Xtandi with Lupron, with an extensive Supplemental program. Their PSA's are undetectable, after failing ADT, which took a few years. So they are nearing 10years, and looking good. And I know of some men who failed Xtandi after about a year, had Radium 223 for Bone Mets, and Radiation previous to 223, Took a short holiday, and went back on Xtandi, with Lupron, and are still deep water fishing, at 78-80 years old.

    A lot of data is missing from your questions. Age, Biopsy Core Results, Type of Pathology, PSA journal, all treatments undertaken matching A PSA journal, Gleason, Staging. Pathology-- everyone seems to ignore, as it can be a predictor. Getting a Complete Gene Mapping from Foundation ONE will Identify the Mutations--and with it what drugs are out there in Clinical Trial being used against those Mutations, which in many cases allows continued use of Xtandi, and Zytiga. Gene Mapping is Paid for if you have Medicare. Insurance may pay, depending on policies. You can invest a 1,000 dollars with John Hopkins and determine if Xtandi of Zytiga will work long term, by getting an AR-V7 Gene Splice test. But the warnings by Geneticists, are that the Gene Spice can go from negative to positive, of the reverse, based on certain drug protocols being used, or radiation. So my Geneticist, and yes I have one--Suggests not spending the money on the AR test--and suggests to get what you can out of Xtandi if needed. But as I said before, you did not provide enough information to even render a judgment of a prioritized supplemental program. You can try the whole kitchen sink, but one might be living and sleeping in the Supplement pantry closet. Hope some of the above gave your creative mind something to work with. And as an aside you can investigate Testosterone Cycling--sounds crazy--few do use it, and they do kill Pca cells, allowing for a return to ADT/Xtandi--for a longer term control of PSA.

    Nalakrats

  • Wow Nalakrats, Great Response!!

  • Nal,

    why can't those men take Xtandi + supplements without the Lupron and avoid long term Lupron side effects like CVD and diabetes

    Gus

  • Yes they can avoid the Lupron. A lot depends on your Pathology. If you can make it work; Xtandi with Supplemental assistance--is a better way to go. I just know of a number of men, not on this sight, and associated with the Prostate Research Institute--doing the Xtandi Lupron combo. Also 2 individual ex-business associates. 2 are not doing good! On to Radium 223, to buy some months, while seeking clinical trials.

    Nalakrats

  • I am 3 plus years out on continual xtandi

  • Dan59,

    I would like to ask if before xtandi you were on casodex or aboratorone?

  • I was on casodex 50 for maybe 2 months before snuffy put me on casodex 150 on the one and only time I saw him, which sent my liver numbers past 3x upper limit of normal so switched to estrogen patch to let liver number recover , then a year plus of nilandron which is a antiandogen like casodex we used to go from casodex to nilandron , then I did high dose ketoconazole for little more than 2 years, then 2 years of abiraterone/zytiga alone, all before I started xtandi. going in for the infamous psa test in the morning , hope its down again, If it is I will forget about cancer for 5 weeks , if not we will have to plan a strategy, my Oncologist and I. Feeling blessed to have made it so long. and after having bad liver numbers on casodex 150 , no other drug caused liver problems. we never know which drug will work great for any of us unless we try it, for me adding estrogen patch to all of the therapies when they failed worked well, until recently when I stopped estrogen patch and got a withdrawl response, so I guess that is over. Genetic Mapping by foundation medicine can pinpoint certain mutations and possibly find other drugs that will work.

    Dan

  • Dan,

    why did Myers increase the Casodex to 150......how low did your PSA go on Casodex 50

    Gus

  • Dan,

    What is your opinion of Myers...was it worth paying him the big upfront fee

    Gus

  • Dr Myers is a known expert in this disease, if you need it he will think out of the box, It was a bit to far for me to travel, I eventually settled on Dana Farber as it was much closer for appointments and my insurance covered it in full

  • Thanks Dan, The reason I ask is I was Casodex for 5 years. then Nilandron. I could not tolerate Nilandron. I was in the category that developed breathing problems with it. Then I went to Flutamide. My hands and feet blew up like balloons. Both of these drugs brought my PSA down but I could not tolerate them. I then went on Aboraterone plus prednisone, that was good for 3.5 years. Next I had salvage radiation to my hip area which worked fine. I am now on xtandi. It seems each drug has an effective time shorter then the last, that is why I asked.

    I am hoping xtandi will last longer because I am in trial with a mystery drug from Eli Lilly. The Mystery drug is suppose to extend xtandi's effectiveness.

  • Magnus, I wish you the best with the xtandi, combo drugs seem to work better.

    Dan

  • think I read somewhere ..Metformin makes Xtandi more effective there are trials on the way

  • Els,

    Testosterone is a "signaling molecule". When it gets into a prostate cancer cell, it triggers cell division.

    Hormone therapy will kill some prostate cancer cells and render others dormant, i.e., not dividing and multiplying. If testosterone is no longer blocked, I think that dormant cells will start getting the signals and begin dividing and multiplying again, i.e., to wake up and begin spreading. I don't know how much is known about all of this, however it is my (inexpert, non-specialist) understanding that intermittent therapy can improve quality of life (by giving a vacation from the Xtandi side effects), but it won't increase longevity and may in fact decrease it.

    As others have said, the cancer will eventually become resistant to the drug. I have read some arguments that say that some tumor cells will cease to require testosterone to start cell division and some that say that the tumor cells may actually synthesize their own testosterone. But whichever it is, the Xtandi does not work forever.

    I'm not saying that your ideas about intermittent therapy are wrong. I don't know if they are or not. But I do think it's a good idea to explain your ideas to a prostate cancer specialist and get his opinions. If he tells you that your approach has been tried and it failed, or if he tells you some reasons why he thinks it won't work, I would take his advice seriously.

    Best of luck.

    Alan

  • Hello

    I forgot to tell you we live in Australia

    We are not privately insured and can only access the gold standard ..the things reimbursed by the government ..

    Our oncologist follows the standard protocol ..we refused chemo ..took the orchidectomy when he became castrate resistant ..because we thought it was a healthier option

    Then we sailed on for about 2 years without any treatment ..except that we had radiotherapy for a spinal intrusion ..it worked and the pain he had went

    I read a lot ..the beloved swallowed lots of supplements

    The oncologist is not interested in what we try to do

    But was happy we wanted to take Xtandi ( you can get either arbiraterone or Xtandi )..we chose the latter because we could take more supplements with Xtandi as it is better on the liver

    We do not have creative alternative cancer doctors in Brisbane ...well not that we can afford

    Diagnosis over 3 years ago PSA 100 METS a bit every where in the bones

    Gleason 9

    Castrate resistant in under a year

    PSA doubling time one month ..if we do not take any supplements

    With all this it did not look good ..and the beloved wanted to be kept out of doctors waiting rooms as much as possible ..he did not want it all to be one long medical process ..

    So we sail on ..and all considered I feel we have not done too badly so far

    Sincerely

  • Hi M,

    you state the PSA doubling time is 30 days without supplements...how long is the doubling time with the supplements and what supplements increase the doubling time

    Gus

  • Hello

    I love to share these

    Among all the usual things he takes ..like sulphoraphane ..resveratrol ..Delta E DIM ..nattokinase .. aged garlic etc ..etc

    I know of some things that made a big difference

    Prostay ( VIT C and K3 ) gave about 6 months stable ( 9 a day )

    I would add liposomal VIT C

    Here the link to make your own qualityliposomalc.com/proce...

    Only the first time is a bit tricky

    Big Pharma patented VIT C and K3 ..it is called Apatone A you can find the studies on pubmed

    PSK Tramune did about 30 % They use it in japan a lot ( Krestin ) ..heaps of studies

    We will add PSP to the PSK ( Oriveda ) when we go off the Xtandi

    Synergy with delta gold VIT E..I will also add some other beta glucan

    Hope this helps

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