who knows this ?: To all you scientists... - Advanced Prostate...

Advanced Prostate Cancer

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who knows this ?

mijnzoek profile image
19 Replies

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

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mijnzoek profile image
mijnzoek
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19 Replies
Scruffybut1 profile image
Scruffybut1

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

mijnzoek profile image
mijnzoek

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

Sisira profile image
Sisira

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

bb66hotflash profile image
bb66hotflash

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!

Dan59 profile image
Dan59

I am 3 plus years out on continual xtandi

Magnus1964 profile image
Magnus1964 in reply to Dan59

Dan59,

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

Dan59 profile image
Dan59 in reply to Magnus1964

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

gusgold profile image
gusgold in reply to Dan59

Dan,

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

Gus

gusgold profile image
gusgold in reply to Dan59

Dan,

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

Gus

Dan59 profile image
Dan59 in reply to gusgold

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

Magnus1964 profile image
Magnus1964 in reply to Dan59

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.

Dan59 profile image
Dan59 in reply to Magnus1964

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

Dan

mijnzoek profile image
mijnzoek in reply to Magnus1964

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

Dan59 profile image
Dan59

Wow Nalakrats, Great Response!!

AlanMeyer profile image
AlanMeyer

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

mijnzoek profile image
mijnzoek

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

gusgold profile image
gusgold in reply to mijnzoek

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

gusgold profile image
gusgold

Nal,

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

Gus

mijnzoek profile image
mijnzoek

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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