Castrate resistant? : Does anybody know... - Advanced Prostate...

Advanced Prostate Cancer

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Castrate resistant?

Fight11 profile image
29 Replies

Does anybody know if you fail Lupron or ADT drug which I think their called. Does this mean you’re castrate resistant? If so does this make your cancer much more harder to treat and lessen your life expectancy?

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Fight11 profile image
Fight11
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29 Replies
Magnus1964 profile image
Magnus1964

To be Castrate resistant You have to fail all ADT drugs.

Fight11 profile image
Fight11 in reply toMagnus1964

My husband’s doctor said he’s castrate resistant because he failed the Lupron and his testosterone level is 14

Tall_Allen profile image
Tall_Allen

Yes, you are castration-resistant if your PSA goes up while on Lupron, or any other hormonal medicine. It just meaans the androgen receptor has adapted to it. Fortunately, there are now many medicines that may be used in this situation: Zytiga, Xtandi, Docetaxel, Xofigo and Provenge. Other medicines too if there are some unique tumor characteristics: PARP inhibitors, Keytruda and a few others. There are also many clinical trials.

Fight11 profile image
Fight11 in reply toTall_Allen

Does it mean that your life expectancy is cut shorter due to the fact that you are castrate resistant? Are you castrate resistant? If so how long have you been battling this? My husband could not have his prostate removed due to the fact it was fused to his rectum. He is a Gleason score 9 PSA was 27 at the time he had 42 rounds of radiation six months after the radiation his PSA was 0.16 months after that which was his third shot of Lupron PSA was 10.49 the urologist said this will not be a good outcome I hope you guys could have more encouraging news

Tall_Allen profile image
Tall_Allen in reply toFight11

It is part of the natural progression of the cancer.

Fight11 profile image
Fight11 in reply toTall_Allen

Is there hope? Would you mind sharing your story with me

Tall_Allen profile image
Tall_Allen in reply toFight11

Read this:

menshealth.com/health/a2530...

itzyb11 profile image
itzyb11 in reply toFight11

Dear Manohar11

Zytiga and/or Enzalutamide are very efficient drugs for castration resistant guys

AlanMeyer profile image
AlanMeyer in reply toFight11

Hello Manohar,

Lupron or a similar androgen deprivation drug is one of the first drugs attempted because it works very well for some men and is relatively easy to take. Since that has failed, it's time to consider other drugs. Many new treatments have become available in the last few years and more are likely to be available soon. In order to get the best treatments for your husband's specific case, I think you'll need expert help from a doctor who treats lots of prostate cancer cases and keeps up with the latest prostate cancer treatment research.

Most urologists don't specialize in drug treatments. Their main specialty is surgery - which is probably not going to be useful at this point in time. So if your husband's treatment is still being handled by a urologist then, unless he's really exceptionally attuned to the latest drug research, you may get more advanced treatment from a medical oncologist who specializes in prostate and similar cancers.

If you post information about the area where you live, or the area within which you're willing to travel, someone here might be able to recommend a medical oncologist that they liked in that area. Another good source for doctors is one of the cancer research institutions, usually a university medical school. The National Cancer Institute maintains a list of the research institutions that they think have the best centers for advanced treatment here: cancer.gov/research/infrast...

If you live in the U.S. near one of these cancer centers, I think it's worth looking at their website and giving them a call.

Best of luck to you both.

Alan

Fight11 profile image
Fight11 in reply toAlanMeyer

I live in Massachusetts

AlanMeyer profile image
AlanMeyer in reply toFight11

I don't know any doctors in Massachusetts myself, but there are two world famous institutions:

Dana Farber / Harvard University Cancer Center in Boston:

cancer.gov/research/infrast...

And the David H. Koch Institute at MIT in Cambridge:

cancer.gov/research/infrast...

Depending on where you are in Massachusetts you might be interested in the Yale Cancer Center in New Haven Connecticut, or one of the half dozen centers in New York City.

I suggest you call one them. My first choice might be Dana Farber, but they'll all be very good. I think you'll be connected first to a receptionist, then perhaps to an oncology nurse. Don't be afraid to ask questions. Tell them your husband's condition. Ask them if they accept the insurance you have. Ask which of their doctors they would recommend for prostate cancer treatment. Ask how soon you could get an appointment and be prepared to make an appointment while you're on the phone. Ask what medical records they would like to see and whether you should try to bring them with you or to have them sent ahead, and if so, how to send them. Ask them what you should know that you didn't know enough to ask.

Prostate cancer is a terrible disease but there has been tremendous progress in treatment in the last ten years. There are no cures yet but I am hopeful that more and more patients will be able to reach a state where they can live with the disease for years with few or no symptoms and the ability to live a full life. And whatever happens, please do try to come to terms with your situation and enjoy whatever life remains.

I wish you the best of luck.

Alan

Fight11 profile image
Fight11 in reply toAlanMeyer

Thank you so much Allen

NecessarilySo profile image
NecessarilySo

I also had radiation treatment 40 rounds, in 2008, twelve years ago. After that treatment my PSA went to <0.1. and gradually rose. After about four years my rad onc decided it was metastatic, as the PSA rose slowly to 10. I was given Lupron, 2012, 2014, 2016. Each Lupron series of three shots, 90 days apart, with oral bicalutamide, lowered my PSA to <0.1. Each time, the PSA rose after about two years to about 10. After the lthird series, in June, 2016, my ro and I chose to go Intermittent rather than continuous hormone therapy, which meant that I would let my PSA rise more than 10. After four years, this June, 2020, at PSA 35, I recently went on Lupron with Xtandi. That lowered my PSA to 7.7 after two weeks. So my survival has been total over twelve years since original discovery, and eight years since metastasis. Charts show five year survival 75% after metastasis, roughly, with either continuous or intermittent Lupron. So I am doing pretty good .

Your hubby seems different from me. Lupron worked pretty well with me. My guess is that he has castrate resistant pc. My understanding is that there are two types of prostate cancer cells, one is hormone sensitive, one is hormone resistant. Your hubby has mostly hormone resistant or castrate resistant. In other words, with lower testosterone level, caused by Lupron, the hormone sensitive cell growth is cut down, and the hormone resistant cells are not. So that is why his PSA didn't go down near zero, like mine, after Lupron treatment.

In your hubby's situation, the survival rate is significantly lower because the growth rate is not cut by hormone therapy, or reduction of testosterone, because he has cancer cells that are not responsive to the absense of testosterone.

I think, and someone correct me if wrong, there is not very much that can be done to extend survival, except Xtandi does have the ability to extend normal 14 months by a couple of months. 75%$ That is explained by the literature that comes with Xtandi and there are studies that show effectiveness of Xtandi, and similar injections.

In my own opinion, that extension assumes that no alternatives can be used to extend. And as far as I know there are no known medical methods to extend.

However, as I have written in a previous post, which I have to admit is somewhat ridiculed, there are three things that can be done to extend survival rate. I explain in more detail on my other post but in a nutshell, pardon the expression, they are: lycopenes, heat therapy, and magnetic therapy.

Fight11 profile image
Fight11

There is no hope for castrate resistant patients?

NecessarilySo profile image
NecessarilySo in reply toFight11

I explain in my other post, that lycopenes tend to increase T-cells and reduce prostate cancer cell growth rates, (however, I don't know if that applies to castrate resistant cells), but heat therapy applies to ALL cancer cells, (so that should be hopeful), and magnetic therapy also applies to all cancer cells, (also hopeful).

Fight11 profile image
Fight11 in reply toNecessarilySo

To be honest I don’t understand exactly what that means. I’m sorry

NecessarilySo profile image
NecessarilySo in reply toNecessarilySo

What I mean is that there are alternatives that you can pursue other than those that are prescribed by a doctor. Pills and injections all have undesirable side effects, and are of limited ability to control the disease.

Lycopenes are antioxidants found in many fruits and vegetables, most easily obtained from tomato products. V8 juice, tomato sauce, and tomato soup and pasta sauce have high lycopene content. Simply consume some regularly and the benefits include a slowdown of prostate cancer cell growth.

You can also try heat. Did you know that cancer cells die at 106 degrees F? Showers and heating pads are designed to exceed that temperature. Also Saunas and hot tubs. Simply apply heat to the known locations of tumors, above 106 degrees F, and tumor size can be reduced over time.

Refrigerator type magnets can be applied with tape, to the locations of known tumors, as well, to simply kill cancer cells. This is a bit tricky because you need to make sure you apply the proper (negative or south) field to the tumor.

So, you ask about hopeless, it is not hopeless if there are things you can do about it.

MateoBeach profile image
MateoBeach in reply toFight11

Hope : Yes there is abundant and wonderful hope that is present in each and every day of life! Celebrate and honor your amazing and unique life by living every day to its fullest. Connect deeply to loved ones. Say “Yes” to every (good and reasonable) opportunity. No one with or without cancer can do better than that.

j-o-h-n profile image
j-o-h-n in reply toMateoBeach

You took the words right out of my fingers.....Way to go!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/27/2020 5:23 PM DST

TwilightZone profile image
TwilightZone

I believe I'm about to board the same boat you're in. Keep the faith.

Fight11 profile image
Fight11 in reply toTwilightZone

What is your story? This is his wife I’m the one who does all the posting I’m just a nervous wreck

TwilightZone profile image
TwilightZone in reply toFight11

December 2015 had prostate removed, Gleason rating was 8-9, but thought the surgery took care of the entire problem. Learned in October/November 2018 cancer had metastasized in to lymph nodes. Was given Lupron 45mg. injection immediately followed by 40 radiation sessions over 8 weeks, then was promptly scheduled for PSA tests and Lupron 45mg. injection every six months. Last May was my fourth injection, and doctor said PSA was <0.2, according to him "the same as undetectable." The three times before, the PSA was <0.1, and got the same response "the same as undetectable." I could tell in his voice the next PSA test is probably going to be in the detectable range and require a change in injection and maybe more radiation, or whatever he prescribes. You cannot get comfortable thinking you've beat cancer, it's a SOB. You have to stay strong to extend your life, and I believe I will do just that, but I will not have the peace of mind I hoped for when I retired in May. YOU AND HUSBAND MUST BE VIGILANT REGARDLESS OF THE TREATMENT HE'S PRESCRIBED! AND YOU KNOW WHAT, EVERYTHING WILL TURN OUT JUST FINE! HE WILL BE OK!

Currumpaw profile image
Currumpaw

Hey Manohar11!

Go the 14 minute mark on this video. Note that the patient's PSA stabilized, his PSA did not decrease but did stabilize until he "got off the sauce"!

youtu.be/-JpHkqg8j-8

There was a study posted by pjoshea13 last November. I believe the study found that capsaicin killed prostate cancer stem cells. Dr. Klotz was involved in the study.

My best to you,

Currumpaw

Balsam01 profile image
Balsam01

With a Gleason 9, I would think your husband should get genomic testing. I'm sorry if someone else has already suggested this or if he has had it. Some mutations can be treated with parp inhibitors.

MJCA profile image
MJCA

I have been non-metastatic, castration resistant going on two years.

If there are no metastases, three new drugs are out there: enzalutamide (Xtandi), apalutamide (Erleada) and darolutamide (Nubeqa). I am on Erleada.

On average, it deters metastasis for an additional 40 months.

Fight11 profile image
Fight11 in reply toMJCA

My husband is castrate resistant after a yr with Lupron. They put him on Zytiga. He has Mets in his rt shoulder sternum and hip. I pray this can extend his life. I’m such a mess. He starts the Zytiga tomorrow

j-o-h-n profile image
j-o-h-n

to Manohar11,

Quoting you: "I’m just a nervous wreck". And where does that get you and your dear husband? Stop that!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/27/2020 5:27 PM DST

Fight11 profile image
Fight11 in reply toj-o-h-n

I don’t show him. Inside it breaks my heart. I just hope there’s hope seen as though he is castrate resistant🙏🙏❤️💞

j-o-h-n profile image
j-o-h-n in reply toFight11

My dear Ms. Manohar11, There is always hope!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/27/2020 5:45 PM DST

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