I have been looking back at my husbands T numbers over his three year history of treatment and looking for thoughts after a doctor today made a comment Charlie is becoming CR and should try Provenge.
Little history. T has always been low in Charlie. Usually below 300 for 15 years prior to being diagnosed with PC in 5/17. I feel that may have been a reason why he developed PC.
This is his T history
3/17. T 254
6/17. RP. Told margins were clear
10/3/17 T 89. (No ADT Treatment. Why is T so low? RP causes T to go down then recover?)
10/10/17. 30 days of Bicalutamide started. Positive Lymph Node. Margins not clear. Lymph Node was removed.
2/23/18 T 252 PSA has risen again. Radiation to the pelvic bed
Lupron is started for 15 months.
Testosterone goes to less than 7 while on Lupron. Lupron wears off 6/19
8/7/19. T 8. T Starting Up. A lesion is found on T6 and in hip. SBRT
11/13/19. T 19. T is increasing still. Still no ADT
3/5/20. T is 69. MRI reveals cancer smoldering on T5 and T7. These spots will be SBRT treated 4/30/20.
I hope this is not to hard to read. Lupron worked very well to control PSA and never "stopped" working. Our doctor took Charlie off Lupron really wanted to see if he could cure my husband with Oligiometastic approach and by using SBRT.
Today a local urologist, not one we consult regularly, commented Charlie was CR and it threw me for a loop. I think he may have been confused Lupron stopped 10 months ago. But looking back at 252 being his normal, could the pelvic radiation have caused damage to his testosterone production? Or is his Testosterone still recovering from Lupron he stopped 10 months ago? Is it far to say a man is CR when Lupron has not failed to control his PSA or metastasis and just base this statement on his very low but rising T? It seemed strange to be to have Provenge recommended at this stage when the only medication Charlie has ever had are Lupron and 30 days of Bicalutamide.
Having said that, Charlie takes 2500 mg of Metformin. I apologize for not being able to upload studies, but I have read Metformin reduces testosterone. Also Charlie takes Ketrocondazole rotated with Itracondazole and Mebendazole since these drugs are so hard to get now. Ketrocondazole, according to the American Cancer Society, is right under Zytiga as a drug used to lower testosterone produced in the adrenal glands. So that being said, he does take drugs to lower testosterone but they aren't sexy enough to be prescribed.
Thank you for your thoughts.
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paige20180
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Paige....Do you mind if we start with some basic concepts:
(1) Castrate resistant and Androgen Independent are two names of the same condition.
(2) Castration resistance is defined as ..." When PSA starts rising while a man's testosterone is still in castrate level ( which is less than 20)
(3) In order to call someone castrate resistant or Androgen Independent, the labs MUST show that PSA is rising in spite of very low testosterone.(less than 20 ususallThe main reason why we mesure testosterone is to only know one thing...and that is if the man is still at castrate level or not. T has no direct relationship with extent of cancer cells in the body.
(4) It is PSA which gives us the idea about extent of cancer cell and/or mets ....(.AND NOT T.)
Coming to specifically your husbands case:
If lupron is still lowering his PSA , he is not castrate resistant ...because all lupron does is that it lowers testosterone and very low testosterone in turn lowers PSA. And very low PSA means lot of cancer cells have either died or in coma.
Based on what you told above..I DONOT think your husband is Castrate Resistant...His doctors seem confused or do not know what castrate resistance means.
Note: Tetsosterone recovery can take anywhere from 6 months to 36 months depending on the individual. A 2019 japanese study showed that median testosterone recovery takes 15 months in Japanese men after stopping Lupron.
Men who had lower T level to begin with..take longer to get T back after stopping ADT, And T doesnot recover 100% in most men.
I stopped Lupron and all Pca meds 3 months ago..and my T came less than 5 yesterday. But luckily..PSA is still 0.2 I am waiting curiously to see how many months it takes for T to recover ?
I agree. His T has to be at castrate level before a determination of Castrate Resistant can be made. Given his history and his time on ADT, I'd say it would be unlikely anyway. He could be years away from Castrate Resistance.
Yes ..Gregg...There is either ignorance in some Docs or un needed fear mongering.
In some men, castration sensitive stage can last 5 to 10 years whereas the Onco parrots keep chanting only 2 to 3 years and scaring everyone. Everyone's castration sensitive stage may vary ....and can be anywhere from 2 years to 10 years.
The guys that have recurrent PCa after surgery or radiation seem to have longer times to CR as compared to guys diagnosed at stage 4 with extensive mets like me. The difference between the two groups can be years.
Our goal should be to somehow prolong our Andogen sensitive status....This is precisely the reason that I embarked on Intermittent ADT. Dr Laurence Klotz depict beautifully in his research paper...how Androgen sensitive cells grow and prevent Androgen resistant cells to grow...therby prolonging Androgen sensitive stage by years thru Intermittent ADT. I am taking a risk by IADT but very closely monitoring PSA, T ,ALP, Albumin, LDH, Hb%,NLR and PLR.
Gosh I do not mind at all. This is exactly what I need. Thank you so much for these concepts and for taking the time. I need to understand this stuff so I know when someone is making a mistake in my husbands care, I can advocate for him.
Its very important to learn right information as prostate cancer area is full of misinformation, confusing information ...mostly due to competing profit motives and
hegemony of standard of care pallbearers...who want to put all patients in a tight box called Standard of care.....BUT ..Every man's prostate cancer is unique in many ways..and everyone needs an indivisualized treatment.
PCa ranges from mild ..called indolent type..to Seriously aggressive type and all shades of aggressiveness in between.
He is lucky to have a wife who cares and is willing to empower herself with authentic information to help him. Thats what I call a real life partner.
In my opinion, his case is far beyond any urologist. I would be working with an oncologist who has had at least 300 prostate cancer patients. Best book I can recommend is by Mark Scholz.
Charlie is treated at Mayo and Hopkins. This Urologist sent us to Mayo. Charlie touches base for blood work and PSA. But he made the CR comment and disagrees no ADT was recommended with the SBRT. I read studies that ADT world better with pelvic bed radiation and not 3 sessions of SBRT. I do respect this doctor because he referred us to Mayo. I just had so many questions and he was in a rush. I knew here, I'd get the answers.
Well you make a case for overthinking this maybe and therefore over treating which I think can happen especially when a doctor suggests Provenge at this point. I was pretty shocked.
Hi Nalakrats. I was telling Charlie the same thing the other day from some of the articles I have read, that if he ever gets in trouble, the high dose of T makes sense. Looking forward to reading these books and thank you so much for your recommendation on the MO. He was great. Said my husband had 5-8 years and not one extra day, but we LOVE a challenge lol.
In brief, based on the numbers you provided, the PSA never hit an undetectable level, which would have been the preferred result.
PSA is a marker, or indicator of PCa, assuming it is castrate sensitive because the PSA rises as the 'fuel' for the PCa, as expressed by 'growth'.
Eventually, in many cases, the PCa morphs (changes) to castrate resistant, meaning that the PSa is no longer a significant factor in the progression of the disease.
There is plenty of good advice on this site. However my observation is that too many people are taking directions from too many different Doctors. I wa first diagnose w/PC in 1999. Yes, still here. Figure out who is driving the bus for you husbands treatment plan and still with him/or her. Urologists are not Medical Oncologist. I think of my Urologist as my plumber. My medical ongologist is part of a grouo that treats PC only. He is my lead man. I see him every six weeks and bring a list of question or comments that other have made. I,ve been on Lupron for years as will as Zytiga !000 mg/day. My testosteron is practically non existant, which id what I want. Rising T is not good thing. Testosteron is the car that Prostate Cancer Cells ride in. MY MO is mainly concerned with my PSA numbers. If it starts rising over a 2 or three month period, then something is about to happen. My MO will either add something or put somethng on pause. for a month or two. I had Prevenge about six years ago. No direct effect on PSA or T. It is a three week process in which they remove some white blood cells, send them to a special lab where they are multiplied, turned into little cancer fighting ninjas and reintroduce to your blood stream. As far as I know there is no way to judge the efficacy of Prevenge other that whether you are still alive or dead.
Please excuse my typos as I am very nearly blind
Most important, most of the men in this group have or had metastatic prostate cancer, all with varying scope of disease and most with different treatment experiences and different treatment philosophies. What works for one does not necessarily work for another. What we are left with is a standard palliative treatment designed for longevity. All designed at keeping the bastard at bay,
Since 2004 “driving my bus has been a research medical oncologist in academia - a professor at the major medical school. He passed away last September, and I am so glad that I met him. He was my hero; his staff said that I was his hero......
You can research my six month chemotherapy - hormone therapy with some orals thrown in if you are interested. The overall goal, based on a hypothesis, was to reduce PSA, keep T at less than 5, and systemically kill the little bastards moving around via the vascular and lymphatic systems of our bodies. Some say that the results which I enjoyed are antidotal; however, they don’t really know. I know that under the right circumstances, treatment worked for me.
I was able to discontinue Lupron/Eligard in February 2010. My testosterone never came back. So I am sitting here with undetectable PSA and T at 5.0 or less. In an effort to restart the production of testosterone, I have been using 4 mg of Androgel gel twice a week. When I stop, T bottoms out; if I continue, T scores between 350 and 750 depending on when I apply the gel.
I will share the best advice which I received from two different radiation oncologist when two mets were discovered,. I queried both as to what they would do if they ever found themselves in my shoes. Both said that would find the best medical oncologist available who specialized only in genitourlogic cancers; not a generalist. Some one is at the top of their game only in my cancer. Then do everything that he says to do.
The end result is that I found someone considered one of the world’s leading authorities on the treatment of metastatic prostate cancer. I did not receive the standard of care available; in a research environment, and as the president of a major medical school told me in December, “You received care which is beyond the standard. You might think of it as an ultra standard. Unfortunately, it is not available to all.”
I stopped seeing a urologist in 2004. I had reason to see a new young one last year. In our discussion, he said, “I have read Dr. Amato’s papers. You are one of his successes. Do you know how lucky you are?”
The reason lies in scope of disease and getting a very early start killing the bastards. It happened for nine men; it did not happen for 48 others. And in today’s medical profession it is a greater percentage of success rather than success for a few which takes precedence.
The hope that I can give is to trust and listen to your medical oncologist. Let them drive the bus. And, remember that you are always a Statistic of One. Your statistic is the only one that really matters. Put faith in the hands of a pro and your Creator and then continue with life where ever Life’s Path takes you on this journey.
God Bless; God Speed and kill the little bastards.....
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