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Raising testosterone numbers

Jif1 profile image
Jif1
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Testosterone and its relationship to cancer cell gross: I just read a recent study that showed that testosterone accelerates cancer cell growth. I guess that makes sense because I had hormone therapy along with Zytiga For a two-year period and I am now stabilized with no evidence of cancer.

for a two year. And I am now stabilized with no evidence of cancer.

However, My testosterone has been going up close to 300 the last time and I’m not sure what that really means?

Does anyone have any answers or suggestions to the situation?

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Jif1 profile image
Jif1
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Tall_Allen profile image
Tall_Allen

There is no profile. Did you have metastatic PC or not?

Jif1 profile image
Jif1 in reply to Tall_Allen

Hi: thanks for responding. I had robotic prostatectomy in February, 2006, with reoccurrence twice. Had radiation again with Zytiga, hormone therapy in 2018. Had metastasis in lower abdomen which was eliminated.

Tall_Allen profile image
Tall_Allen in reply to Jif1

What do you mean by " metastasis in lower abdomen ?" Please be specific. Do you mean, for example, para-aortic lymph nodes and the whole string were treated? Were the common iliac LNs irradiated? Do you mean a single LNs were irradiated?

Jif1 profile image
Jif1 in reply to Tall_Allen

What I remember, is that I had matastasis in my lymph nodes which were eradicated.

Tall_Allen profile image
Tall_Allen in reply to Jif1

The reason this is important is because treatment of individual lymph nodes is not curative:

prostatecancer.news/2020/12...

It is also important to understand precisely which LNs were irradiated. Treatment of those outside of the pelvic LN drainage area (designated M1a) will not be curative.

It is important to understand that PSA will be reduced by such treatment, although the cancer is not cured. This is called "treating PSA." You can read about it here:

prostatecancer.news/2020/07...

Withdrawing ADT and Zytiga and allowing your testosterone to rise will invigorate the micromets that remain. But you may want to do that anyway to give yourself a vacation. If so, it is imperative to have periodic scans to check for new metastases. PSA is not a good guide anymore.

Jif1 profile image
Jif1 in reply to Tall_Allen

Wow. Thanks. I have had medical treatment since February , 2006. I am very happy to still be here, but it seems like treatment it’s never ending, although I am stabilized now (as they tell me) with no evidence of cancer.

novatimo profile image
novatimo in reply to Tall_Allen

TA: You said "PSA is not a good guide anymore." Do you have links to supporting articles I can share with my MO?

Tall_Allen profile image
Tall_Allen in reply to novatimo

Yes, I provided a link above - click on it.

Jif1 profile image
Jif1 in reply to Tall_Allen

Thank for your comment. Do Medical Oncologists agree with not using PSA as a guide? It has always been my benchmark on decision making for treatment.

Tall_Allen profile image
Tall_Allen in reply to Jif1

Maybe you should read the link I provided.

Sam1962 profile image
Sam1962 in reply to Tall_Allen

Hi Tim, how was your abdominal lymph node cancer eradicated? I thought it was too dangerous to radiate nodes in the abdominal area?

Jif1 profile image
Jif1 in reply to Sam1962

I had radiation for the matastized lymph nodes, and it worked.

Jif1 profile image
Jif1 in reply to Tall_Allen

Allen; when I had radiation for metastasis of lymph nodes , the whole chain was treated with a stimulus boost to 60 to 65 GY in the same fractions that were included.

Testosterone is linked with the occurrence of certain prostate cancers. Supplementation with testosterone can be part of that although men who do not supplement can also get those types of cancer. Is your testosterone level being monitored and, if so, what does your healthcare provider have to say?

Jif1 profile image
Jif1 in reply to

Thanks for responding. I do not take anything to increase testosterone, it has been increasing on it’s own. For a long time, I had no numbers. Then it was 2 and then 4 and the last time in January, it was 297. When I asked my MO about it, he said, that is what we want to happen. I am totally confused by his answer, as the most recent results of a study, shows that testosterone is aggressive towards feeding cancer cells.

in reply to Jif1

Perhaps ask your MO to explain that in relation to the research you have read. I would be interested to know. Here is information about normal T levels.

Jif1 profile image
Jif1 in reply to

I will be talking with my MO on the 17th and have sent the article to him. I can let you know what he says.

in reply to Jif1

I appreciate that.

Jif1 profile image
Jif1 in reply to Jif1

My most recent Testosterone was 514, up from 287 last January. I wish it had a positive effect on my sexual functioning. No sensation “down there”, nothing. What can I expect?

pjoshea13 profile image
pjoshea13

Recovery of testosterone levels is natural when you stop ADT/Zytiga. Recovery is slow - you were last at 297 ng/dL & that is still hypogonadal (<350 ng/dL).

Testosterone, while necessary for PCa growth, does not cause PCa. In fact, men with low testosterone are more likely to have aggressive cancer than men with high-normal T.

-Patrick

Jif1 profile image
Jif1 in reply to pjoshea13

So, With my testosterone currently being low then there is more chance of feeding cancer cells if I’m correct in reading your previous response

Jif1 profile image
Jif1 in reply to pjoshea13

Morning: I have read and reread your last sentence. I have been told that my cancer is stabilized and that there is no evidence now of cancer. However, your last sentence, “in fact.....not sure how that applies to me, or does it apply to men who have cancer?

Jif1 profile image
Jif1 in reply to Jif1

Hi: last Testosterone score one week ago, up from 297 (January) to 514. Still no “activity” or sensation down there. What can I expect?

in reply to Jif1

Are you taking any cialis or something like that? At 514 test, you would certainly be expected to have some libido i would think. I would gladly have 514. Mine has always been low unless I was taking something like Androgel

Jif1 profile image
Jif1 in reply to

Not taking anything but need to ask my MO on Wednesday. Thanks

AlanMeyer profile image
AlanMeyer

There has been a lot of interest in the last few years in "Bipolar Androgen Therapy", aka "BAT". The treatment consists of alternating periods of very low and relatively high testosterone ("T") levels. As I understand it, the theory behind it is that, after a lengthy period on ADT, most of the tumor cells that need T to thrive are dead and the remaining tumor cells are all, or mostly all, able to survive and spread in a low T environment. If you then switch things around and create a high T environment, then (maybe) most of the cells that live well in a low T environment will not do well and will suffer from competition with the cells that do like lots of T. So the hope is that two different populations of tumor cells will alternate in the body but neither one will get a chance to get really dangerous before it gets hit with a T environment that it can't deal with. It won't last forever but, for some men at least, it might last longer than long term low T and also give some relief from the side effects of low T.

Is the theory right? I'm not knowledgeable enough to say.

Tall_Allen has a number of blog posts on this topic. See: prostatecancer.news/search/.... He cites evidence that, for the theory to work, you may need T supplementation, not just recovery of ordinary levels of T. However he does note that some men do seem to benefit from BAT while other men don't.

I think this is a topic to discuss with your oncologist. What is he trying to achieve in taking you off ADT? Is it BAT? If so, he might need to supplement your T and not just let it get back to normal. Is he just trying to give you a temporary vacation from ADT to improve your quality of life? Is it because you asked him to do it - essentially asking for the vacation from ADT.

In any case, he needs to tell you his long term plan. What will cause him to put you back on ADT? Presumably there is some PSA level or some rate of increase that will signal to him that you need ADT again. How often will he test you? I believe that you should be tested often enough that, if your PSA starts to rise you'll find out about it quickly enough to take action before it gets high. PSA+T tests once every three months might be reasonable. Will he put you back on Zytiga as well as one of the older ADT drugs?

And by the way, what is your current PSA?

Best of luck.

Alan

Jif1 profile image
Jif1 in reply to AlanMeyer

Thank you so much for your message. My psa has been 0.014 or undetectable

AlanMeyer profile image
AlanMeyer in reply to Jif1

Given that your response to the treatment has been essentially perfect, and that he isn't giving you any T supplements, my guess is that your oncologist is not trying to improve your treatment by using BAT, but is just trying to give you a break from the side effects of the treatment. I think you need to ask him about that - how often will he test your PSA and T levels, what levels is he looking for to trigger beginning the treatment again, and what treatment would he want to use, leuprolide only, e.g, Lupron, Firmagon, Zolodex, etc., or leuprolide + Zytiga.

If you don't mind the side effects of treatment, an argument could be made for staying on the treatment and forgoing the vacation.

I hope your good luck with treatment continues for years and years.

Alan

Jif1 profile image
Jif1 in reply to AlanMeyer

Alan, thanks so much for your response. I have been off all meds, including ADT since last July. PSA has been holding at 0.014. I will be sure to ask him those issues that you raised. Appreciated. What’s your situation?

AlanMeyer profile image
AlanMeyer in reply to Jif1

I'm hopeful that my cancer is completely cured. I was treated with radiation in a clinical trial of MRI guided high dose rate (HDR) brachytherapy + external beam radiation + Lupron in 2003-2004, for a Gleason 4+3 PSA 10+ cancer. My PSA has gone up and down but never went above 1.8 after treatment. My lowest reading was 0.07 and my last reading was 0.19. I've had no treatment since 2004. I'm closing in on 75 years of age. I therefore think I have a good chance of dying from something other than PCa, and with no additional treatment.

Although I don't worry about my own PCa, I spent 26 years working as a computer programmer at the National Cancer Institute and I still feel an obligation to try to help cancer patients when I can - which is why I participate in this forum.

Regards,

Alan

Jif1 profile image
Jif1 in reply to AlanMeyer

Thank you Alan: I wish you well! I am 79, and was diagnosed in 2005, prostate removed Feb. 2006. So far, so good. I just do not want to go back on any treatment.

Jif1 profile image
Jif1 in reply to AlanMeyer

Again, thanks so much for your enlightenment. My Testosterone score has gone from 2 then 4.4 last fall, to 297 this past January, to 514 last week. Not sure what effect that will have on my “sexual functioning”, but have not felt any “activity” or “sensitivity” down there.

kaptank profile image
kaptank

The best evidence is Morgentaler, but it has been accumulating for 30 years. The "testosterone is fuel for cancer"hypothesis has no evidence. There is much we don't know about how PCa andT interact. But there is a clear conclusion that generally PCa loves a environment of T at the level of those with hypogondism, ie well in the lowest 50%. Units for measuring this vary from country to country. Generally if you are in the lowest quartile of the normal range that is the ideal place for your PCa critters. You should either be well below this (castrate) or performing some experiment with supraphysiological T. Are you on ADT?

kapakahi profile image
kapakahi in reply to kaptank

I'm curious about this theory. After my T was found to be below 200 (the doctors said it was possibly due in part to a varicocele that was strangling one testicle that is now atrophied and partially strangling the other one) I was put on HRT for about 10 years - and subsequently my T was regularly above 700 and sometimes up to 1500. I felt terrific, had lots of energy, was really strong, could surf and bike and lift and play tennis and screw for days, was always in a good mood, it was wonderful, I felt like the real me after years and years of premature decline. Yet after about 10 years I still developed PCa. Now my T is back down to 200-300 and I feel like crap, and have for the 12 years I've had PCa. I would love to get back on T, but I've never had metastasis that I know of (I suppose there's always the possibility that some escaped but my immune system killed it, but it never showed up on any scans or anything), and I'm leery of risking a spread. But I know I'd feel more like myself with much higher T.

addicted2cycling profile image
addicted2cycling in reply to kapakahi

kapakahi wrote >>> " ...I was put on HRT for about 10 years - and subsequently my T was regularly above 700 and sometimes up to 1500. I felt terrific, had lots of energy, was really strong, could surf and bike and lift and play tennis and screw for days, was always in a good mood, it was wonderful, I felt like the real me after years and years of premature decline. Yet after about 10 years I still developed PCa. Now my T is back down to 200-300 and I feel like crap,... "

I am going to address the ^^^^

I get a Cypionate (T) injection every other week. From past testing results my "T" levels at time of injection is in the 550ng/dL to 650ng/dL range and following the injection jumps to 1,600ng/dL +/-. I DO NOT FEEL ANY BOOST following the injection and HAVE NOT IN THE 5 YEARS I have been getting the injections following my Gleason 10 PCa treatment. Treatment was in 2015 and consisted of Surgical Castration, Cryoablation and an Immunotherapy Injection.

My most recent BLOOD WORK taken for my 3 month PCP check-up yielded a "T" level at 100ng/dL because I SKIPPED MY SHOT by 1+ week's time and I was long distance (100+ miles each time) bicycle riding. At 100ng/dL I was feeling the LOW "T" EFFECTS and 1 week later with my levels in the estimated range of 40ng/dL from prior experienced effects and testing results I was still able to bike 121 miles for an overnight FULL MOON RIDE last Fri/Sat. I received my "T" injection on Tuesday 2 days ago and have yet to fully obtain a comfort zone feeling expecting my "T" levels ARE NOT recovering normally due to the extreme low point I purposely reached AND MY RIDING.

ONCE AGAIN --- NEVER HAVE I EXPERIENCED A BOOST following any "T" injection.

Jif1 profile image
Jif1 in reply to addicted2cycling

Thanks for your comments. My T count in January was 297. I am getting another test next week. In the meantime, I bike 3x week (ave 10 miles), walk (ave2-3 miles 3x week) and swim daily without any energy issues. However, my concern from what I am reading here, is that low T count could be feeding any dormant or hiding cancer cells. Guess I need to keep monitoring. What do you think?

addicted2cycling profile image
addicted2cycling in reply to Jif1

Jif1 wrote >>> " ...However, my concern from what I am reading here, is that low T count could be feeding any dormant or hiding cancer cells... "

Reading published reports on the good and bad results of having low "T", no "T" or high "T" is "clear as mud" just like "what is the best treatment for 3+3 or 3+4 or ??? whatever."

"Do due diligence, make a choice, pays your money and takes your chances." In my case I went for "a one off experiment treatment plan" that very well could bite me in the butt, but in the mean time I seem to be doing good in comparison to results from having ADT, Chemo, Radiation, Surgery

kapakahi profile image
kapakahi in reply to addicted2cycling

I was using a T cream, and I never really felt a "boost" after putting it on - I just felt normal. I'd always done my sports long before I began using the cream - I think what I felt the most was a feeling of well-being, less tiredness and malaise, and a better disposition. All those feelings - including sex drive - had gradually declined over the years so I didn't really notice the decline day-to-day, but when that sense of well-being returned, I did notice, but not in the way a stimulant drug gives you a boost. It was much more gradual. Just...I don't know...normal, and good.

addicted2cycling profile image
addicted2cycling in reply to kapakahi

It's interesting how the addition of "T" affects individuals differently. I just finished a 71 mile bicycle ride that was crazy windy and this is where/when the "T" injections help. Recovery WILL NOT BE LIKE PRE-ORCHIECTOMY days but it will be far better than without.

OOPS: and having some RED ORGANIC with my sweet potato, sardines 'n salad with curry powder 👍👍

Jif1 profile image
Jif1 in reply to addicted2cycling

Wow! You are a biker. How old are you anyway? I am 78 and bike 10 to 12 miles comfortably. Probably could do more, but am ok with what I do.

addicted2cycling profile image
addicted2cycling in reply to Jif1

You're doing GREAT !!! 71yo on July 10th and as I have done in the past, my Birthday Bike Ride will be twice my age plus 1 for good measure in miles. Last year 141 miles so 143 this year. HOPING that I don't live to be 100yo. 😄

Jif1 profile image
Jif1 in reply to addicted2cycling

Now, I have a new role model, YOU! However, I will have to work up to my next birthday in November (79) and start adding miles each time I go out. The challenge here in Fort Lauderdale, is the heat/humidity.

addicted2cycling profile image
addicted2cycling in reply to Jif1

Other coast here with great riding in Rotonda West. 97 miles of roads if every one is hit, been there, done it, done it, done it ---- lol since I don't mind re-peats. BTW, you could always go for a birthday ride in km's instead of miles. 👍

Boywonder56 profile image
Boywonder56 in reply to addicted2cycling

whats your psa

Jif1 profile image
Jif1 in reply to Boywonder56

0.014

addicted2cycling profile image
addicted2cycling in reply to Boywonder56

PSA 1.5 still have left half of prostate

Jif1 profile image
Jif1 in reply to kapakahi

Thanks for the response. Sounds like you had a “good run” those 10 years. What if anything are you doing now? What is your PSA?

kapakahi profile image
kapakahi in reply to Jif1

I'm just slogging along now. PSA is about 1.3. Each time my doctor agreed to let me try T again, the PSA just shot up. Dang!

Jif1 profile image
Jif1 in reply to kapakahi

What was your method of trying T in the past And why were you trying to increase your testosterone

kapakahi profile image
kapakahi in reply to Jif1

Like I said, my T was found to be low - a blood test ordered by my doctor (also found low thyroid). A total surprise to me, I had no idea before that, never thought about T, never tried to raise it. That was when I started using the prescription cream (I don't like shots or patches) made by a compounding pharmacy.

addicted2cycling profile image
addicted2cycling in reply to kapakahi

kapakahi wrote >>> " ... a blood test ordered by my doctor (also found low thyroid)... "

Are you on Synthroid for THYROID issue? I had half of THYROID removed years ago before PCa hit.

Jif1 profile image
Jif1 in reply to addicted2cycling

I am not on any thyroid Rx, but had blood work today to see how my thyroid is doing.

addicted2cycling profile image
addicted2cycling in reply to Jif1

Messed up THYROID can wreak havoc with one's body. Hope your numbers are within limits.

Jif1 profile image
Jif1 in reply to addicted2cycling

My thyroid test results indicated normal.........

addicted2cycling profile image
addicted2cycling in reply to Jif1

Hoping your results continue to remain NORMAL thus removing a variable from the "why do I feel this way?" equation.

kapakahi profile image
kapakahi in reply to addicted2cycling

yes, taking levothyroxin - TSH bounces all over the place, and I can feel the effects when T3 drops too low, so I have to keep track of it

addicted2cycling profile image
addicted2cycling in reply to kapakahi

kapakahi wrote >>> " yes, taking levothyroxin... "

OUR former (before Medicare) PCP AND STILL VERY-VERY GOOD FRIEND and an extremely knowledgeable Doctor --- *WOULD NOT ALLOW US TO TAKE LEVOTHYROXIN* for our Thyroid issues. SHE INSISTED that we take Synthroid.

kapakahi profile image
kapakahi in reply to addicted2cycling

Did she give a reason for using only the brand name? I've suspected the quality of levo for years because my TSH and T3-T4 levels should be bouncing around like they do and no doctor has been able to explain it. I wonder sometimes if the generic isn't always from the same manufacturer or even has the same ingredients. I don't think I could afford Synthroid though and I'm sure my insurer wouldn't pay for it - I have to fight with them over the most mundane drugs, they question my doctors' prescriptions and try to get them to prescribe cheaper ones, even cheaper generics.

addicted2cycling profile image
addicted2cycling in reply to kapakahi

kapakahi wrote >>> " ...I've suspected the quality of levo for years... "

WHAT dosage are you taking??? Most individuals WILL NOT HAVE AN ISSUE with Levo and just requires time/dosage trial and error experimentation. When it comes to how drugs/foods/liquids react in the body AS A WHOLE she gets down to the "nuts and bolts" to make sure everything works in harmony. >> NOT THE AVERAGE DOCTOR'S OUTLOOK towards a patient and one of the reasons she went to a Concierge Structured Practice. An office visit -- AT HER HOME-- is often at least 2 hours long.

P.S. >> TIMING FOR TAKING SYNTHROID/LEVO is critical as is the food/drinks consumed up to 4 hours after downing the pill.

kapakahi profile image
kapakahi in reply to addicted2cycling

just got raised to 125mcg from 112mcg for the last year when TSH rose 200% though T4 was "normal" -

started 20 years ago after Hashimoto's diagnosis with pure thyroid, which was hard to dose properly (e.g. heart racing), then switched to levo at 175mcg, gradually reduced over the years to 112mcg but with intermittent increases followed by decreases depending on blood tests - always taken first thing in the morning at least 1 hr and usually 2-4 hours before breakfast (always just a whey protein drink). Doctor (endocrinologist) said it's likely my thyroid is mostly destroyed so dosing is problematic and always will be.

addicted2cycling profile image
addicted2cycling in reply to kapakahi

kapakahi wrote >>> " ...likely my thyroid is mostly destroyed so dosing is problematic and always will be."

I"m thinking that if there was any possibility of remaining thyroid short circuiting things, I would have it removed.

GOOD LUCK

in reply to kapakahi

That is the fear for the undetectable .. I’m at 3 t for over five years now . No one tells me to stop the adt that I’m still on.The fear is that APC will return with rage ... been there done that! Until APC stopped me in my tracks, i wasn’t afraid of much in life .

Jif1 profile image
Jif1 in reply to kaptank

Thank you for your response. I was on hormone therapy for two years, ending last July. I am not on any treatment now as I have been told that I am “stabilized” and have not evidence of cancer. I have been with PC since 2015, but still waiting for the shoe to drop again. I had a reoccurrence twice in that period.

AlanMeyer profile image
AlanMeyer in reply to kaptank

I'm not a professional scientist and, although I've read some very good books about it, my understanding of molecular biology and cancer biology is limited. Furthermore, the scientists themselves still have only limited understanding of the complex biology of testosterone ("T") and prostate cancer, although their knowledge keeps increasing year after year. With those caveats, here's my understanding of what happens with testosterone and prostate cancer.

T is a small molecule (see "steroid" and "endocrine" in the Wikipedia) that acts as a signalling molecule. It doesn't "fuel" or "feed" cancer in the same sense that food feeds animals like us, but when it enters a prostate cell it interacts with other molecules that affect DNA translation, i.e. the process that causes genes to generate the chemicals that cause proteins to be produced. In the case of T and cancer, it is proteins that signal the prostate cells to replicate that are produced in response to T.

Normally, cells respond to a variety of conditions that can either promote or prevent cellular replication, but cancer cells are typically deficient in their ability to prevent replication. However, by preventing the tumor cell from receiving testosterone, we can greatly reduce the activity of tumor cell replication, preventing the cancer from spreading and reducing the activity of the tumor cells, even killing some of them. As far as I know, high T doesn't cause cancer, but T levels above certain amounts can help existing cancer to spread. T levels above some limit (150 ng/dl?) are enough to fully signal cell replication. T levels beyond that limit aren't any more effective in stimulating the growth of cancer. At some level, T is signaling all it can signal and adding more doesn't change anything.

There are two current ways of preventing cells from receiving T. One is to prevent T from being produced. This is done by leuprolides like Lupron, Zoladex, Trelstar, and Firmagon, and also by Zytiga - which works in a totally different way but has the same effect of preventing T from being produced. The other way is to prevent the cells from importing T into the cell and into the nucleus of the cell where the DNA resides. That is done by Casodex and Xtandi.

If I remember correctly, T levels below 20 are considered to be at "castrate" levels, but some drugs like Firmagon and Zytiga can get it way below that and Xtandi is particularly effective in keeping it from entering the nucleus of cells.

Hormone therapy (repressing T) can be wonderfully effective for some period of time. For some men it is effective for decades. For others it only works poorly and for a short time. But what I've written above is the conventional theory of T and prostate cancer. New discoveries are adding a lot more information. For some men it has now been shown that high T, or alternating high and low T, can actually fight prostate cancer. There's still much to learn about this.

Alan

addicted2cycling profile image
addicted2cycling in reply to AlanMeyer

AND YET, stealthy/adaptive PCa cells continue to find a way to flourish.

Jif1 profile image
Jif1 in reply to AlanMeyer

Thank you very informative. What you wrote about or questions I’m going to discuss with my medical oncologist next week. I am concerned because my T scores for the past two years I’ve been like two and four but this last January they were 297. And I stopped taking Lupron hormone injections last July.

So while my PSA is 0.014 undetectable other people on this website have written that that’s not the way to monitor oneself and actually one of them posted a detailed research study on the subject. They’re suggesting more bodily scans be a PSMA and the like.

So I guess I’ll wait to see what my medical oncologist says and then decide what to do after that.

Thanks again very helpful information

Jif1 profile image
Jif1 in reply to Jif1

Latest T count: 514, up from 297 last January.

Boywonder56 profile image
Boywonder56

Ill just add my 2pence...i had low t at 45 yrs old t was around 150...did t therapy got it to around 400....felt better continued for next 20 yrs....also checking psa...started at 1.4....in 20 yrs it was 5.6....went to uro .....biobsy.....agressive ductal hystology p.c.

Was i feeding a already present p.c.....im not that smart....b.w

Jif1 profile image
Jif1 in reply to Boywonder56

Thanks for your comments. How are you now? PSA?

Boywonder56 profile image
Boywonder56 in reply to Jif1

My last was .05...been 4yrs lupron/ erleada am in titan trial....in open label phase...thats all ive done prostate still in place..ductal variant in hystoligy is kinda rare and very aggresive but i think being able to get in titan trial at almost dx is what has kept me alive starting my 5th yr on the combo..it was not available for mcrpc at that time and just irish luck didnot get placebo...qol sux as bone aches ,weight gain, brain fog , and just general no energy but aint pushing daisys as my prognosis was not good...b.w

Jif1 profile image
Jif1 in reply to Jif1

I am ok now psa 0.014

Jif1 profile image
Jif1 in reply to Jif1

But concerned about reoccurrence. My cancer has come back twice in 15 years. I’ve been reading that a lot of guys have stayed on hormone therapy I stopped at almost a year ago.

Boywonder56 profile image
Boywonder56

mine was metastatic....

Hey Jif1! Congrats on undetectable . That is the best outcome after what you’ve already been through . Some have stayed undetech on adt for a decade and even more .. stopping adt is a risk ...Everyone of us would love to be running on full t again. Unfortunately APC can revive from the undetectable mode ... there can be 2-3 million pc cells not seen by any scans at any point in time . It’s all a gamble a war of attrition in buying more time here . Good luck friend . You’re doing well 🏋🏽‍♂️👏

agyoung profile image
agyoung

Hello Jif1,

I don't have an answer but I do have anecdotal evidence from a patient of one.

My T level after removing the prostate, 79 grays of radiation, and 3 years of Kasodex and sodium bicalutimide, my T averaged about 87. That was monthly testing. For no known reason it fell to 11 ng/dl and stayed there for 3.5 years. I was able to function fine at 87. Enough energy to continue my career as an airline pilot. But when it dropped to 11, it stayed at exactly 11 monthly. Finally Dr. Sartor gave me the choice of Androgel or not. He saw the miserable quality of life I was living ( I didn't) and began. The T level rose the first month to about 180, the next month 494, then back to 110, and then up to 890, and then back down to 110. Last month it was 1056. I felt wonderful. I just had it checked again and it was 154 3 days ago. The application is the same time every day, completely dry skin after a shower. Dr. Sartor believes that my testes quit a long time ago and the resulting T of around 80 was due to the adrenal gland. When it went on strike the level dropped to 11. Dr. Sartor doesn't think Androgel at two pumps a day will raise the T more than 400. My question is why am I getting 800-1056? It is difficult, for me at least, to deal with these varying amounts of T. The absence of T seems to affect me more than most ( Dr.s opinion) so these changes can be very troubling. I can tell, unquestionably, when the T is low. And I hate it. The corollary is the PSA was rising linearly up until two months ago. Now it is taking an exponential turn. So, Im not sure what is next on the game plan.

Good luck with your quest for knowledge.

Alan

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of testosterone. I have been off ADT now for 12 months. Testosterone is 10 up from 4 in last two...

Testosterone levels !!

sessions of radiation (2 Gy/session). My testosterone levels have now fallen to 13.76 ng/dL where...