Testosterone shots

[Genog]

My husband, Has been fighting this for a while he has had a few different treatments now they want try shots of testosterone? Has anybody done this?

[mrscruffy]

Are they doing BAT?

[Genog in reply to mrscruffy]

I don’t know what that means… That’s what I’m hoping that the site will help me to understand and take better control of my health. Any input you can give me is helpful.

[mrscruffy in reply to Genog]

Bipolar androgen therapy, I am just now learning about it. If no one here chimes in Google it

[Genog in reply to mrscruffy]

Thanks! I am learning so much here!!!

[Tall_Allen]

Would you mind providing a little more background? Does he have metastases? How many? Where are they? He has had brachytherapy and external beam radiation?-- what else? Has he had a confirmed recurrence or just elevated PSA? Is he taking hormone therapy? Who wants to give him testosterone?

[Genog in reply to Tall_Allen]

So 3years ago we found out it is spread to bone, spine, lymph nodes, we did Holistic for a while ( which was great but we could no afford to continue. He had Brachytherapy and external dart. Then seed implants. He had a clean bill of health, for about 7 months Then it came back to shoulders, and Trigeminal nerve in the face. His blood work is not good either. Dr Dattoli referred us to a hematologist oncologist, that tried Lymparza, I am assuming his blood was not good enough to handle it and he landed in the hospital, needed a blood transfusion, he stoped taking it. Now the next suggestion was to try the testosterone shots. We did one and his PSA jumped up 50 points, but the doctor said that’s typical(?). Right now he has incredibly bad leg pain. Thank you for you input!!

[Tall_Allen in reply to Genog]

What kind of crazy doctor is giving him testosterone shots? Of course that is causing his metastases to flare up. Please find a real medical oncologist at a top cancer center. If you are in Florida, Moffitt would be a good choice.

[pjoshea13]

The only scenario I can imagine is that the shots will be used in conjunction with androgen deprivation therapy [ADT]. What else is he on.

A number of men here have used bipolar androgen therapy [BAT].

In clinical trials at Johns Hopkins, the patients had to be asymptomatic, because symptoms are likely to worsen.

When I began BAT I had no symptoms, but leg pain developed after 3 months. I had to modify the BAT cycle & the pain soon went away.

His PSA jumping 50 points is not in itself a concern. However, IMO, one should only get the next shot. when ADT has returned the PSA to its previous level, or lower. In your husband's case, perhaps much lower.

What is the testosterone dose & how frequently has he been getting the shot? Is it testosterone cypionate?

You mention Dr Dattoli. A number of men here probably know him because of his association with Dr. Myers. I was sorry to read of his troubles.

Best, -Patrick

[Genog in reply to pjoshea13]

It is 400 mg of Testosterone Cynionate once a month, only had one and is due for another!

[pjoshea13 in reply to Genog]

His doctor is following the Denmeade (Johns Hopkins) BAT protocol.

As I mentioned before, I believe that the T-cyp shot should be delayed until the PSA has fallen to at least the level it was at the time of the first shot. In addition, to spare your husband the leg pain, it should be brought down even further, & 200 mg of T-cyp should be considered.

Denmeade believes that 400 mg will get T level to about 2,000 ng/dL (twice the normal high) & will induce DNA double-strand breaks in the cancer cells. 200 mg T-cyp will get his T level above 1,000 ng/dL, which is quite enough to shock PCa cells that have become used to low levels of androgen. And, importantly for your husband at this point, 200 mg will clear from his body faster than 400 mg.

Just an opinion, of course.

-Patrick

[Genog in reply to pjoshea13]

Thank you for the comment about Dr. Dattoli, we really love him. I hate to sound really stupid here but what is MO stand for? PS, our daughter is married to an O’Shea,

Mike

[Shooter1 in reply to Genog]

MO-- Medical Oncologist-- lots of abbreviations used here.. Best of luck with BAT.

[addicted2cycling in reply to Genog]

MY 1ml injection of Cypionate 200mg/mL bi-weekly injections result is 1,600ng/dL following the injection

[kaptank]

Is he on androgen deprivation therapy (ADT) that lowers testosterone to castrate levels? I assume he is because if he is not the doc is a quack and you should run away. There are a number of things that do the job. Tell us what he is taking. ADT is first line therapy.

It sounds like BAT to me but I do not understand the sequencing. Is it before taking enzalutamide? Or after? I caution against taking PSA 1 month after the first shot of T. The results are totally unreliable and usually horrifying. PSA 1 month after the second shot (just before the 3rd) give better reading. Then take the 3rd shot and get PSA 1 month after that. That will give info on whether to continue or not.

Has he taken blood test for testosterone? It is important 2nd day after the 1st shot to calibrate dosage. He should also have T just before the 1st shot and 1 month after just before the 2nd shot to get baseline castrate levels.

BAT can cause pain for bone metastases and if in pain before, expect it to increase. The pain is due to inflammation, not the cancer itself and reduces as T levels diminish.

If those things have not been explained, run away!

A haemotological oncologist is the wrong person for prostate cancer but the right person for haematological problems. But for prostate cancer you absolutely need a prostate cancer oncologist and one who specialises full time, not someone in another field.

[CSHobie]

Is the Dr doing SPT?

One would think the Dr would give the patient more information on what he is planning to do.

[Fightinghard]

Please get to moffit in tampa if you can. Top notch MO specialists there.

[ARIES29]

I asked my MO the other day about taking Testosterone supplements now I am on a ADT vacation with a PSA of 0.3 & he said a big NO!

[j-o-h-n]

Greetings Genog,

Would you please be kind enough to tell us his bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help him and helps us too. When you respond, copy and paste it in his/your home page for his/your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/11/2022 10:17 PM EST

[Genog in reply to j-o-h-n]

Hello John,I am 69 years old, moved to Florida after being told there was nothing they could do for me, from 3 different top notch hospitals in Chicago. First diagnosed in 2016 at stage 1... we went to hear option treatments and did not like them!We did research on holistic, and wanted to get treatment from CDH on the beam radiation, my insurance kept declining it. So long story short when I went back to the urologist, it was 4th stage and had spread to spine, bone, lymph nodes. No Drs wanted to treat at that point.. one guy at Rush said he would do it... treat it very aggressively! I said no, and moved to Florida, I did Holistic for 7 weeks, I really liked it and felt healthier and stronger then I have in years, but to my surprise my cancer was the same ( a little worse) From there we found Dr Dattoli, wonderful DR. I was given "dart" therapy to target the cancer and then seed implants. I also had hormones to kill all my testosterone, etc.I was cancer free for 7 months (2020). Then it reoccured in my shoulders and then my trigeminal nerve in my face. Again dart radiation was given. my shoulders are fine, my face is still numb. He thought the drug LYMPARSA would help, he referred me to a Hematologist oncologist. The guy gave me Lymparza, that was not good for me, I had a bad reaction and ended up in the hospital.

Next he told us about the T shots to confuse cancer. After reading this blog I see it can cause leg pain, which I have!! Also my PSA jumped 50 points to 190!

I think if I remember my Gleason was 3-4 not sure... but PSA is now 190! It was 0.4 for 7 months and has been going up slowly until now.

Thank you so much for any help or suggestion, I do not have a lot of confidence in this new guy. Also my blood work is very anemic. He wants to do a blood transfusion this week, They gave me one when I was in the hospital. it helped me feel better.

Sorry this is long....

[addicted2cycling in reply to Genog]

I'm in SW FL, a 7yr GL10 under Dr. Onik out of Fort Lauderdale. Not sure if you wanted to look into his practice but you can Google search him or on YOUTUBE there are videos of the operation where he's directing another doctor while on a Spinal to administer his own Immunotherapy Protocol for his metastasized PCa. At this moment he is in Armenia treating patients but I'm sure staff would assist.

[Genog in reply to addicted2cycling]

Thanks!

[Longterm101 in reply to Genog]

Are u still using datolli ?

[Genog in reply to Longterm101]

We just see him 2xs a year for a check up and blood work. I know he has had a problem, but we trust him, we have had a great experience with him and his staff.

[j-o-h-n in reply to Genog]

Thank you for your quick and detailed reply. Would be helpful if you copy and paste your bio onto your home page here in H.U.

It appears that most of the "experts" here are not in favor of you getting testosterone as part of your treatment. Heed their advice. Keep plugging away... you'll beat the monster...

Keep posting!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/12/2022 2:39 PM EST

[kaptank in reply to Genog]

I am really glad you are on ADT (hormone treatment to take down T). Unfortunately for most of us it is for life. Get a genetic test. There are some mutations that respond to particular treatments. It seems to me that you have many treatment options: abiraterone then chemo (docetaxel or cabazital and/or carboplatin (if you have a BRCA mutation) then enzalutamide or one of the more recent lutamide anti androgens. About then you could look again at BAT type treatment. I think your priority now is to get that PSA back down. Abiraterone/chemo. None of us should underestimate this disease. Aggressive treatment is necessary. Best of luck and please keep posting. There are a lot of people here with a lot of experience and our only interest is helping you manage the disease and sharing our knowledge and learning.

[Hidden]

Hi Genog, I'm surprised all of the comments above are focused on the testosterone shot and commenting in an alarming way that the doctor has done something wrong in prescribing the treatment. I think it is important to back up and see what was going on prior to the BAT therapy.

Getting referred to a hematologist oncologist suggests the cancer is in the blood and has morphed into a variety that is difficult to treat . Adding Lymparza, which causes serious anemia in a high percent of patients, also suggests your husband has BRCA or other HRR gene mutations. He was hospitalized and needing blood transfusions prior to the testosterone injections.

The high testosterone could have been given as an attempt to get his cancer under control without using chemo or other drugs that he can't have due to his abnormal blood counts. I hope his second testosterone injection stabilizes his psa so his blood counts can improve.

My husband's psa went up about 15% after his first BAT injection before coming down. That % isn't as drastic as the rise your husband experienced, but PSA can certainly go up before coming down. Listen to your doctor, he/she knows your husband's full medical history and current treatment options. Sending healing thoughts your way!

[Genog in reply to Hidden]

Thank you! I have learned so much on this website!!