My husband (on Lupron, castration resistant and tried every treatment) checked into the hospital 10 days ago for intense bone pain that requires heavy morphine. He has weakened bone marrow with low platelets and low red blood cells. He's getting palliative radiation for pain in a few places. Can't walk due to pain. The hospital team says we can consider hospice next. But I'm considering starting BAT with him although his oncologist disapproves, and I would have to do it without their knowledge.
I feel like we have nothing lose except it may cause him more pain. But he's on so many painkillers now anyway. He's going to die within the next few months and BAT may have a slim chance of buying him more time. Plus making him feel better because of testosterone's positive side effects.
I'm afraid because I don't want to hurt him anymore. And I would have to figure out how to inject him with a lot of T. I've already discussed BAT with someone on this site who wasn't as far along as my hubby and got good results. He told me all about his experience and I'm about to read the BAT book on Amazon by Russ Hollyer.
I'm on my own because his pain meds make him loopy, although in the past he's said yes to supplementing his testosterone but not specifically BAT. Anyone have experience with BAT that could fortify us in our decision?
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Chris_Ali
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That would certainly make his pain worse and his death sooner.
BAT has never been shown to buy men more time, and it has only ever been used in men who are asymptomatic.
In some men (about 30%) who are asymptomatic, it can possibly extend the time in which Xtandi delays progression. Here's a review of all the BAT trials to date:
Well I understand BAR helps some people. We’ve tried everything else, especially androgen deprivation. And if I use a gel form of testosterone, then it doesn’t stay in his system so we could stop at any time. He’s already zonked out on pain medicine. Not sure he would feel much more pain than he already does.
I’d hate to have him feel more pain. But I’d also hate for him to die and for me to think I could have done something.
"Well I understand BAT helps some people." No. There is absolutely no evidence that BAT "helps" men in your husband's situation. Testosterone has NEVER been given to men with painful metastases, because it would cause them to flare up and increase the pain. Yes, he could feel more pain than he already does. In fact, BAT has not been shown to increase survival in anyone, even asymptomatic men.
I understand your desperation, having been in your situation several times. But I'd hate to see you live with the guilt of increasing his misery during his last days.
have you ever had prostate cancer? Have you ever been testosterone deprived? Do you know what that feels like? Do you know what that does to your body? What expertise do you have? None other than you run a blog? You are cruel and ignorant.
Yes. Yes.Yes. A lot. You are the woman who killed her husband by giving him testosterone against the advice of his doctor! I thought you had disappeared back under the rock you crawled out of.
i am on BAT and I have to agree with TA. BAT isnt YOUR answer! I don’t know what is. I am so sorry for your situation. The doctors are giving him 2 months to live and have no more treatments. Clinical trials maybe but it sounds like he wouldn’t fit the criteria with only 2 months. I would not want more pain and meds to counter BAT bone pain flare up.
It’s the saddest thing to contemplate but it is unfortunately something most of us have gone through with loved ones. I am truy sorry you are going through this.
Take him home get hospice help, play his favorite music spend all your time with him and don’t forget to ask family and friends for help.
I am absolutely loving BAT but be advised i use testosterone propianate and do my own injections. It is non standard of care and there is no proof as to how long i will stay hormone sensitive.
Let me say it is great for my well being. My cancer loves being fed androgens, and I love that it is controlled at this time.
It will be very hard to quantify my results since we don’t have enough data on HSPC patients on ADT, plus darolutamide. We also don’t have data and probably never will other than an n=1 (me), or n= 4 (a few others doing similar).
So if i had a choice which i do, i would still absolutely do pBAT again.
I am presently doing a month of high T, then a month on Orgo and Daro.
I did that month of high T and as expected it PSA climbed to 2.08, then tried to do a month of low T woth orgo and daro + osterine and cardarine but i cut it to 3 weeks as i hated the side effects on my skin and energy levels. My PSA after 3 weeks of ADT was 0.67.
Presently i just tried another experiment of adding 150 mg twice/day of lynparza (olaparib) to my high T cycle since i have a RAD50 mut in germline and somatic MSH6-Loss. I could only do 7 days of olaparib as it just killed my energy (exhuasted) . Blood drawn and waiting on ultasensitive PSA. I will post.
I would have to say every single CMP CBCw diff are all green and closer to middle of the scale.
My thoughts are with you. BAT is not available in the UK on the NHS possibly for a good reason, this disease is cruel my husband has been fighting it for 15 years diagnosed in 2008, we are both 80 now and to a point he is still winning but treatment has taken its toll on his body ongoing Proctitis after radiotherapy, need to have some QOL, no good living if life is unbearable, my own personal thoughts. My husband had six treatments with good results of Lutetium but after 4 months PSA started to rise, not the miracle treatment we thought. He is now having R223 as no visceral mets, 4th treatment next week, just had CT on Saturday, he says he is feeling comparatively well, doing more normal things, up early, less fatigue so positive at the moment. The Hospice nurse did a home visit after a referral from the Oncology nurse and we have their number if we need help. Do get support from the Hospice who should help with pain management, thinking of you both Jan & Tony.
Low levels of testosterone are well-known to be associated with higher levels of pain. I take high doses of morphine every day for chronic low back pain, and the pain clinic is always measuring my testosterone levels to make sure they are high enough.
The monthly shot of high dose testosterone used in the BAT protocol may help him to feel better in other ways. Less fatigue, better mood, more energy, etc.
The BAT therapy has been reported to increase pain levels in some men, however.
I would give it a try for one month, and see if it helps. Then, take it from there.
The monthly injection of high dose testosterone is hypothesized to "reset" the PCa cells to be sensitive again to ADT therapy. So, it's important that your husband remains on ADT during this therapy, Lupron or Orogovyz.
You can make the best decisions for him. You can ease his path. You can comfort and love him as much as you can. You can give yourself permission to accept the future as it comes. You can care for yourself. All so valuable necessary.
I contacted Dr. Denmeade at Johns Hopkins, and received this response:
"We have seen therapeutic response and clinical benefit with BAT in asymptomatic patients. However, We do not give BAT to men with bone pain due to prostate cancer because BAT can make pain transiently worse.. BAT has never been evaluated for survival improvement in a formal trial. In the TRANSFORMER trial, survival for men who got BAT followed by Enzalutamide was 37.6 months vs 28 months for enzalutamide alone."
This is from the horse's mouth! Hope it is helpful.
I am following the advice of Denmeade like in the STEP-UP trial, the sequential dynamic version. Two months of T Cypionat, then 1 month with complete AR blocking by Darolutamide. PSA rises in the first two months to 3, then drops by AR blocking to 0.2. The name of the game is AR manipulation. Have been doing this for a year, the values are the same.
When you study this mechanisms, you realize that BAT AND ARSi should be the treatment, not BAT alone.
I add the PARPi Olaparib in the BAT periods because of all the DSB having the BRCA2 mutation.
In 7F you sees what happens when SPA and Enza alternates, control the cancer.
I have done that, Dr Denmeade has advised on the treatment, works very well.
It may not be a cure (nothing is) but I feel 100% better on BAT…I’m Close to 5 years now metastatic so I’m running out of options…For me quality of life is #1 priority…Going to give Provicto a try (maybe)…In the meantime having more energy and feeling like a man again is worth it.,,.Just my .02$
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Experiences with bone pain
Advice on BAT needed
