Why I Chose To Forego Androgen Deprivation Therapy

 When a man is diagnosed with PCa, especially metastatic PCa, the first go to for oncologists is usually Androgen (Hormone) Deprivation Therapy (ADT) which can be accomplished in men one of two ways: 1) orchiectomy or the surgical removal of the testicles or 2) taking drugs that turn off the production of testosterone.  Fortunately, most patients choose the 2nd option.

When I was diagnosed in March of 2014, I was told in no uncertain terms by more than one physician, that I had an aggressive PCa and it was already in both lungs as well as pelvic lymph nodes and seminal vesicles.  I was initially offered ADT using Lupron, which was administered 2 times over the 8 months I took it.  I handle injections and blood draws like a champ, but the Lupron injection was unusually painful both times.

At the end of the year, after an 8 month trial as well as going through 6 rounds of newly approved chemo for PCa with mets, I decided I would no longer take ADT.  It was simply too rough on me physically but even more so, mentally.  The malaise, the depression, the loss of muscle and gaining of body fat, the hot flashes, the cold flashes and my emotions run rampant as well as cognitive dysfunction...all of these things proved too much for me to consider living with the rest of my life.  

Did it negatively affect me sexually?  Yes.  After about 3 weeks of being on it, I had no sex drive or desire. I didn't even think about it and had to literally write myself reminders to be intimate with my husband.  But that wasn't THE major reason I wanted my testosterone back.

"Fatigue, loss of muscle mass and bone density, loss of body hair, emotions played havoc with, weight gain, hot sweats and flushes. Effectively it feels like you’ve become a menopausal woman overnight, and that simply magnifies the loss of masculinity."

A female oncologist I consulted with a couple of years back before SBRT treatments made the statement to me that you "can't take a relatively young man's testosterone away and expect him to thrive.  It's an important hormone for more than just sex."

I may have to go back on ADT at some point as a palliative measure if/when my unwanted resident decides to metastasize to my bones and my palliative doc and I have discussed limited use of it.

But only if I see no other way.

Meanwhile, I am quite empathetic with menopausal women.

https://prostatecancer.net/living/hormone-therapy-sex-life?utm_source=weekly&utm_medium=email&utm_campaign=307b2076-5695-40c4-8f22-cca66a5d118b&utm_confid=sovkmsupw&aGVhbHRoIHVuaW9uIGJsYWg=569545217a1113b029a72ef9f8892817e232093fe306442f269a3bc295d82886

Survival. It Can Be a Good Thing

 

I'm grateful to say (knock the proverbial wood) that like those of you reading, I survived 2020, COVID and isolation.  I plowed through the lack of interaction with others as well as exercise, lack of nutritionally diverse meals and overall generally less than ideal circumstances, particularly for those of us that live with chronic, serious conditions.

I survived an assault by a bail agent in my home who was looking for someone else. Survived some type of mild blood poisoning.  Survived an abusive landlord situation.  BUT!  Moved into a loving, family situation recently and am so very grateful.  Survived.

I survived losing several people (none due to COVID, but too many to Big C), including one of my dearest friends ever. Pancreatic and took almost exactly 1 year to be diagnosed, "treated" and die. This one will take a while to grieve over. 

I've survived  And so have you.  Good on each of us.

I'm three weeks out from Dose 1 of Pfizer COVID vax and will get the second in about ten days.  By the end of the month, I should be well protected but will continue to follow masking and sanitary guidelines as I refuse to be a spreader.  I will get out, but still with caution.  Perhaps a bit more confidence?

But doing so means I need to see where things are at with my unwanted guest and my last in person visit with Palliative Doc/Advisor and set of bloodwork was in Sept/Oct 2020. I got the blood work done yesterday and see the P Doc Monday.  Here's what I know from the blood work:

    * my basic CBC and baseline metabolic a look good.

    * PSA is up, but not as much as I expected (yay?).  From a 26.6 ng/ml in Sept to a 37.4 this week. 

Given my poor diet and the stress of the last few months, I expected it to have jumped substantially more than that.  It'll be interesting to see what the Doc says.  I'm guessing we'll do some additional imaging just to ensure that no tumor is getting ready to perforate anything.

How have I been physically?

Overall pretty good.  The usual culprits, fatigue and foot/hand/limb pain remain and have gotten a bit worse.  I still keep walkin'. As a friend reminded me yesterday, fatigue and being "kinda tired" are two, distinctly different things.  Neuropathic/joint and bone pain are also a different kind of pain than arthritis, etc.

I continue to urinate rather well particularly if Flomax is on board....so I try never to run out. Sometimes a bit strained and/or difficult/extraordinarily painful, but fortunately those instance are not too often. Very little, if no urgency issues.

Erectile function is good, even without ED meds.  I do take 40 mg of sildenafil daily (like vitamins!) to ensure blood flow to my old and valued friend.  But I'm grateful to have good function for a 59 year old, 7 year PC patient.  The odds are against men, even without PC, in this area.

I have some mild bleeding during BMs at times but I'm 99% sure it is a small, internal roid that is a result of using pain meds for sometime.  I'm trying to heal it naturally because proctologists......well....yeah.

All that said, for a guy that was told he didn't have long even IF he followed all physician recommendations, I'm doing OK. That was 7 years ago!  It makes me wonder if so much of what men with PC are offered/put through really makes a difference as to longevity.  The studies suggest not and I chat regularly with men, older and younger, who have followed every piece of doc advice, from radical prostatectomies to multiple hormone drugs (ugh!) to implanted radiation to orchiectomies (look that one up).  Each of these could have it's place, but I fear that too often men are steared these directions for the sake of profit rather than what the evidence is.  Fear of death is a powerful motivator.

What I can tell you is that I did the chemo for 6 rounds as well as 8 months of castration "therapy" the first year and then, 5 years later, did 5 rounds of SBRT (look it up...highly focused, high intensity atomic assault but almost 100% on just the target).  That's it.  That's all my "western" treatments. So far, so good.  The side effects were less than I expected, I have testosterone (* to all those who say, "You look SO good"....I think if I have even a remote claim to that, it's because I have T in my veins.), I hurt but I've hurt for most of these years. I'm fatigued but it's become just a part of life.

Is it high dosage cannabis/cbd that has slowed all this down?  I don't know but I have little to no other explanation.

I'm fortunate.

So I survive and am grateful.  How this has worked out compared to what I was told to expect are not the same.  I hurt.  I'm drained much of the time.  But I can still get out some, do normal tasks, I walk like a nerd in pain....oh, I am a n ierdn pain.  But I'm doing quite well all things considered and feel so very fortunate.

Readers can always feel free to contact me.  I think the blog is around 40+ thousand views from around the world and I've had the honor of answering numerous men's and women's questions.  I'm an open book so feel ok in reaching out.  I've become far more of an expert on the topic than I ever wished to be ;)

Best wishes and peace be with you.