ADT Hormone Treatments: Our Collective Experiences

We have collective threads here to help our readers with treatments such as chemotherapy infusions and radiation treatments.

It's time to band together, and share SUPPORTIVE strategies and "lessons learned" that can help new readers navigate their way through ADT hormone treatments-- such as LUPRON, FIRMAGON, & ZOLADEX injections --- as common examples.

Hormone treatments remain a MAINSTAY treatment strategy for treating prostate cancer.

Some fellows receive ADT hormone treatments at diagnosis, some receive hormone treatments in combination with other treatments, and some fellows receive intermittent hormone treatments --- over the course of time ---- to keep renegade cancer cells in check and PSA levels suppressed.

This thread's intent is to share insightful experiences --- supportive advice --- and strategies that fellows discovered that help mitigate side effects.

To get things kicked off, I will share my initial experience & how impactful ADT shots were for me, upon diagnosis:

Diagnosed in my 40s, my initial PSA score registered over 100. A subsequent biopsy confirmed the presence of prostate cancer.

With my PSA skyrocketing even higher, my doctor stated an immediate treatment was needed. I was given an ADT hormone shot --- LUPRON --- on the very day I was diagnosed.

Time WAS of the essence in my case ---and the hormone shot could be given immediately.

For me, driving home --- despite the tough news from that day --- I was encouraged that I was already starting to BATTLE BACK against cancer --- with an initial treatment that was administered that very day.

Within a month, my PSA actually began to T-U-M-B-L-E!

Unbelievably, my PSA fell by over 100 points after the first ADT hormone shot.

I will never forget that moment. I had started experiencing night sweats, but that first ADT shot packed a mighty wallop!

The second month, my PSA fell even lower --- down to decimals.

This exceeded all expectations my doctor had --- and I was speechless when he revealed the new PSA score --- falling from over 100 down to decimal levels, within two months.

That's how my journey with ADT shots began back in 2013, and it's one of the reasons I am still here today --- kicking off this thread today, in the interest of helping other readers.

As with other avenues of treatment --- such as radiation, surgery, or chemotherapy --- hormone treatments can have some side effects.

I like the adage that reminds us all, "It isn't always EASY, but treatments --- in the long run --- can be WORTH it!"

Each treatment story is unique --- and I invite others to share helpful and informative experiences with ADT hormone treatments --- that can give other fellows first-hand insight to help them better navigate through these treatments, too.

Let's work together on this topic & create a helpful, supportive, & impactful thread!

My best to each & all ~~~
CYCLONE --- # Iowa State University

Hello, Jack64 ---

Your post is timely and welcome --- as ORGOVYX provides ADT treatment in a new way ---- medication taken at home, rather than an injection.

I think ORGOVYX represents a definite change in the treatment landscape!

Appreciative of your timely input, Jack64, and thank you for helping to kick off this thread!

CYCLONE - # Iowa State University

Appreciative of your first-hand experiences, SCHOOLPSYCH.

You took proactive steps to bolster fitness & energy.

My ADT hormone injections have continued --- like yours did --- while pursuing other treatments.

My hormone shots continued during my chemotherapy and radiation treatments, and also when I started taking ZYTIGA.

I have been on ADT hormone shots, continuosly now, for almost a decade.

We are both educators, and I have never experienced "brain fog" --- thankfully!

Like you, I have stayed active & this has been a great way to counteract the fatigue that can occur from ADT hormone therapy.

It's important to choose forms of physical activity you like, because consistency is important. Yardwork, a trip to the gym, bicycling, gardening, hiking, lifting some weights, treadmill ...

There's a great trail right next to my place, and a small recreational lake near my school --- and I also walk on weekends. I like to explore state and county parks when weekends roll around.

I also work as a volunteer, clearing tree limbs and branches off area trails, after storms. For me, it's extra incentive to get out on the trails!

I seem to maintain a very good flow of energy, thankfully.

For inclement days, I have walked inside the hallways of my school after a busy day. My school allows members of the community to walk inside the long hallways during the winter months.

I also have a stack of "one-day passes" to the local recreation center on days when the weather is inclement.

When on ADT hormone treatments, it's important to avoid "slips, trips, and falls" --- as bone strength can be impacted.

One of the greatest "life lessons" I EVER learned from a doctor came in these words, that he shared with me, as my treatments continued:

"The day you don't FEEL like exercising, is the day you need to exercise the MOST."

Simple words --- powerful message! Those words continue to resonate with me, years later!

Best to all ---- STAY ACTIVE!

CYCLONE ----- # Iowa State University

I got my first (and hopefully only) 6 month Lupron depot last Friday, so I'm one week in. I started IMRT on Wednesday. So far I don't feel a thing. I do walk at least three times a week after work and intend to increase the intensity of my exercise - IE elliptical and weights. Tring to live as normally as possible. Going hiking on Sunday. History in sig.

Best of luck and thanks for the thread.

Each post is appreciated here, and we're putting together those first-hand experiences ...

In answer to SCHOOLPSYCH's inquiry ...

Yes, hot flashes are common with ADT hormone treatments.

Mine are brief and occasional --- but I have some strategies that would help any fellow who experiences these. Here we go!

* For "night sweats" - I ALWAYS put two or three pillowcases on my pillows. I have a favorite neck support pillow & the extra pillowcases protect the pillows. Launder your pillowcases often.

* Ceiling fans - or a room fan - in your bedroom and living room - are worth the investment!

* Glass of ice water on the nightstand - works wonders!

* Cotton sheets and cotton pillowcases --- cool comfort! Remember the old advertising slogan for cotton? "COTTON - the fabric of our lives!"

* In the summertime --- cotton t-shirts and boxers and shorts or track pants.

* For social occasions, I wear casual cotton khacki dress pants, fashionable t-shirt, with a light cotton Oxford dress shirt, with the sleeves rolled up --- adjust the front bottons as you wish. It's a classic & comfortable & COOL outfit --- that works in most social settings. I also recently discovered GOLD BOND powder for men --- in powder or spray. Keeps me cool & comfortable on my trail walks!

* There are small desk fans for one's work space --- at home or in the office.

* I bring iced tea or water with me, on road trips!

These are some "easy-breezy" strategies that can help any fellow experiencing hot flashes from hormone treatments.

Mind over matter --- a "lemons into lemonade" mindset that I keep in mind --- a hot flash is a reminder that these treatments are helping me maintain my HEALTH GOALS!

Heading out on a Saturday afternoon trail walk right now!

C-Y-C-L-O-N-E --- # Iowa State University

That's a perfect question for your doctor, as each case is unique ...

I will state, that in my case, ADT hormone treatments were my first treatments --- and have continued without interruption since my diagnosis in 2013.

Along the way, other forms of treatment were introduced --- including chemotherapy infusions, and later a series of radiation treatments.

Throughout it all, my ADT hormone treatments continued, without interruption. I remember discussing that with my doctor.

I started ZYTIGA (Abiraterone Acetate) over six years ago, as well --- a daily medication. My ADT hormone treatments continue, as well.

Have you discussed radiation treatments for the metastatic lessons in your ribs and spine?

Meanwhile, ADT hormone shots have helped lower your PSA from 32 down to low decimal levels. It isn't always easy, but it's obviously helping you maintain your health goals. We're "in it, to WIN IT!"

With my best to you ~~~
CYCLONE - # Iowa State University

Steve, they have prolia and Zometa, and I would bring it up with your Oncologist. I get a zometa infusion every 4 months at the same time that I get my Lupron shot. They have over the counter products, but your hip might require something stronger.
Michael

Following RP just before Labor Day 2016 my PSA was reported as <0.1 and I was advised to have adjuvant RT within six months due to adverse pathology. At four months I had not yet regained any sort of continence, and my wife's lymphoma diagnosis put a damper on my progress. My RO recommended that I start Lupron and remain on until continent or after nine months, after which he expected little progress. My uro said I'd be on Lupron for three years, but I had read that 18 months was usually sufficient.

The testosterone surge hit me almost immediately, and I spent the next ten days or so master baiting (seriously!) and that remains the last time I had any sexual interest or ability. The hot flashes did not hit me for about a month. Also a lot of moodiness. My RO Rx'd Megace (synthetic progesterone) but my GP was opposed due to the possibility of blood clots. I agreed to be diagnosed with mild depression so that I could begin taking venlafaxine, which ultimately cut the frequency, intensity and duration of hot flashes by about half. It also helped stabilize my moodiness immensely. I am still taking venlafaxine today.

Adjuvant RT did not commence until nearly a year after RP due to complications with the AUS. Upon completion, my RO said that the RT would continue to work for another 6-8 months, and I asked if I should get a third 6-month dose of Lupron and he said it was my choice. I took it, extending ADT to 18 months and continuing my "throw everything at it" approach to fighting the cancer. The final injection was in January 2018 and I calculated that it should be out of my system some time in 2020, based on it's six month half life.

My PSA remained undetectable at <.008 for the next four years, and I continued to have my testosterone checked along with the PSA. I only had one testicle, resulting from an injury a decade earlier. No baseline T level was taken, even though I had inquired about it. My testosterone went up to 50-60 after a year but never any higher. I still have no interest in anything sexual. I admire beautiful women but have no feelings beyond that. I have daily hot flashes, usually in the evening and at bedtime. I have electric fans everywhere in the house but no longer carry one with me. I now consider myself a eunuch.

Thanks for the tip about using several pillowcases. It will reduce the washing or replacing the pillows.

...some other issues.

I got the Zostavax shingles vaccine a few months before I got RARP. 2 weeks after surgery I started leuprolide chemotherapy. A few days after the first injection I came down with a massive shingles outbreak (never had one before). Got the belt all the way around, still have the nerve damage (neuralgia). After the first round of leuprolide chemotherapy (2 & 1/2 years) wore off (another 2 & 1/2 years) I got the Shingrix vaccine. Soon after that my PSA went back up to 3.3 and I was put back on leuprolide. A few days after the first injection the Shingles returned with a vengeance - took a couple of months to fade. Left scars that time. My conclusion? Leuprolide chemotherapy stifled my immune system. Since I am now 4 months past the dotted line on Eligard, I will be getting that second Covid booster soon.

I noticed that I was losing muscle and gaining fat (as expected), gaining weight, fatigued, more peeing at night and wasn't as mentally sharp. I began to have more frequent skin problems and my nails began to grow in split up the middle (I have a fabric patch superglued on my right index fingernail right now so as to prevent it accidentally tearing off and bleeding again). That is when I began to research the 'side effects' of leuprolide chemotherapy.

To be brief, I found that leuprolide chemo completely shuts down the hypothalamus gland that sits on top of and is extremely connected to the pituitary gland. This drastically drops the levels of most hormone production. Yeah, testosterone and human growth hormone drop off to near nothing, which is what the therapist wants to slow/stop the PCa progression. Without the HGH though, you cannot grow muscle or neuronal stem cells. Without prolactin your kidneys don't know how much water to take out your blood so you get 'water weight gain'. The drop of thyroxin means a drop in the base metabolic rate and a gain in body fat. I had a link that went through all of these issues which I have previously posted here. It is informative.

Just for fun, my docs and I tracked a number of my pituitary hormones starting at the dotted line endpoint of my last Eligard injection. They were all close to zero, but returned to normal levels (except the T due to dead testicle) over the 2 &1/2 year recovery time.

I know that some of us here, like some of my doctors, do not like the term " leuprolide chemotherapy", preferring to call it "hormone therapy" or "androgen denial therapy". I address this with: leuprolide acetate is not a hormone, it is not naturally produced by the human body, it is a lab-made chemical that acts on the hypothalamus gland to do what I described above. When I Googled "Lupron" I got a series of questions & answers. One such was "Is Lupron a form of chemotherapy?" The answer was "Lupron is a drug given to some cancer patients. Since it damages both cancerous and normal cells it is considered a form of chemotherapy." Further, I get a copy of all of my medical invoices from my insurer. The invoice reads (as per instruction from the federal govt) "(hormonal) chemotherapy drug" and "injection of chemotherapy drug." Xtandi comes in a bright yellow bio-hazard bag with the bio-hazard symbol and the warning "Warning: chemotherapy drug. Wear gloves when handling and observe all bio-hazard precautions."

I won't get into Xtandi side effects right now.....

trailguy said...
... I know that some of us here, like some of my doctors, do not like the term " leuprolide chemotherapy", preferring to call it "hormone therapy" or "androgen denial therapy". I address this with: leuprolide acetate is not a hormone, it is not naturally produced by the human body, it is a lab-made chemical that acts on the hypothalamus gland to do what I described above. When I Googled "Lupron" I got a series of questions & answers. One such was "Is Lupron a form of chemotherapy?" The answer was "Lupron is a drug given to some cancer patients. Since it damages both cancerous and normal cells it is considered a form of chemotherapy."

I've always enjoyed reading your research on Leuprolide, as I'm in a similar situation to yours. My one and only testicle never recovered from ADT. And I use the term ADT among fellow PCa patients. Most know what it means, though some will Google it and find only security alarms.

HT works well when describing Max-RP, as in RP/HT/RT. Use the acronym HT around ordinary folks and they assume you're referring to TRT, and women sometimes instinctively refer to it as HRT. There's just no getting away from it. When I started Lupron and mentioned that I was losing my body hair, my wife's mother asked "shouldn't just the opposite happen?" Yeah, right... I'm going to take something just to give me more body hair.

People have no clue. Even my GP, when I mention the SE's of being on Lupron, acts as though I'm taking B12 supplements or something. I keep bringing up concerns about my bones, and when he shows me the chart from my DEXA he only talks about where a woman would fall on the chart.

Regardless of what Google says about Lupron being chemotherapy, most people think only of cytotoxic chemo (toxic to cells). I don't want to appear to be playing the "cancer card" when I have to fan myself in front of others. Besides, since my wife and both sons have been thru "actual" chemo, I don't want to be called out on it, or to seem to minimize what they went thru (even though the after effects of my PCa have been longer lasting than what they must live with).

Gentlemen,

Thank you for the insight on living with ADT! I fear sooner or later I too will have to resort to ADT.

My thoughts towards ADT therapy are costs (retired on Medicare and BCBS as secondary) and long-term detrimental health effects on the body.

Can anyone elaborate on these issues?

Medicare primary, Priority Health secondary, BCBS drugs here. 6 month Eligard is $6000 + $100 for the injection, 30 days Xtandi is $11,000. Copay in Jan was $2500, then I hit "catastrophic" level coverage. After that, Xtandi copay was $2500/month, but I got a grant to cover that.

If I have to I will undergo more leuprolide to stay alive, but am hoping that last bit of radiation has eliminated the cancer. Am/will be enjoying the RT side effects for the next few years, hopefully without the added bounce of leuprolide SE's. Will also get more radiation to mets if they show and can be hit.

I got 72 Gy to the prostate bed and surround in 2013 after Dec 2012 RARP surgery and 3 months of Lupron chemo. Colon got cooked so I got years of SE's from that. When PSA hit 3, I got the Auxumin PET scan. Then - with the films as guidance - got the other 106 Gy to the internal pelvic lymph nodes with focal to the 3 lymph node mets. So far so good, will get more focal if needed. Some intestinal SE's, not as bad as before. Total 178 Gy so far.