lupron

[nextphase]

Going to be starting lupron soon if i do not go for clinical immune therapy route . Just wondering from my pc brothers about the side effects of this. thank you

[Jimhoy]

What did they tell you?!

Jc

[nextphase in reply to Jimhoy]

I just hit the magic number of 2.3 to qualify for this clinical trial . I have not spoke with anyone yet about this study. I am 11 and half years post op. and psa is rising.

[Tall_Allen]

Which immune therapy clinical trial?

[nextphase in reply to Tall_Allen]

The therapy is pTVG-HP and nivolumab. It is suppose to kick your immune system in to high gear. I'll know more after i talk to the doctors at carbone cancer center in the next week or so. you can see these studys at U W CANCER MADISON WI. thanks!!

[Tall_Allen in reply to nextphase]

It's a DNA vaccine keyed for the gene for PAP.

clinicaltrials.gov/ct2/show...

It looks interesting.

[nextphase in reply to Tall_Allen]

Time will tell my friend. It's either that or lupron.

[cesces in reply to Tall_Allen]

What is the significance of prostatic acid phosphatase (PAP),

I have never heard of it before

[Tall_Allen in reply to cesces]

It was popular in the olden days before we had PSA. It is an enzyme characteristic of prostate cells.

[StayingOptimistic]

I am almost at same crossroads now. What were your results from the mri scans. What kind of immune therapy trial? Thanks

[nextphase in reply to StayingOptimistic]

I have to meet with the doctors to talk about this yet. I'll let you know when i find out more.

thanks

[Hidden]

Some lucky guys breeze by. How old are you? Others get knocked down pretty good. It’s castrating you chemically.. Your muscles and bones can be depleted. Exercise often if you don’t already . I did Lupron for 18 months . I had serious urological complications and went into k failure with pc tumors blocking my urethra before I was even diagnosed. Lupron helped put me in clear status . It might not last for ever but every day above ground is gravy for me .. Lupron sucks so do all treatments ..but Advanced Prostate Cancer sucks more. Lupron has been used for forty years . After that there are many others . Whatever you choose . Be well and good luck .. Scott

[nextphase in reply to Hidden]

I'm 68 years old not over weight try and work out 3 to 4 days a week. thanks for the info.

[Hidden in reply to nextphase]

Keep up your routine.. I was 53 and took no t hard . You might adjust Better than I did. I fought myself with negative emotions. The typical , I’m not worthy to be here . Just a waste of this earths precious resources.. The first two year s while I got stripped of t were the worst . I came out of that in my third year. I was on Lupron shots for over a year. Then I decided to chop the balls off . No more shots . It was a good decision for me . I know guys that would rather die than lose the family jewels.. Lupron castrates us chemically .. anyway. My jewels were shrunken and a bit painful. No more ...Do you know what your t level is now?? It might be very low already and the t stripping might not be so Bad . Just a theory . I believe that the more macho a guy the harder the fall.I was a head strong macho MF ... At 68 you may be mellow enough to transition better than a younger guy . Sorry you’re here. But you will do what’s best for you . Find and follow a competent MO.. Take care .. Scott .

[nextphase in reply to Hidden]

Thank you for those encouraging words brother I appreciate it.

[Hidden in reply to nextphase]

I’ve called it Loopy -Ron to fellow users. Did you see the one guy that was on it for 17 yrs. wow. Lupron is the mainstay of old drugs. Use it and if it fails there are others.. Build your strength now , once your on adt strength stamina and cognition falter and are hard to retain.. Please remember that whatever you do is to kill or push down APC ,which if left one it’s own will devour us in short order.. Still the basic treatments proven to do something are chemo RT and adt.. They all damage the host .. Live well keep active .This hormonal cancer we will carry to the end ....

[westof in reply to Hidden]

Hmm... In October, I had my fifth quarterly Lupron injection ( with another 9 to go, along with Zytiga and prednisone).

Scott, I guess that I'm one of the "breezers", too few SE's to mention.

Hmm... Still waiting for the other shoe to drop...

Best

[Hidden in reply to westof]

That is great news. I got taken down like a big pussy.. totally feminized..I had some complication that you didn’t. ie; tubes and foley for a year. That took alot out of me. I’m trying to scratch my way back to some strength but stamina is gone.. I’m ok with hiking and biking ..I’m going to the gym and I fell like the thin man ..Jane Fonda workout at least gives me a lift of endorphins. That’s all I’ve got . Take care 😂

[westof in reply to Hidden]

Damn, You are one tough hombre! (did you ever lose "the hat")?

Best

AJ

[Hidden in reply to westof]

It was $10 bucks at Costco six years ago . I wore it out . Kinda like a worn out pair of blue jeans. No bugs brother. I still have the hat . Like an old friends.cant toss it .

[westof in reply to Hidden]

LOL!

[2dee]

One important side effect is living longer with less pain.

Everything else is just really annoying. The side effects vary for each of us. They are all stated in the drug description.

For many advanced people it is not only SOC, Standard Of Care, but the main drug type to slow the insatiable monster down.

2Dee

[stangoldberg]

I was on Zolodex and then Lupron for 17 years on an intermittent schedule following my prostatectomy. I received injections once every three months until my PSA was undetectable.

When the PSA rose to above 0.6, I resumed injections. I've been tracking the rise and fall of my PSA against testosterone. For 17 years it's been a perfect correlation: low testosterone=low PSA. Rising testosterone=rising PSA. As long as the relationship exists my cancer is controlled.

Most of the side-effects of Lupron are well-documented (e.g., menopause symptoms) however, one side-effect just received added attention after a new research study: very-short term memory loss. It's one that is creating new problems for me.

There are many types of memory loss, "very-short term" memory loss is best exemplified by the following problem I'm now having: e.g., working in my office when deciding to get a cup of coffee and by the time I enter my kitchen forgetting why I am there. While this type of memory loss is a common occurrence as we age, the frequency has increased substantially to 20+ times a day.

That's not common and research attributes it to low testosterone. To compensate, my oncologist and I have decided to raise the threshold of injections to 1.0 PSA, possibly higher if the memory problems persist. The key here is we can continue to raise thresholds as long as the relationship exists between PSA and testosterone, knowing even a high PSA will be reduced (and the cancer controlled) when Lupron is administered.

I wrote several articles about prostate cancer and memory issues on my website [stangoldbergwriter.com]. I'm not sure about HealthUnlocked's rules for listing website addresses-sorry if I violated them]. Hope this helps.

I've always looked at "side-effects" on a balance scale: side effects on one side, life on the other. So far, life has won out over the side-effects. When it comes to prostate cancer (and other miseries of life), I never make decisions about what's best; always about what's the least worst one.

[nextphase in reply to stangoldberg]

Thanks for sharing.

[stangoldberg in reply to nextphase]

You are very welcome. Often we look at a physician's depiction of living with cancer and wonder why we don't fit. There is an old Arab saying, "If you want to know how well the medicine works, don't ask the physician, ask the patient.

[Hidden in reply to stangoldberg]

Truth

[Hidden in reply to stangoldberg]

What a winning attitude. 17 years on lupron.. Wow .. you give much hope to us newbies . Thank you .

[stangoldberg in reply to Hidden]

Thanks. What's been very important to me is keeping accurate records (correlation between testosterone and PSA). Track your PSA (is it going up or down? And how does the movement relate to what your oncologist or you are doing).

[Hidden in reply to stangoldberg]

My PSA has been .006 four years now..still taking adt pill form . No one knows what to do with me ? Stay the course ...

[stangoldberg in reply to Hidden]

Ask your oncologist about intermittent ADT with clearly defined points when to restart ADT and when to get off of it.

[jfoesq in reply to stangoldberg]

Wry well stayed, as were the other comments. But, just to add to what has been stated already: loss of sex drive, weight gain- especially in the belly, loss of some body hair( but not from one’s head), lethargy, little “tits), ....

Not of it is fun, but I am still around 7 +yes after dx to be with my family and watch my boys grow. I will take it in a second!

[Hidden in reply to jfoesq]

Wonderful smiles brother. Keep rolling along .

[stangoldberg in reply to Hidden]

I plan to even though on some morning I feel like a 1963 Edsel.

[stangoldberg in reply to jfoesq]

Living with cancer always involves balancing life against the quality of life. So far, seeing my granddaughter's faces beats any of the side-effects.

[Hidden in reply to stangoldberg]

17 years wow! 😂🥳🥳🥳

[j-o-h-n]

Big tits, big belly, hot flashes, mood swings, memory loss, crying at tv commercials, looking in ladies shoes stores, ladies handbags are more attractive than new cars, sex is a dirty word, Christmas ornaments are knock outs..... other than that everything is normal....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/14/2019 10:27 AM EST

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

Just another day in the life...😂😂

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

Yah, but think about all of the wonderful handbags you can accumulate!

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

I'm up to 17 and still counting... Coach, Victoria Secret, Vera Bradley, Michael Kors, Kate Spade, Dooney & Bourke, Prada.... working on Louis Vuitton (but very very expensive)....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/15/2019 2:09 PM EST

[tom67inMA in reply to j-o-h-n]

Wow, you know all the brand names. You really are into handbags!

[j-o-h-n in reply to tom67inMA]

and high heel shoes too.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/15/2019 5:35 PM EST

[tom67inMA in reply to j-o-h-n]

My things are scented candles and fancy soaps. That may have actually been the earliest warning sign of cancer, since the collection started well before diagnosis

[j-o-h-n in reply to tom67inMA]

Just Lovely..... soaps and candles.....oooooooooooo gorgeous gorgeous....

I started out with ankle bracelets... 92.5 and 14K (they look so great with my heels)...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/15/2019 6:00 PM EST

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

I want a picture ?

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

Look for me, I'm the centerfold in this month's Rue Morgue Horror Magazine...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/15/2019 9:24 PM EST

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

No way Jose! I don’t believe it .. I already know that your a stud.

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

You know what a stud is?.... it goes around and around and is "tired" in the snow....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/15/2019 10:43 PM EST

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

Goodnight Mrs. Calabash, wherever you are...........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/15/2019 10:49 PM EST

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

Studded tires will

Save you ass in winter conditions. Thanks for cheering the troops up brother. You’re a good man . Merry Christmas in NYC.🎄

[Crmp55]

Whew, just finished 6 years on this crap. Side effects many, worst fatigue and hot flashes. Beats the alternative,I’m stageIV still here. Keep up the fight and god bless my brother.

[Abigayle]

The injection nurse suggested doing the Lupron shot every month instead of every three months. It seems to have cut some of the side effects down.

[RonnyBaby]

I for one, had virtually every negative side effect you could imagine. ADT / Lupron drove me absolutely nuts - felt like I'd rather die than keep enduring it after 16 months, BUT ....

But, I believe it also helped set the table for my potential successful healing, I'm on an ADT vacation (hoping it is permanent) watching my numbers. My PSA is rising (as expected) and where it ends up forms the next part of the narrative.

IF you need ADT, then go for it. There are many men who breeze thru the side effects (or lack of them). A 'logical' choice is to take the best step forward in the treatment protocol(s).

We wish you well on your journey. Be optimistic - it can't hurt.

[stangoldberg in reply to RonnyBaby]

I've been on an intermittent schedule for 17 years (when PSA reaches undetectable, I stop. When it goes above .6 I start again. I'm fortunate that my PSA is still controllable with reduced testosterone. When my PSA won't come down with lower testosterone, I know it will be time to move on to a more invasive intervention.

[RonnyBaby in reply to stangoldberg]

Thanks for the feedback. I'm wondering about a threshold number myself, but I need to see where I land before deciding on any treatment.

The fact that you've been doing it for so long is encouraging. At least it proves that in the real world, ADT vacations are possible.

I will be checking out Estradiol patches (not sure if its an option in Canada) as a replacement for Lupron. It's the hot flashes that really made me MOST miserable. Not sure how it would affect me mentally ......

I've read that the patches might help solve my problem.

[stangoldberg in reply to RonnyBaby]

I don't know anything about the patches. I've used two maxims in my own treatment:

1. If it's not broken don't fix it.

2. Use anything that has shown through research to control prostate cancer

My "mixture" involves traditional and alternative medical approaches, exercise, nutritional and to the horror of my wife, daily eating at least a close of raw garlic.

[RonnyBaby in reply to stangoldberg]

Others have posted about 'the patch'. I will certainly mention that the next time I meet my MO.

[Hidden]

None of us like it....BUT , it helped me into a clear status . Even If it is only temporary? , it’s a gift of life that I wouldn’t have had without treatments. Keep rolling and enjoying what we can💪

.

[FCoffey]

Lupron is poison. It affects your brain - that is what it is supposed to do.

Zytiga without Lupron is infinitely better in my personal experience. If you have to be chemically castrated, do Zytiga and f**k the Lupron.

[kensawyerwayland]

6 yrs after prostatectomy (w/ follow-up radiation after 2 yrs), PC metastasized to lower skull and I started Lipton two yrs ago. No side effects, but after a year psa started up again leading to radiation. Psa went back down. Still no se, but psa starting to creep up again.

[Hidden in reply to kensawyerwayland]

That pesky PSA! No se is a blessing . Keep truckin..

[tallguy2]

I've been on Lupron/Eligard shots for the better part of the past 7 years. The main side effect I experience is hot flashes and heavy sweats. Most of these have been reduced if not eliminated by taking the generic anti-depressant venlafaxine. Others on this forum will share additional ideas about this side effect. Also, it's important to maintain your exercise regimen. The lack of testosterone means it's harder to keep the belly fat off.

Best wishes with that new trial!