HealingWell
Search Close Search
☰

Lupron questions

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/31/2018 2:13 PM (GMT 0)
Just had my psa test done....it was .193 has been rising since IMRT finishing June 2017... The doctor said he might have a Pet Scan done on me, and maybe start me on Lupron....
What are the common side effects of Lupron.....
OCT 2018 .175
NOV 2018 .152
NOW .193
some say I should start Lupron when I get to .2 and others say wait.... so confusing
Posted 12/31/2018 2:33 PM (GMT 0)
Hi Steve. I was on Lupron for 18 months. There is a list of side effects caused by Lupron. I had quite a few affect me. Weight gain, hot flashes, fatigue, muscle and joint pain, sleeplessness, increased A1c (read somewhere lupron causes a rise), loss of some body hair, memory problems, edema, chills and impotence. Some guys have little to no side effects and others get a boat load.
Oh yeah.....one other side effect. It puts the brakes on Pca. That one I don't mind.
Best of luck
Posted 12/31/2018 3:20 PM (GMT 0)
Steve, I've been on Lupron about two years now and hoping it will wear off soon. Seems to be a very slow recovery, for me anyway. I never had any weight gain but did lose muscle mass and added some body flab. Plus lost most body hair, which makes me look a bit like the Pillsbury Doughboy (I used to be quite slender).

Hot flashes started about a month after the first injection. Lots of mood swings... depression and anger. Venlafaxine, an antidepressant has helped with both moodiness and hot flashes, and I remain on it to this day. Night sweats are still a problem and I have a remote control fan at my bedside and sofa, which gets lots of use. Also a tremendous amount of apathy which some may call fatigue, but just don't feel like doing ANYTHING. Total loss of interest in anything sexual. Frequent nighttime urination.

Those seem to be the typical SE's and affects different guys to varying degrees. BP and blood sugar were slightly elevated for a while but never went up any further, and now seems to be back to normal. Best news is that my PSA's have been zero, but bad news is I won't know what my actual PSA is doing until after the Lupron wears off... probably about a year from now.

Good luck to you Steve!
Posted 12/31/2018 3:24 PM (GMT 0)
I’ve been on Lupron since 11/7. No side effects the first few weeks and then only minor hot sweats and loss of sexual interest. Added Zytiga 12/19 and definitely feeling the same effects, but more pronounced. Good news is that persistent PSA down from 4.5 to 0.37 in 4 weeks. Good Luck
Posted 12/31/2018 3:45 PM (GMT 0)
Google "Lupron" and read the side effects list for starters, then Google "pituitary gland" and read what it does.

When luprolide hits your hypothalamus, it will shut off your pituitary gland. That can make for a lot of profound changes beyond no gonadotrophin. (the goal, as that stops the testes production of testosterone)
Posted 12/31/2018 4:16 PM (GMT 0)
Steve, sorry your psa is on the rise after SRT.
First, a question - what doc wants you to start Lupron? Is it a Medical Oncologist, Radiation Oncologist, Urologist? If its not an MO, i would see one before doing anything. I could be wrong, but its my understanding that most practitioners, in a setting of BCR after SRT, would wait until your PSA is considerably higher before starting ADT. But i could be wrong if so someone will correct me.

As for your question, I've only been on it for 4 months, 2 months to go. So far for me, the most bothersome SE has been hot flashes, followed by sweating, followed by cold feeling, the whole thing lasts 2 minutes at most and it comes and goes. But more annoying, than anything, not a big deal.

I've lost some body hair, again, no big deal. And less interest in sex, which in reality, isnt such a bad thing after being married for 41 years, at least i dont have to beg any more LOL, almost a relief.

I havent experienced any fatigue, heightened emotions, etc, but then again, as i said i've only been on it for 4 months
Posted 12/31/2018 4:26 PM (GMT 0)
I did see a Medical Oncologist. He didn't say I should start Lupron, but he will want to do a Pet scan, and go from there. I just was wondering when is the average PSA the lupron is suggested to start after all that I have had....
Posted 12/31/2018 4:34 PM (GMT 0)
First shot of Lupron was Sept. 10th and the second 3 month shot was Dec. 15th. Only 3
1/2 months so far of the planned 6 months. Standard SE, hot flashes only at night probably because I try to cross country and alpine ski every day in a pretty cold environment, haven't gained weight but have lost muscle and of course added some fat around the belly. Libido has dropped to a level where my wife commented that this is the first time in almost 40 years where she hasn't been pestered every day. All of these SE are quite manageable except for the fact that I have decreased the ability to use the big power leg muscles for cross country skiing climbing hills especially skating and I seem to be a bit more winded than a few months ago. Have decided to pospone the trip to Norway for the Worlds Masters XC sking and the 55km Birkibiener for another year. Still planning our regular 2 month bike and hike trip to Utah and Arizona April 1st. and a European bike tour in the summer. Hopefully, the Lupron will have worn off by then.

Dave
Posted 12/31/2018 4:55 PM (GMT 0)
I'm no expert by any means but why they haven't started you on Lupron or something like it surprises me what's the difference between .193 and 2? As one of the guys said Lupron usually stops pca and that would be one thing I would have to think you would want. As far as affects of Lupron go on the ART and SRT thread there are 5 pages and you can see many many expamples of side effects that guys have encountered.

Larry
Posted 12/31/2018 5:43 PM (GMT 0)

steve0 said...
I just was wondering when is the average PSA the lupron is suggested to start after all that I have had....


Steve, it probably isn't a PSA level or timeframe, but more about just where your PSA is going. Mine was very low (around .03) but was still climbing after prostatectomy. Plus I had adverse pathology which pretty much dictates adjuvant therapy.

Yours keeps going up. In fact, as Skypilot had pointed out, you are very close to recurrence (BCR) which has been arbitrarily set as 0.2 - some MO's will use 0.1, which you have already passed.

I recently watched a 20 minute Youtube video that explained a lot of things that my RO never mentioned to me. It's worth watching, even if a lot of the information is common knowledge... https://www.youtube.com/watch?v=u4jpbt8zwio
Posted 12/31/2018 9:17 PM (GMT 0)
I've been on Lupron 13 months; started with Casodex, then a couple months later, Lupron. (see my sig below for more).

I've been lucky; I've maintained a full time job, though I can work from home 50% of the time, and have pushed myself to be in the gym 3-4 days/week for cardio and weights (which I was doing before all the PC fun). Diet is vegan, no alcohol and very little sugar. Juicing every day, etc etc. I DO get fatigued, and I've lost muscle after chemo and everything else. Still have body hair, but much less. But I'm functioning very well (I think--wife may disagree...). But I'm also on Zytiga now, with prednisone. I get xgeva and Lupron shots every 3 months now. PSA = 0.4 and dropping.

One of the challenges in the PC world is trying to figure out what works, what doesn't and what causes the SEs--when you're on 3-4 different STRONG drugs at once. I don't know, but I've been very blessed throughout this whole journey and don't feel like any of these treatments (except chemo) really pulled me down to where I couldn't function.

Keep the faith! Steve
✚ New Topic ✚ Reply