Lupron working without side effects?

[billfenley2]

Hi fellow members, and apologies to those whose reactions to Lupron are bad. I started taking it a few weeks ago, to prepare for radiation treatments in several weeks. So far I have no side effects, and I'm worried it may not be working. My doctor's office hasn't tested me for T and, even without the side effects, doesn't intend to do so until a few months after the radiation. Some say it undoubtedly works, with or without reaction. If anyone has any thoughts, thanks a lot.

[Tall_Allen]

What do you mean that your doctor "doesn't intend to do so until a few months after the radiation"? You asked him and he refused? what reason did he give for refusing? If so, get your GP to order the test.

[billfenley2 in reply to Tall_Allen]

Thanks, Allen. I suggested the test to my physician's assistant, & her reply was,

"We don't routinely test for testosterone at this time unless there was a compelling reason to (for example if the patient had a history of hyper/hypogonadism, etc). We can definitely measure your testosterone with your first PSA draw after treatment." I 'spect that if I pressed the issue, they'd give me the test, but thanks for the GP suggestion.

[Tall_Allen in reply to billfenley2]

Talk to your doctor instead. The PA is just a gatekeeper trying to hold the status quo.

[AlanMeyer in reply to Tall_Allen]

Bill,

I agree with Tall_Allen that a test is desirable. The reason is that if your testosterone has not gone down to castrate level it's easy to switch you to a different drug like Firmagon, or to add another drug like Casodex, and get your T down to a therapeutic level.

During the first two or more weeks of Lupron there may be no symptoms because it takes a while before Lupron or similar agents effect a shut down of testosterone production in the testes. Some time after that occurs you should expect to begin to experience hot flushes and loss of libido (desire for sex.) The purpose of getting ADT at this stage is to weaken the cancer, making it more susceptible to radiation damage. If you're going to take the drugs in order to accomplish that, you might as well be sure that you're getting the full benefit.

I have seen the cost of T testing quoted at over $1,000, but here's a web page showing much lower costs, including one from Quest Labs, one of the biggest in the country, used by thousands of doctors' offices, at $68.

findlabtest.com/lab-test/ho...

Doctors don't, and probably shouldn't, do testing just for the hell of it. They want to know that the test has a purpose and treatment will change based on the outcome. In this case, treatment should indeed change. I'm not a doctor and can't speak authoritatively on it but I think that if your T came out higher than the target level you should be prescribed another drug and the radiation postponed a bit to be sure that the target level is achieved in time for it.

Alan

[billfenley2 in reply to AlanMeyer]

Thanks Alan, good stuff.

[ITCandy]

Side effects seem to vary greatly with each individual when on Lupron. I actually didn't have hot flashes or joint pain at all for the first two years on Lupron and only had very mild symptoms when Zytiga was added.

The most severe side effect was that the bald spot on the top of my head is completely covered with hair now, making me quite attractive. Something I have to live with but I will endure.

[billfenley2 in reply to ITCandy]

And I guess you figured the Lupron was working? In looking for evidence myself, I'll hope for the kind you got.

[ITCandy in reply to billfenley2]

I was tested 6 weeks after my first Lupron shot and my T was in the fifties and my psa dropped from 385 to 5.

That’s what gave me a good idea that it was working, otherwise I wouldn’t have known.

[billfenley2 in reply to ITCandy]

THAT's even better evidence, and just the sort of reply I was looking for -- thanks.

[Schwah in reply to ITCandy]

Very strange. I also feel good but have almost no hair under my arms, on my chest, or legs. Plenty on my head and have to clip nose hairs weekly as before lol. I had no idea this was a side affect of lupron or Zytega. Or is it ?

[ITCandy in reply to Schwah]

That describes me to a T. Without testosterone, DHT is minimized as well, which is mainly the reason for hair loss.

Here I go citing Mens Health magazine again:

menshealth.com/style/a19521...

Among many other supplements, I take DIM, which helps eliminate harmful estrogen as well.

[Tommyj2 in reply to ITCandy]

What is DIM?

[ctarleton in reply to Schwah]

I've been on Lupron for 5 1/2 years. My underarms are always "fashion ready for the summer". Ha. Ha.

When I added Xtandi, even my nose hair went away!

[Tommyj2 in reply to Schwah]

Was thinking about how you are keeping up with your workout schedule during covid gym closures.... did you invest in a home gym???

[Schwah in reply to Tommyj2]

I’m fortunate enough to be able to afford a private trainer who keeps his gym open for one person at a time. Otherwise I would’ve invested in weights to keep working out at home. I’m on a drug vacation right now so it’s a little bit easier on me. How about you?

Schwah

[Tommyj2 in reply to Schwah]

Thanks for the reply... I’m still evading ADT as my PSA doubling time still exceeds 6 months but covid has severely compromised my exercise routine..... I’ve tried to get into doing it at home but elastic bands just don’t do it for me. HOPING that the gyms open before I begin ADT... I can’t elude it forever. Glad you have been able to take a drug holiday.... your management of your physical condition during ADT is the one thing that gives me hope that I MIGHT be able to minimize the effects of the treatment if I keep up with exercise....though I expect that without a personal trainer or someone to push me my results will not be anywhere nearly as positive as your own.... I’d just like to avoid looking like a pear.

[Schwah in reply to Tommyj2]

Fear is a good motivator for me. I’d buy some small weights and hire a trainer for one or two sessions to help set up your program. Lots of things you can do at home. Do not let your mind make excuses for you. You’ll regret it. Exercise is proven to improve survival. It’s as important as your meds. Get off your duff and get to work my friend. If you can’t get a trainer to set you up, PM me and I’ll get my guy to help you at my expense on zoom or FaceTime. Comeonnnnnnnnn

Schwah

[Tommyj2 in reply to Schwah]

Very Kind offer.... If I find myself REALLY down on my luck I’ll take you up on it... Doubtless when the reality of ADT is upon me I’ll get my ass in gear if not before.....with luck my gym will open on a limited basis before ADT is a reality..... Meanwhile I’ll go back to my exercise bands at home until such time as I can pick up some Barbells....thanks for the inspiration

Bob

[MMMayhem]

I can relate. Started lupron 24 days ago and zytiga 2weeks ago. While I can't say I've had zero side effects they have been pretty minimal and had me wondering the same thing about whether it was working. However, they have me scheduled for a 30 day follow up with blood work on Mon. You're the patient. It doesn't mean squat that their practice is to wait to monitor the results. If you want to, tell them that and have them order the test.

And to the others that replied, how long should I expect to wait to see my bald spot fill in? Though with my luck that will be another side effect I won't get.

[leo2634]

Only side effects are hot flashes which are tolerable"and ED Which is so far managed.I feel better than I have in years. I'm 64 with a full head of hair and hardly any grey so I can't add to the hair growth conversation. First line of treatments are Zytiga,Prednisone,Eligard injection, and Xgeva for bone Mets.

[Tak-Druk]

The psa test over time will be the real indicator of whether it is 'working' to good effect. I'm sure it's working on your testosterone. I wouldn't worry about negative symptoms, just psa.

I've been on it almost 4 years. I began with Lupron + Docetaxel and watched my psa decline every month (from a high in the 20s) until it was undetectable at about 4 months. My side effects have been mild. I've thought partially it's because I'm younger, in my 40's; but also just'lucky'.

That's funny about hair... I have no more hair in my armpits and my leg hair is totally thinned out. I thought maybe it has to do with chemo. I shaved my head, but it's back again now. My pubes are also less, but still there

[JimVanHorn]

I was told that whenever you change the level of sex hormones you get hot flashes and cold spells. This is true for men and women. It is a natural phenomenon and I had to just deal with it and accept it. Some people have a worse time than others, but it is normal.

[j-o-h-n]

I haven't had any side effects that most guys complain about except that the only hair I have left is my eyebrows and on the palms of my hands (oops that was from long time ago). I also have tits that any 16 year old girl would be proud of.

Good Luck and Good Health.

j-o-h-n Thursday 07/26/2018 5:52 PM EDT

[Tommyj2 in reply to j-o-h-n]

But are YOU proud of them J-o-h-n?

: }

[j-o-h-n in reply to Tommyj2]

I must admit you're right....except when I'm lying down on my back, they block the TV......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/01/2019 6:25 PM DST

[treedown]

Unless I really think about them I revert to saying I have no side effects but I am at almost 9 months and some are there. None of them bother me and I can't decide if my man boobs are left overs from the 40+ pounds I lost after dx or if a side effect but I can see the TV fine so like the others not really worried about it. Definently not the biggies, hot flashes or fatigue yet, but who knows what the future holds.