LUPRON 6 MONTHS SHOT - WISH I HAD NOT TAKEN IT

[FreeTuneUp]

LUPRON 6 MONTHS: My first 6 months shot was 3 weeks ago. Wish I had never taken it. I felt tremendous before taking the shot. Dx PC in 2004 (14 years ago) but just started radiation therapy 2 weeks ago. Gleason 7: 4+3. PSA been hight for years (120 to 75 range.) How long does it take before I stop having negative mind junk: depression PLUS lack of energy. I want to feel like a man again. Now, I'm even thinking of stopping the radiation therapy. I should have researched more, but the doctor(s) should have provided a little (if not, MORE) insight on how bad this Lupron med is.

[Jvaughan0]

Speaking as a 6 month injection luproner, (now on my third round), exercise makes all the difference. Nalakrats, who posts here, is great about suggesting useful supplements.

[FreeTuneUp in reply to Jvaughan0]

Thanks! How much time before bad side effects of 6 month Lupron shot wear off?

[Jvaughan0 in reply to FreeTuneUp]

My third injection is good through May. I dont expect the effects to ease until the summer. This is my new normal. Dont fight the side effects, find the determination to overcome them..mood, body strength, bone lose, sexual desire, etc. Your attitude can overcome all of these...

[FreeTuneUp in reply to Jvaughan0]

Thanks, Jvaughan0! It sounds like then that I can expect relief about TWO months AFTER the 6 months? Wow!

[TNCanuck]

I can only share what works for my husband. Exercise, exercise, exercise. Not hard, but consistently. Megase and Effexor help with the hot flashes and mood swings. Hang in there!

[FreeTuneUp in reply to TNCanuck]

TNCanuck, I appreciate your time to help.

[MCWill in reply to TNCanuck]

Low dose 37.5mg has really helped with my husband’s hot flashes.

[MCWill in reply to MCWill]

Sorry 37.5 mg Effexor.

[Hidden in reply to TNCanuck]

My husband too and work every day.

[Hidden]

Your symptoms are caused by the low testosterone and not by the lupron itself. Lupron may have its own problems, mainly cardiovascular complications and other drugs are probably better to produce the castration levels of testosterone needed in ADT. The symptons will improve with time but mainly when testosterone increases. Perhaps they can stop ADT after radiation and eventually testosterone will recover and your symptoms will improve.

Keep the fight.

Best

Raul

[FreeTuneUp in reply to Hidden]

Raul80, IF I quit radiation therapy early (like NOW) will testosterone start rising? Or, do I have to WAIT until Lupron med wears off?

[Hidden in reply to FreeTuneUp]

You have to wait until the lupron wear off, so you are committed to 6 months of castration , probably more since it does not recover immediately after the 6 months.

There are patients who never recover, I am one of them. A 3 months lupron "killed" my testis. It does not have to happen to you,. so I would not worry. It is something related to age and previous testicular functioning.

Perhaps you should consider to finish the radiotherapy treatment. Meanwhile try to get a Gallium 68 PSMA to see if you have metastatic prostate cancer, and they can re plan the radiotherapy accordingly to these results.

i would no stop the radiation therapy and I would request they add Casodex or zytiga given the high PSA you have and prepare to fight the symptoms for the next 6 months.

There are ongoing clinical trials for Gallium 68 Psma at UCLA and other centers.

Please search for prostate cancer and Gallium 68 PSMA at clinicaltrials.gov

In summary (what I would do) :

1- keep the radiotherapy treatment

2- Request a PET/CT scan or get into a clinical trials for Gallium 68 PSMA PET/CT

3- Request they add casodex or zytiga (depending of results of the PET or other studies, indicating that the cancer is metastastic).

4- Stop all therapy after the radiation and see what happens with the PSA.

Anything I can help, please let me know

Keep the fight, symptoms will improve , it is temporary.

Raul

[FreeTuneUp in reply to Hidden]

Raul, I started RT about TWO weeks after I took the Lupron shot. Had 14 days of Bicalutamide pills ... then one Lupron shot (6 month shot), then 14 more days of Bicalutamide pills. Then, started RT. I never had any problems with the Bicalutamide.

I wonder IF I should start taking the "B" (Casodex) again? I have 17 pills left.

[Hidden in reply to FreeTuneUp]

It is controversial, but I would take the bicalutamide because your PSA values. If you were sure that you have metastatic disease ( cancer in bones or lymph nodes or in viscera) you should ask to be treated also with zytiga (abiraterone) instead of bicalutamide.

[Hidden in reply to FreeTuneUp]

Not a doctor, and I haven't done radiation, but my belief is that radiation has no effect itself on testosterone level. The lupron shot (I had eligard) will shrink the prostate and 'tenderize' the tumor to make the radiation more effective. No reason to abandon radiation at this point, in my opinion. I don't know why you and your urologist allowed for minimal treatments while your PSA was cruising at alarming levels. Seems like you are getting a late start on this battle.

[John-carp]

Hi. Two years in on Lipton and I am taking a holiday. Exercise and diet minimize the side effects. Acupuncture helps me a lot. Don’t underestimate the power of positive mindset. This stuff is a drag but buys us time with people we love. I continue to work in a demanding position. Keep up the fight

[FreeTuneUp in reply to John-carp]

John-carp, What is a quick 1-2-3 diet tip?

[John-carp in reply to FreeTuneUp]

Hi

I minimize carbs and eat little to no sugar. I also minimize meat. Eat fruits and vegetables. Inherently you body will have more energy. And feel better. Good luck. Let me know if I can help.

[Tjc1]

Hi if this is your first time you can start feeling better in 6 months. After 2 years i tried stopping and i noticed some changes in that time. Unfortunatly my psa spiked to 4 so it was back on the shots. Been on them ever since.

Thomas

[FreeTuneUp in reply to Tjc1]

Thanks, Tjc1, for your info! Is this pretty normal for everyone ... or just your personal experience?

[Tjc1 in reply to FreeTuneUp]

The psa spike is my personal experience in sure. Many i have read can take longer brakes then 6 months.

[Jmhanshaw in reply to Tjc1]

I started 3weeks ago and have been getting 2treatments a week. At first it was effective for about 2 days then the hot flashes would start over. After my 5th treatment last Thursday I have not had a hot flash since (today is Sunday). I live north of San Francisco where everything is expensive. My treatments are $98 each but could be $85 if I signed a long term contract. I think there are probably good and bad practitioners and I lucked out and found a good one.

[Jmhanshaw]

I had bad hot flashes from Lupron, and have found almost complete relief by acupuncture. I would have never believed it, but amazingly, for me it has almost completely eliminated my hot flashes.

[FreeTuneUp in reply to Jmhanshaw]

How often do you go for acupuncture. How much does it cost? Thanks for your help!

[Haliday]

My husband has had 13 of the 3 month Lupron shots and TWO holidays of 6-7 mos. he walks. And walks. And walks. Hot flashes a couple of times a day. Dizziness is his major SE. He had a bad fall last week. New rule — when you feel dizzy, stay put and lie down in the floor of the room you are in. It is a rough row to hoe. Good luck.

[FreeTuneUp in reply to Haliday]

Thanks for the warning, Haliday!

[Jvmott]

Don’t stop treatment, Lupron is a strange drug but it stopped my cancers growth before I had radiation..try to remember that it’s the drug that is making you depressed and it will wear off .. my friends told me I acted like I was going through metapose.... mood swings , hot flashes...etc..

[FreeTuneUp in reply to Jvmott]

jvmott, I started RT about TWO weeks after I took the Lupron shot. Had 14 days of Bicalutamide pills ... then one Lupron shot (6 month shot), then 14 more days of Bicalutamide pills. Then, started RT. I never had any problems with the Bicalutamide. Wish I had just taken that!!! Thanks for your input. When do YOU think I will STOP having SE's if I do NOT take any more Lupron shots. (First one was February

[FreeTuneUp in reply to Jvmott]

First Lupron shot (6 months) was January 26th (figure start of February), 2018.

When do YOU think I will STOP having SE's if I do NOT take any more Lupron shots.

[FreeTuneUp in reply to Jvmott]

First Lupron shot (6 months) was January 26th (figure start of February), 2018.

When do YOU think I will STOP having SE's if I do NOT take any more Lupron shots.

[Tjc1 in reply to FreeTuneUp]

You will start to come around in 6 months or maybe less since you only had one.

[EricE]

I just had my second shot of Lupron. I can't believe how fast it swallowed my manhood. I was sort of prepared for the sexual side effects but I wouldn't have believed how quickly my muscles would waste. I agree, my doctors all glossed over the side effects in quick, smothered sentences that went past me as fast as they were uttered. But the simple fact is, that as bad as it is, the Lupron is keeping you alive. Never forget that. I am a firm believer that getting out into nature and exercising is the best approach. Make this your mantra: "I will not let this shit beat me, ever."

[FreeTuneUp in reply to EricE]

Thanks for input, EricE. I'm NOT worried about the staying alive part, cause I'm ready for Heaven. After the Lupron shot 3 weeks ago, I'm about ready to ask the Lord Jesus to take me Home ... it will sure be better than being here!!!

[erjlg3 in reply to FreeTuneUp]

[Bobrat]

I have been Zolodex and Lupron for 14 months now, I exercise daily the more the better! Meditation and anything upbeat, also I take calcium supplements! I have no sexual desire and am quite depressed and have had some weight gain ! I have one more injection in a month and that will be the final one ( three month) fortunately my PSA has dropped to .01 had my Brachytheapy therapy Aug. 2017, my PSA really dropped after that! My original Lab Stats before treatment were Gleason 3+4=7 PSA 20, I put off treatment for year and a half and this was a error in Judgement on my part! I have learned to live with HT but it has taken a lot changes on my part! I think over all it has made me a better Man! Cancer is a lonely experience and we must help each other and others! Doing volunteer work helps as well!

[FreeTuneUp in reply to Bobrat]

Thanks, Bobrat! I wish I had taken the 3 month shot instead of the 6 month. Good advice on the volunteer work. What dosage of Calcium supplements do you take?

[erjlg3 in reply to FreeTuneUp]

I think everyone should be started on a monthly injection to see their reaction to the drug. Elgie was in bed for almost 9 months after diagnosis and Eligard injection back in 2004. He never gets a 6 month injection of those shots anymore. So sorry you are going through this. Please don't give up.

Most sincere,

Jackie

[timotur in reply to erjlg3]

Yes, I started with monthly Lupron along with Zytiga, which I started several weeks before the Lupron... luckily little SE’s with the smaller dose other than muscle fatigue, but also staying very active.

[Hidden in reply to Bobrat]

Does this mean, when your PSA drops to extreme low, they stop it… I am confused. I am the wife, before all of this, I did not know what PSA was🤷‍♀️

[Hidden]

Welcome to the club! I’m not being a jack ass but this is just the start for you. APC will kill if unchecked. Think about hitting it hard.Think about living. Enjoy life. You will change, no more “T” .These are the choices if you want to live. No fun no cake walk but you can live.Thats if you beat it down while you can. This is tuff love.

[Jeff54]

You need to exercise that will get you back on track! I have been walking for over 4 years now! I have been on Eligard since 8-16-13 and I feel awesome every day! I walk 2 hours steady Saturday &Sunday! I get my shots every 4 months! I wish you good luck and God Bless!

[Emak1]

On firmagon for ADT. On it 10 weeks. Outside of typical ED. Only minor night sweats 1 or 2 times a night.

But I eat a strict Mediterranean diet and exercise 6 days a week (legs, upper, cardio, day off rotation ).

Seems to help a lot. Not really tired or have day sweats, etc

[Melaine50 in reply to Emak1]

I just started with a double injection of Firmagon in the stomach And my next shot is four weeks away. PSA is 490 .Wishing you the very best

[Thinus]

Please finish your radiation therapy. And if it is 30 radiations, be sure the last ten will start tapping into your reserves. But go through with it. It is a very good sign that your pc hasn't spread too far.

As for your ADT lupron injection side effects: stay busy. Be active. I am on three month Lucrin. Maybe a more bearable option. Two years now. And I have learned to bear the hot flushes and the anxiety attacks. Its not so bad.

Please start with a good second line treatment. Read up on it. And a good diet. I want to echo the words of another pc patient: nobody should die of prostate cancer without trying cayenne pepper. Drink it with tomato juice. Drink the capsules, it doesn't burn so much. 3000 mg a day. God bless.

[Gary94]

As you have experienced, the initial lupron shot is the worst. The hot flashes are the worst, the fatigue along with the radiation is a double whammy. For me megestrol pills eliminated the hot flashes. I think you need to do some serious soul searching. This is the new you. The new you will be different but you can still have an awesome life. If you give up your treatments I guarantee you won’t like the outcome. You don’t want to know what bone pain feels like. Believe me. With a gleeson of 7 you can’t afford to quit treatments.

[Hidden]

I had a thirty day shot of Lupron, I felt very very bad. Several days ago the ono tried a thirty day shot of Eligard... Ihave experienced hardly no symptoms at all. Anxious to see the PSA in a couple of weeks, it was 47. The PSA started doubling about six months ago; scan showed Ca met to left Iliac node.

HAS ANYONE HAD THEIR SED RATE CHECKED BEFOE OR DIRINT ADT???

[BigRich in reply to Hidden]

What does sed stand for?

Rich

[Hidden in reply to BigRich]

SED is short for sedimentation rate. Red blood is placed in a test tube for an hour. After that time the tech measures the blood in the bottom of vial and that is the SED rate. The SED rate indicates if you have an infection in your body. Google it...

[BigRich in reply to Hidden]

Thank you o the information.

Rich

[j-o-h-n]

A Tuneup is the answer.

Good Luck and Good Health.

j-o-h-n Sunday 02/18/2018 4:50 PM EST

[Gary64]

Your posts bring back bad memories of my experience on Lupron but I want to reiterate what so many folks have said here which it is necessary to keep you alive. I recall not only the typical side effects that people talk about but I lost my sense of logic and couldn't even do simple math in my head. That was particularly frustrating since I am supposed to be a financial expert. I recall thinking that I was glad that I wasn't suicidal because the treatment dragged me down so much. All I can say is stick with it and try not to let it get to you. The alternative isn't so pleasant. Best wishes and listen to folks on here. We're all in this together.

[Chazem]

Effexor ER 37.5 to 75 mg daily cut my hot flashes from every 45 minutes day and night, down to 4-5 times daily and also much less intense.

For those of you getting Chemo you may need to bump up to 150mg for the week when you get the chemo then back to your maintenance dose.

Try CBD oil for the insomnia or Ativan 1 mg for sleep.

Hang in there.

[chugger]

I am a few months behind, but...I agree wholeheartedly, exercise is the key to tolerating the side effects of Lupron!! No question. I did 6 months last year, have always exercised at the gym, I had nominal side effects, one minor hot flash a day for a few minutes. Toughest thing was sore, tired thighs but very tolerable compared to what I've read. I've just started up again 10 days ago and now taking Zytiga, so far not bad - the hot flashes last a little longer but they are not very intense. GOOD LUCK!!!!

[Jimhoy]

Free

Just noticed the age of your post!!! Don’t know why they show up like they’re recent..... but wrote it so I’ll hit send!!!

Hope all worked out for you!!!

Jc

Free

I’ve been reading about this for the past few months and I’m not going to sugar coat it!!! Like your / my doctors did!!! Doctors told me about mood swings, hot flashes and ED!! Turnes out to be the tip of the iceberg for me!

I read that most men have mild to moderate SE’s (listed above) to ADT.

Then there are the few lucky bastards like me!! ADT kicked my a$$, rolled me over and kicked me in the balls then took a shovel to my scull!!!

I was 62yo (going on 40) when Dx’ed April 17,2017 @ 3:28Pm Est. Now ending my ADT last week, I’m 64 (going on 84) now!!!

If you had a 6mo injection, you signed up for 6mo.......plus!!! Unless you take a nail file and dig it out!!!

I was on 18mo of Eligard @ 3mo dosages with the last one 3mo, 13days, 14hours & 10 min’s ago.

I’m told weaning can take from 3 to >6mo’s. Recovery of T could take 6 to >12mo’s, if it recovers at all!

You can dump all the sugar in the world on this but you’ve been castrated!! There’s no bandaid for that!!!!

Option 1) follow the protocol set forth and roll the dice regarding SE’s.

Option 2) see what happens to PSA after 6mo’s and act accordingly. If it behaves, monitor / act going forward!!!

Option 3) stop all treatments and ....... well ......die!!!

I say fight the fight!!!

Very common suggestions are;

*) A lot of men say excersise! Whether it works or not, it’s good for you!!

*) Watch the diet / weight because that explodes!

This, of course, depends on the extent of your SE’s.

RT was more of an inconvience getting out of work everyday. I had no issues with that!!

[erjlg3]

Good write jimhoy.

[Hidden]

They never tell you, make you think it will be fine.. I’m starting to hate them.