Lupron and xtandi

[Rockslinger]

Just went for our checkup since. Feb lupron 6 month shot lowerd his psa from 400 to 9.6 good news there but now dr wants to add xyandi does anyone have any extra side effects from this drug along with the lupron already tired, emotional, etc

[tango65]

XTandi crosses the blood brain barrier and it can be associated with negative side effects, including seizures. This is a link about Xtandi side effects:

rxlist.com/xtandi-drug.htm

[Rockslinger in reply to tango65]

Yes the seizure is what most disturbing. Thanks

[Loves2golf in reply to Rockslinger]

My husband lost his ability to walk on this drug. His legs became so weak, he could hardly stand from a sitting position. Since he came off it, he has regained his strength and is back to his old self.

[ctarleton]

I've been on Xtandi for a few years, in addition to being on basic Lupron-type ADT for nearly 7 years. Anecdotally, I had more fatigue after adding Xtandi. Helped me decide to hire a service to do my heavier yard work as I entered my 70s. Got some slight "man boobs", but no big deal. Slowly lost even more body hair, including nose hairs. My skin got even dryer.

The reported Adverse Effects of 800 men on Xtandi during the original Clinical Trial leading up to Xtandi's US FDA approval are in this document.

accessdata.fda.gov/drugsatf...

[Hidden]

The doc must think the combo is better! Go for it . Anything to push the pc away. I took Lupron and another test adt drug tak-700 ( similar to zytiga ) for two years together. Side effects mucho . I did the orchiectomy and dropped the Lupron shots. I’m still on the tak-700 until failure . ? The test was stopped. It failed for most . I’m the only one here to have used it and to still be on it . 🌵

[RyderLake2]

Hello,

I have been on Xtandi (enzalutamide) for over three years. The side effects are manageable. I concur with Charles Tarleton about the man boobs and fatigue. I am now 75 and happy hour these days is a nap. I have no heart issues, and no stroke or blood pressure problems (touch wood). I do have some back pain and joint pain but, by and large, it is tolerable. I take no pain medication and the pain that I do have may be more a function of arthritis than PCa. Hope that helps!

[monte1111]

Xtandi 3 years also lupron and xgeva. There is some fatigue (take in evening or before bedtime). I think he's stage 3 now. Try to avoid stage 4. All the drugs we take for prostate cancer have side effects. I wouldn't focus on the negative. Clear your mind and go forward. Your doctor knows more than any of us about the situation. It would take an hour just to recite all the possible side effects of the drugs I take. I'm still walking and talking (and still typing, to the dismay of many). Please don't sling any rocks my way. Enjoy.

[Rockslinger in reply to monte1111]

The seizures is a big concern , and the memory the others not so much thanks .

[ppulatie in reply to Rockslinger]

Reported seizures were less than 1%. And mostly in men who were prone to seizures or had them before. I would say not to worry about them.

BTW, coming up on 11 months of Xtandi use. Big side affect was greater tiredness, but can live with that. Dropped PSA down from 6.0 to .4 currently. This was after both Casodex and Lupron losing effectiveness.

Still have many years to go per docs.

[Rockslinger in reply to monte1111]

I try not to sling any rocks your way like Ernest T Bass from Andy Griffin LOL

[ForJoel]

My husband couldn’t take Xtandi it made him feel so bad. He takes Zytiga with prednisone and has been doing very well for almost two years now ! PSA is .6

[Fiddler2004]

I've been on the Lupron / Xtandi combo for almost a year. Stage IV with mets to the bones. Side effects are sometimes difficult with heavy fatigue, hot flashes and low back pain the most prevalent for me. It's going to different for all of us. Xtandi has the option of various doses so if max dose is too much Doc can reduce. It's def worth a try! Best of luck!!!

[Survivor1965]

Ive been on Lupron/Xtandi for like 43 months. No seizures but definitely side effects. Still not sure if the side effects are from the lupron or the xtandi, or just both. Im learning to control the emotional part of this but now the weight gain is becoming a problem, even working out and walking.

[WildRose6]

My husband was on Xtandi for two months. It did not lower his PSA at all and the side effects were terrible: crushing, debilitating fatigue and severe brain fog. Every single day was a battle and he was losing his will to live. Since it didn't work to control the cancer his doc recommended a second course of Docetaxel, and husband stopped the Xtandi. Within 48 hours of stopping the Xtandi he was back to his old self.

I learned from another forum member that it is possible to reduce the dose if the side effects are severe. This option isn't widely known but it is in the full prescribing information: xtandihcp.com/support/resou...

As you know, it's important to advocate for our loved ones. Don't take your doctor's word that the side effects are "only the cancer" and not the drug.

Every person is different! Many men can tolerate Xtandi just fine, and I hope that this is the case for your husband and that it helps to keep his cancer under control. Blessings to you both 🙏

[NecessarilySo]

I've been on Lupron/Xtandi for 4 months, since June. I had a seizure in March due to a drug overdose (Metroporol, lisinoprol, simvastatin, plavix, I took twice same day) I suppose, not totally sure of the cause, I fainted, then was unconscious for a day or so, and have been taking Levitracetam twice daily also since then for seizures. Xtqani warns that it can cause seizures but I have not had one since. I forgot my Xtandi occasionally also. But nevertheless, my PSA dropped steaily to .3 over four months. And no side effects except forgetfulness seems to be my middle name now as I cannot keep up with my wife's honey-do list.

[j-o-h-n]

All meds have side

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/23/2020 6:09 PM DST

[SK1MC]

I received an Eligard shot in June of '19. In January '20, I received my second shot. I've been on the combination of Eligard and Xtandi since June. On Eligard, I experienced fatigue and hot flashes. With the combination of Eligard and Xtandi I have noticed an increase in both fatigue and hot flashes, which are also more intense and longer, and I feel like my memory is being affected. I'm 54.

[Ausi]

For me, Minor hot flushes for a month or 2 but nothing else

[afab]

On Lupron on for 6.5 years and Xtandi for 4.75 years. Had most of the classic side effects. No complaints since I’m still in durable remission, undetectable PSA..

[Rockslinger in reply to afab]

Thanks we need all the encouragement we can get.

[rogerandme]

At this point extending your quality of life is what you want...of course there will be side effects but if you can manage them then treatment is worth it. I am stage 4 metastasis lupron xtandi and radiation