Starting Xtandi

[Juliejet]

The oncologist has just added Xtandi, if we can get help paying for it, to my husband getting Lupron injections! His cancer had mestazied to his shoulder for which he had radiation. My husbands PSA is 0.70 right now. His cancer is aggressive Gleason 9 stage 4. He tolerates the Lupron okay with some side effects. I know we need to hit it hard but I am so concerned about the side effects. Oncologist said main one's were hot flashes, fatigue, memory issues and may increase blood pressure. My husband already has those side effects. Since he already has had a stroke year's ago and dealt with very high blood pressure I am so terrified drug will cause another one!

[LearnAll]

Your concern about side effects is a real concern. Zytiga is more risky in men with high blood pressure and high blood sugar as it tends to raise both.Xtandy can be used at a lower dose to see if it is affecting blood pressure or blood sugar..in general, it causes less of such issues compared to Zytiga, However Xtandi can cause seizures in some men. Safest Lutamide is Bicalutamide out of all lutamides. (Not a prescription. just info)

[Magnus1964]

Everyone is different, some patients can't take the side effects, others like myself have very mild side effects.

[Shooter1]

Full dose xtandi killed my cancer back. It also made me a complete invalid after about a year on it. Half dose is all I can stand but I've been on it for a couple of years now and have a life again. Quit lupon with an orchiectomy, no big deal since I had already had a non nerve sparing prostatectomy and am totally erectile dysfunctional.

[Tall_Allen]

There is an advanced hormonal drug called Nubeqa (darolutamide) that doesn't penetrate the blood-brain barrier so it may have lower stroke risk. It also may cause less fatigue. His oncologist will have to make a case for it and probably appeal to get insurance coverage for it, but a friend of mine was able to get it on appeal. Hot flashes and BP can be managed with drugs.

An alternate approach is docetaxel. The side effects are no worse in degree (although they differ in kind), and it is usually given as 6 infusions, 3 weeks apart, so he is finished with the drug after just 15 weeks.

[Mtnbiker in reply to Tall_Allen]

Unfortunately there is currently a manufacturing shortage of Nubeqa. I have enough pills to last until Tuesday. Hopefully my specialty pharmacy can come thru and find some. I have no issues taking Nubeqa. I feel great with no side effects. Hopefully your husband can switch to it.

[2dee]

In MY case the anticipated side effects of Xtandi added to Lupron did not really manifest themselves. Added fatigue, balance, mind fog, but only a minor prick. In exchange for dropping my PSA to a new nadir of .3 and maybe still falling after 6mo.We are all so different as this groups response to Xtandi clearly shows.

2Dee

[EdBar]

I’ve been on Xtandi for over five years now, I’ve been able to reduce the dose to 80 mg after two years which is half the SOC dose and it is still effective. The side effects are significant but tolerable given the effectiveness of the drug. I also suffer from HBP but have worked with my cardiologist to manage it. I use estradiol patches to help with hot flashes. My PSA remains undetectable. I’m also on Lupron and have been from day one of dx.I had chemo about five years ago as an early form of aggressive treatment and found the SE’s to be pretty rough, far worse than Xtandi and I have experienced some lasting effects. So I have to disagree with anyone posting that they are not so bad, unless they have experienced chemo themselves. Now that being said, early chemo is likely one of the reasons my PSA remains undetectable. I hit my Stage 4 cancer hard and early, threw the kitchen sink at it, now I’m just working on keeping it dormant.

Ed

[Turt713171 in reply to EdBar]

How well controlled is your b p ?

[EdBar in reply to Turt713171]

Pretty good, I monitor at home and cardiologist is pleased. Had to switch up/add to meds I was previously taking. You have to be careful with BP meds, some don’t play well with PCa and PCa drugs.I’m on an ARB drug and a calcium channel blocker. Avoid ACE inhibitors and beta blockers will add to fatigue.

Ed

[Thompsonk]

I am sorry, but not familiar with drug you mentioned. Your husband in advanced stage beyond what they tell me I am at.The only thing I can say, if one can avoid Lupron, do so, unless 1/2 dozen doctors say it is absolutely essential.

Wish you and husband all my besy

[NecessarilySo]

I'm not a doctor, just an mPC survivor.

I have so many questions. So does your insurance cover the Xtandid? It costs $1000 per month. His PSA has come down or up? From where? He has had mets since when? Did the radiation for shoulder kill the cancer there? I suggest you hold off, wait for scans as direction. More mets, more action. Higher PSA, more action. Don't overreact. One step at a time.

[33947]

I've been on Lupron for 4+ years and just added Xtandi 6 weeks ago. SE of the Lupron were manageable, some fatigue and hot flashes (gradually diminishing). Xtandi seems to increase the fatigue somewhat but no other SE so far. Too soon to evaluate Xtandi efficacy. Lupron alone kept my mets at bay for 4+ years but PSA increased recently.

[larry_dammit]

Just keep your cancer doctors and Er numbers close. I’ve been on xtandi now for 48 months started it after chemo. 🙏🙏🙏

[j-o-h-n]

Greetings Juliejet, We need more info....

Please tell us your bio. Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!

All info is voluntary, but it helps us help you and helps us too. If you do respond, copy and paste it in your home page for your use and for other members’ reference.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/27/2020 4:04 PM EST

[Captsquid2u]

I’m thinking of getting off of Lupron! I hate it! Can’t sleep! Anybody stop this shit? Any info on what happens? I’m on Zytiga and prednisone and xygeva and Vicodin and Xanax and scotch!