Starting on Xtandi

[deano58]

Hi guys,

I've started on Xtandi, 4x40mg daily.

Just wondering about SE's I might expect,and I'm curious about how long it has worked for anyone.

Thanks,

Deano from Australia

[Hidden]

Hey Deano, I was on Xtandi for 3 years. It quit working for me a couple of months ago. The biggest SE for me was fatique which I could handle.

[deano58 in reply to Hidden]

Thank you rudyc

[RyderLake2]

Hello, I have been on Xtandi (enzalutamide) for four years. PSA still very low. Side effects? You bet. The major ones are fatigue, loss of libido, some brain fog (but this might also be old age), loss of body hair (but not the hair on my head) and loss of physical strength. All drugs have side effects and everyone experiences different side effects to drugs. For me, the side effects to Xtandi are manageable and far better than the alternative. So far, touch wood, Xtandi and Zoladex are keeping my PCa and testosterone in check. One recommendation, take the pills at night to reduce the fatigue factor.

[HopingForTheBest1 in reply to RyderLake2]

Sounds like very similar SEs to ADT drugs (Lupron, Eligard). Probably due to low testosterone overall.

[deano58 in reply to RyderLake2]

Thank you RyderLake2

[Shooter1]

Worked for 3 1/2 years after cutting dosage to 80 mg /day. 160 mg made me a complete invalid after 3 mo. Now new mets, PSADT as fast as 12 days, starting radiation treatments Monday, wishing us both good luck....Worth taking as it can keep cancer in check and give you a life....Life is Good.

[deano58 in reply to Shooter1]

Thank you Shooter1

[topofthemountain]

It stopped working for after 12 months. Main side effects were fatigue, loss of strength and short term memory loss. I moved on to LU177 and I have had a great result. But I know it will fail me at some point and I will move on to another treatment. All you can do is enjoy every day and remain positive that a cure maybe just around the corner.

[HopingForTheBest1 in reply to topofthemountain]

Where have you been getting your LU177 treatments, how many have you had so far, and side effects? I have read on this site a number of mixed results for this. Glad to hear it is effective for you.

[topofthemountain in reply to HopingForTheBest1]

I am getting my LU177 in Brisbane Australia at iMed located at the Wesley Hospital Brisbane. I have had two treatments with my PSA reducing from 50 to 3.5 after the first treatment in February 2021 and from 3.5 to .56 after the second in April 2021. My medical oncologist is monitoring my PSA on a quarterly basis and my nuclear oncologist advised that I will undergo further LU177 when my PSA increases in double time. I am not sure how they calculate double time but I suppose they will tell me.For the first 3 to 4 days after my first treatment I lost my appetite except for spicy foods. But I had no side effects after the second treatment. I am hoping that I can extend this treatment as long as possible but I know that the LU177 will fail at some time and I will need to find another treatment like chemo which I have not tried to date.

[deano58 in reply to topofthemountain]

Thank you topofthemountain

[London441]

What kind of exercise do you do and how much? Are you on Lupron or any other ADT drugs? If so, for how long?

[larry_dammit]

Well. I have had some if not all of the side effects, I take them in the evening so I sleep through most of them. Started Xtandi Dec of 16. Still on them

[deano58 in reply to larry_dammit]

Thank you larry_dammit

[EdBar]

I’ve been taking Xtandi for about 7 years now, main side effects are fatigue, and cognitive issues. I also have had headaches and blood pressure issues which are managed with other meds. The side effects are significant but tolerable and manageable and it kept my PSA at undetectable levels for about 6 years. Only recently has it started to tick up. I was able to reduce to a half dose a couple of years ago when side effects got to be intolerable, it seemed for me that long term usage caused side effects to be cumulative.

Ed

[monte1111 in reply to EdBar]

7 years is impressive! I will be 4 years next month. Psa 0.1 for quite a while now.

[deano58 in reply to EdBar]

Thank you EdBar

[Atlpapa]

I was on Xtandi for 13 months and had to stop due to neuropathy in feet and hands. Started as mild numbness in toes, no big deal, but after one year in it got really bad and started in my hands. Been off it for 4 months and numbness has decreased dramatically but not gone. I will start Erleada next month. Other SE was hot flushes.

[monte1111 in reply to Atlpapa]

I remember your post from a while back. I blamed my foot neuropathy on chemo. But it did start right after chemo and I had started Xtandi. I didn't connect the dots.

[deano58 in reply to Atlpapa]

Thank you Atlpapa

[Yank66]

Fatigue, brain fog and neuropathy were the major side effects that just added to those from Lupron. Moving onto Lynparza next week because Xtandi stopped it's effectiveness. Hope

[Fastingguy]

Four years for me, with Lupron. The usual other effects mentioned by others. Recently began low dose Gabapentin for nueropathy and it has brought foot pain down to more tolerable levels. Also had skin splotches when I began using a cortosteroid inhaler daily for my lung disease. I stopped using the inhalant and the splotches cleared in about two weeks time. PSA Fluctuates between 2.4 and 7. Untreated high was in low 50s. Scans show no progression of lymph mets. Grateful for the meds. I also do intermittent fasting which I anecdotally find helpful through the workings of autophagy.

[catsup]

I am still on extandi 3 1/2 years. Like the rest of the guys below fatigue, loss of appetite, loss of taste, loss of strength. Small price to pay for keeping alive. Still enjoy golf and my grandkids. What more can one ask for?. Hope extandi works for you .