Xtandi

[willshake]

Aside from fatigue what other side effects if any are people experiencing?

[ctarleton]

I added Xtandi to Lupron after about 3 years after starting Lupron. The trend of less energy, peak energy, and fatigue increased after starting Xtandi. Hot flashes went up slightly at first, then settled down again. Within the first year on added Xtandi, I developed a small amount of gynecomastia (breast enlargement), but it did not continue, and looks no worse than many men I've seen who are just a bit overweight at age 70. In loose, comfortable shirts, it's no problem at all. I've been on added Xtandi for about 1.5 years. It's been 4.5 years since original diagnosis with a PSA of 5,006. Lupron PSA nadir was 1.0. Added Xtandi PSA response went from 95.0 to second nadir of 1.2. Current PSA is relatively stable around 1.9. The amount of physical things I was able to do relatively easily at age 65, and the types of things I can do now at age 70 and on treatments, have changed significantly. Dealing with that does come with practical and emotional adjustments, above and beyond the similar adjustments that come with advancing age alone. Expectations of roles and self-image have changed. Some sadness and letting go of lost capabilities have taken time to process. On the other hand, I really don't miss doing the heavier yard work anymore, or getting up on ladders, on roofs, or up into trees to do seasonal work, either.

Charles

[tallguy2]

My father had a seizure on Xtandi, so he switched to Zytiga.

[paulofaus]

Aside from fatigue, I get some brain fog, where I have trouble concentrating or difficulty with complex tasks. I also have some sleep disturbance.

[Grumpyswife]

It’s difficult to separate the years of cancer treatment side effects and specifically ADT accumulated effects from Xtandi. ADT seemed to age my husband quickly.

The listed side effects of Xtandi put us on guard to blame Xtandi for muscle pains which was false. Then we thought the cognitive decline was Xtandi but learned it wasn’t. Insomnia and peeing all night is nothing new.

Now we just hope Xtandi keeps working and are happy to have it as an option. In other words, agree with everything you said.

[EdBar]

Brain fog, memory issues, difficulty concentrating, dull headache. Been on it for about 3 years now, along with Lupron and Avodart. PSA remains undetectable so while side effects are significant they are acceptable, you learn to adapt.

Ed

[willshake in reply to EdBar]

Glad to hear that. Hope it keeps on working for you.

[abmicro]

Xtandi is considered a chemotherapy pill and it is a good drug, one of the best There will be side effects.

You can consider surgery for breast enlargement, but probably have to pay for it. It is quick and safe, and use propofal for the anesthesia. I was lucky to get if from Kaiser 12 years ago for free because my urology doctor made a mistake referring me to Kaiser surgery at no cost based on the side effect of Lupron. They tried to bill me later saying it was plastic surgery which was not covered, but I said if I were informed ahead of time the $10,000 price, I would have NOT done the surgery. Kaiser did not bill me again after that. Doctor was also nice and sent a memo apologizing for his error.

Some doctors adjust the dose of Xtandi down from 5 pills daily to 2 or 3 to compensate for age, especially over age 70, and especially if you have been on it a long time. Consult with your doctor about dosages.

Xtandi will fail eventually, like any drug, but some doctors restart it after a Taxotere Chemo is finished. It is called the Xtandi re-challenge. I plan to do this. I am in Chemo now. My xtandi failed in January. I was only on it for about 5 months. Plan to try that left over bottle a month after I finish all my Chemo infusions.

Disclaimer: I am not a doctor. My comments are based on my experience and not to be considered medical advice.

[EdBar in reply to abmicro]

Yes, my medonc, Dr.Sartor, mentioned that Jevtana sometimes will reinvigorate Xtandi as well as Testosterone therapy.

[chascri]

I have been on Xtandi about a year now and in addition to the side effects mentioned for the past several months have experienced severe bloating, gas and stomach pain. I initially attributed this to Xtandi but in thinking about it I started fentanyl to control pain from spinal fractures about 13 months ago and have been taking MiraLax, probiotics, enzymes and stool softener to control constipation since about January 2017 when I started using Hydromorphone to control pain from my first spinal fractures. So, I think it is as, or more, likely the gas, bloating and stomach pain is a side effect of these medicines as the Xtandi. Trying to get an appointment with a GI specialists now to look into this.

[Stegosaurus37]

Tough to tell. Are the aches and pains due to residual side effects from chemo, side effects from Xtandi, cancer itself of that I'm 76? I have moderate discomfort in my left hip that the X-ray says is severe osteoarthritis - nothing to do with the cancer and ibuprofin works pretty well against it. Fatigue is probably residual side effects from chemo as it's improving with time. But who knows? We've just got too much running around inside us to say for sure,

[willshake in reply to Stegosaurus37]

Thanks. I'm also 76 and have had degenerative spinal stenosis for years but after a few months on Xtandi the pain seems to be getting worse with weakness in my legs. It may be the Xtandi which is working so far.

[Stegosaurus37 in reply to willshake]

I had bone met pain in my right scapular. Radiation cured that. If your pain is localized, you might give radiation a shot. Worked for me.

[willshake in reply to Stegosaurus37]

Thanks.

[Stelle]

I've been on after Xtandi for six months after the agony of Lupron and Casodex for three years. PSA now down to .23 and may go lower. I feel like I have my life back. Some loss of stamina and fatigue but exercise helps at lot and regardless the side effects are MUCH less for me than previously. Go for it.

[Shepard]

I have been on Xtandi since July 1st. The first week brought nausea, restless sleep, and a soaked pee pad. Changed the scheduling for my meds to take Xtandi at 5 to 6 pm before dinner and take last Calcium dose at 8pm. The majority of the time I am able to enter sleep within 20 minutes. Dreams are vivid which I think contribute to not waking to go to the bathroom. Lately, I still have some pretty interesting dreams and have been getting up "on time." Head is a little foggy in the early morning, but I am up and working by 7am. I have more energy to work on my ranch even though I have lost muscle tone due to years of Lupron. By comparison, I much prefer taking Xtandi over Bicalutamide. I have bone mets and am also receiving Xgeva monthly. PSA at start of this regimen was 166 and I hope to see a decline at week 13. In any case, I give thanks for any good day!

[Shooter1]

Xtandi--excess toxicity. 24/7 belly pain, moderate to sever. Numb hands, feet, knees, elbows, face, butt. Total weakness . Swollen on fire feet. Vision fogged and double triple images. Shed skin on whole body. Loss of balance. Manual dexterity loss. Joint pain. Needed both hands to get a drink of water and then it would trickle out of sides of mouth. Eyes like red holes always leaking. Nose leaking with bloody mucus,fully clotted closed by morning. QOL deteriorating to intolerable levels.

Changed to 120 mg. Marked improvement in 3 days. Balance better in 6 days. whole body better by day 12. Still have some ankle, foot, hand numbness. Strength returning. Back to work after 45 days. Xtandi overdose on 160 mg was killing me. PSA staying low with slight rise in last test. (up 0.016 rise) to 0.134. Been in 0.132 to 0.118 to 0.148 range for last 8 months. Bouncing around. If you have bad side effects, don't be afraid to cut dose to 80 or 120 mg. I'm 68 and getting on with life.

[willshake in reply to Shooter1]

Thanks for the helpful information. Those PSA readings are great. I've dropped to 1.5 and hope to get below 1. Taking 120 mg. No numbness but leg weakness and lower back pain definitely affect daily outdoor chores.

[Drgucancer in reply to Shooter1]

I agree with cutting dose of Xtandi (enzalutamide) as necessary as that benefits many patients by making it more tolerable. Also one could consider switching to apalutamide (Erleada) or soon Darolutamide all second generation antiandrogens (same family class) but one may tolerate one better than another.

[Grumpyswife]

My husband restarted Xtandi 5 weeks ago. Yesterday while shopping he had two dizzy spells and the second one in Costco brought him down onto the floor on his knees. A nice man helped me get him up and urgent care sent him to ER.

After all their evaluations and tests they suggested dropping Xtandi to half or 80 mg which he did last night.

He goes in next week for PSA check. First time anything like this has happened but something tells me I better get used to it.

[Shooter1 in reply to Grumpyswife]

Mine was flat on floor in Home Dept. Employee asked if I needed help. I told him 'yes, I can't get this board out, can you do it for me...' Them scooted across isle and climbed up lumber pile to get back on my feet. I think he was a bit concerned about an old man falling down and lying on his floor. Took board home and did repair on window trim. Only took 2 days for a 2 hour job. Xtandi was putting me down. Got worse for 4 1/2 mo. until I was a total invalid. Cut dosage and improved. (see my post above.)

[Karmj]

My dad was on this treatment and suffered from tiredness and lack of appetite, we were forcing him to eat but now has come off drugs and appetite and quality of life back but obviously not in any treatment to fight the cancer 😟