XTANDI: Our Collective Experiences

Dave responded on Xtandi for 4-5 months, then PSA went back up and more mets.

He tolerated it well - maybe some slight additional fatigue, but the Lupron has him so wiped out it's hard to tell.

I added Xtandi to Lupron after 3 years on ADT, with growing "resistance" and a PSA of 95. In 7 months my PSA has gone back down from 95 to 1.9, so far. Hot flashes are comparable to long term Lupron alone. When working in any heat, I have to take more frequent breaks to cool down completely before restarting. Some light fatigue that comes and goes, and lower peak energy levels. I still mow my lawns and go for 1- 1.5 mile walks, but do it more slowly than I did before. Most symptoms seem like just a continuation of what is now a little over 3 1/2 years on ADT. Only new thing is some very slight breast growth since adding Xtandi, but it is not really obvious to anybody who is not looking for it, and it does not concern me. I take my Xtandi just before bedtime. Just turning age 69.
Charles

I have been on Xtandi for 6 months now after failing Lupron/Casodex, then Zytiga, each of which worked about 18 months or so. I sort of expected that since Xtandi is similar to Zytiga, that I would be like many men who don't see much of a response or one that lasts very long. That is why I was pleasantly surprised that my PSA yesterday was essentially the same as it was 3 months ago, 1.0 vs 0.9. For the most part, I feel very good, but not quite as good as with Zytiga but close-body aches a bit more in my back and hip, both metastasis sites.

I can understand why my doctor always hesitates to make any guesses about how things may go. For a guy like me, used to making lots of plans, even reasonable guesses would be helpful, but you just can't know. All you can do is live in the moment and enjoy it when things work out well.

Mine is a bit different. After several on/off ADT periods I had a psa begin to rise while off and onc tried enzalutamide alone, one pill /day. It worked for a year then onc went to one/day 5 days per week (5 pills per week) and psa began a rise so now on two per day with stable psa at 0.03. T=~700 for two+ years. Some tiredness. Reverse of usual prescribing. Mets found and RT in 2012 during off period which may have been approval factor for Rx.

i got a 3 year run on my xtandi clinical trial.psa got as low as 0.20,but has risen to 5,14 in the last few months.my doc says its now time to try provenge.he also wants me to stay on xtandi,but i lose my clinical trial of xtandi when we do the provenge.scans will be next month,and we will make a decision as to which route i should go.thoughts and suggestions welcome.

Post Edited (Mickey Childress) : 8/19/2018 8:33:21 AM (GMT-6)

All

Was on Xtandi from May 2019 until February 2020. Issues with Xtandi included additional fatigue and high blood pressure. When I came off xtandi, blood pressure came down like a rock.

Good luck

I am on Xtandi + Eligard at this time.

More fatigue and the remnants of radiation + surgery side effects are worse. Initially I got constipated for the first time in decades. Wife advised Mg supplement which has helped a lot. I have also gotten back those "sudden urge to urinate" episodes and more stress incontinence, sometimes unexpected. It is interfering with my sleep somewhat as well. Hot flashes aren't too bad but they are there and I have gained 6 pounds since last Nov. I hope to lose that as the weather warms and I am able to work outside more.

My daily exercise routine helps me deal with the emotionality that comes along with this chemo. The 'mild cognitive impairment' is a pain too.

I've never been on Lupron without also being on Xtandi, so no way to guage additional side-effects. Everything has been quite manageable. Just pulled another undetectable PSA yesterday.

We have a lot of members lately, talking with their doctors about starting XTANDI, or switching over from ZYTIGA to XTANDI.

Since XTANDI first received FDA approval in 2012, following successful clinical trials, we have members here who have shared their first-hand experiences and questions here.


It's IMPORTANT to note that XTANDI's use has now been EXPANDED in recent times by the FDA, which means it has shown increased efficacy as a frontline medication.

XTANDI is now being prescribed for the following conditions:

1. Metastatic Castrate-RESISTANT Prostate Cancer (mCRPC)

2. Metastatic Castrate-SENSITIVE Prostate Cancer (mCSPC)

3. NON-METASTATIC Castrate-RESISTANT Prostate Cancer (nmCRPC)


A typical daily dose of XTANDI is 160 mg (four 40 mg capsules) taken orally, once daily, with OR without food.

The most common side effects reported by our members here include hot flashes, hypertension, and fatigue.

While a generic version of XTANDI is not on the market currently, patients CAN ask their doctor about filing for patient COST SAVINGS programs, which can greatly reduce the cost for XTANDI.

It's great to see current medications, like XTANDI, now becoming FDA approved for additional situations.

It underscores the importance of continuing clinical trials for new and existing medications and treatments.

With my best,
CYCLONE - # Iowa State University

Fair wind - right there with you...age 75 and all the same meds. I start docetaxel this Wednesday. Having bone pain but still active...unsure about next week!!😬

I've been on Xtandi for over 4 months, replacing Zytiga which I'd been on for 19 months. Past six months of Zytiga PSA went from nadir of 0.4 to 2.7. In the past 4 months with Xtandi, PSA has gone to 7.2. We don't think Xtandi is working for me; I think we've given it enough time. We're looking at taking a free 2-month supply of Nubeqa, then will either hop on a plane to Sydney for LU-177 or begin Provenge, with Jevtana to follow early in 2021--which we wait for LU-177 PS approval next year.
As for SE's, I think Xtandi gave me slightly more fatigue and night flashes, and perhaps a bit more joint pain. Otherwise, pretty similar. Good luck.

It is a bummer, but I should share an update on Xtandi.

I got a bunch of the side effects over the 15 months total I was on it. Nasoesophopharangial inflammation (like a big nasty sore throat) another shingles outbreak, on my legs this time (despite having had both Zostavax and Shingrex vaccinations) that left scars, a series of gum infections, vivid nightmares and sleep disturbance, frequent bloody noses (usually while making breakfast at 4:30 AM) a persistent cough with phlegm, and pruritis on both forearms (patches of nasty itchy bleeding weeping sores that leave scars when they fade). A week or 2 after I finished my last round of radiation treatments in early March this year my calves began to hurt. It got worse and involved my ankles as well. I began to wrap my ankles before I went out for my daily 6.5 miles. On May 29 my wife, Labrador and I went out for our usual hike through the local bush in the river bottom valley. 2.5 miles out I was overcome with pain in my ankles, calves, knees, thighs, hips and lower back. We had to cut the hike short, I barely made it home. When I got home I found myself unable to walk without leaning on counters or tables or the walls. I could not climb the stairs.

The Xtandi website says if you find yourself unable to walk you should stop taking Xtandi immediately and notify your doctor so I quit taking it and told the doc. I was afraid that I had gotten the "collapse of lumbar vertebra and subsequent pinching of the spinal cord" side effect.

Over the last 2 months I have been able to recover enough to get in several 3 mile days and a couple of 4 mile days, but most days I cannot go more than a mile. Normally I do 45 miles a week so I cut back on my food intake. Despite that I have gained a couple of more pounds. I have an appointment with a podiatrist next week and a consult with my MO. Appointments with RO in Oct and the MO head of the cancer dept in Dec. I will not get the next shot of Eligard in Dec and will likely not go back on Xtandi at all. PSA 1 month after quitting Xtandi was less than .1 (test limit) My ORIOLE-style radiation treatments that ended this past March will hopefully have killed back my mets so I can go drug free starting in Dec.