My husband's experience with Xtandi

[WildRose6]

I wanted to share my husband's recent experience with Xtandi (go to my profile and see my first post if you want the whole back story).

At the first of this year his PSA started rising on Lupron + Casodex. In April he was put on Abiraterone + Prednisone, and after three months of continued rising PSA the doc switched him to Xtandi + Prednisone.

The abiraterone was not so good--lots of fatigue--but the Xtandi was TERRIBLE. Husband had zero energy: literally taking a nap would exhaust him. The fatigue was crushing, unrelenting. He also had terrible brain fog and couldn't write more then a sentence or two.

After two months of this with continued rising PSA we met with the oncologist who said that it another round of docetaxel was in order. Husband told the doc about the fatigue and asked if he could discontinue the Xtandi before starting chemo. The doc said the fatigue was probably due to the cancer but OK, stop the Xtandi & stay on Prednisone.

Well, within 48 hours of stopping Xtandi he is like a new person, or more accurately more like his old self. (He had some nausea coming off the drug but that passed pretty quickly.) What was incredible was how much energy he regained after stopping the Xtandi. He could take a nap and be refreshed, make dinner without having to plan every move, and catch up on his email correspondence without effort.

We all know this by now, but it's important to state the obvious: everyone is different! I have read about many men taking Xtandi with minimal side effects. In my husband's case, he would not have survived long continuing the drug: it was literally sapping his will to live. Fortunately he seems to be resistant to both Abiraterone and Xtandi so we don't even have to consider going back to them.

We will make sure that our oncologist hears about this. It's anecdotal but I think it's very important that the docs understand the range of how drugs affect patients.

Peace and blessings to all of you and your loved ones.

[noirhole]

I had to drop down to 2 pills then added a third and in about a couple of weeks I added the fourth. 4 pills starting out brought me to my knees. Good Luck

[Hidden]

Many people have bad fatigue with Xtandi.

Generally speaking, it's best to go with chemotherapy after one of the second-line anti-androgens stops working. You get better results most of the time. With chemotherapy, you just have 5 days out of 3 weeks that you don't feel good. That was my experience and many others here too.

Wishing the best for him and you.

[Shooter1]

Xtandi 160 mg made me a complete invalid. Couldn't feed myself or wipe my back side. Two hands to lift glass to drink and then it would run out the side if my mouth, No QOL and no fun. Cut to 3 pills and improved within 3 days. Cut several more times and settled on 80 mg (2 pills) and PSA now tests from 0.10 to 0.00 and everywhere in between. Permanent neuropathy in hands and feet, but cancer in remission..

[WildRose6 in reply to Shooter1]

I'm so glad that you were able to reduce your dose to a tolerable level. When my husband asked about reducing the dose, our MO said "The dose is the dose."

[Shooter1 in reply to WildRose6]

The 160 mg dose is the max dose the average patient can take. You have to take control of your treatments and be your own advocate for what works for you. I told my MO what I had done and he wanted me to increase dosage again. I told him I wouldn't/couldn't. Since my PSA and QOL were both improving with lower dose, he accepted. I Showed him in the prescription info pages that with my side effects, I should cut my dose. You need the full info packet, not just the patient info portion.

[WildRose6 in reply to Shooter1]

Wow, thank you! I downloaded the full prescribing info and it indeed does allow for reduced dosage.

Right now he's not taking it because it wasn't doing anything to lower his PSA, but there may be some evidence for re-challenge later on.

We REALLY need that AR-V7 test to know whether or not these second-line drugs are even worthwhile. I can't believe our doc isn't recommending this.

[Shooter1 in reply to WildRose6]

Best of luck. Stay around and this forum has a lot of useful info from the members. Sometimes Drs can't keep up with all the new stuff available or are stuck in the rut of what they have always done.

[WildRose6 in reply to Shooter1]

Our newest MO is young, 29 I think. He's a good guy and doesn't get his back up when I ask about something. I think he is open to learning more about individual experiences--that's what makes a good doc, IMHO: learning about patients as humans, not just subjects.

[Shooter1 in reply to WildRose6]

Sounds like you found the guy you need, Best of luck in this journey. Keep us posted.

[Midi733 in reply to Shooter1]

My husband had a horrible experience with Xtandi. He started the 160mg dose and it was debilitating. He never really recovered from it. After 2 weeks he was unable to walk 50 ft. It caused congestive heart failure in him. He had COPD as well. It was too much for his body. 😓

We were hoping for a little time since he had advanced agressive cancer but it was not to be. Be careful and let your Dr know right away if you have side effects from this treatment.

[Tall_Allen]

Xtandi and Erleada activate the GABAA receptor, which creates the fatigue. Nubeqa (darolutamide) doesn't do that and may be more tolerable. Nubeqa is only FDA-approved for non-metastatic castration-resistant PC so far. But sometimes insurance will allow an exception if there is a good reason. I think his oncologist can make a good case for it.

[WildRose6 in reply to Tall_Allen]

Thanks for that info on GABAA, I did some research and found out some interesting things about the relationship between GABA receptors, alcohol, benzos, etc. My husband is a recovering alcoholic and when he stopped Xtandi he told me he hadn't felt this bad since he was in the later stages of alcoholism, right before he got sober. It made me wonder about the relationships between individual brain chemistry and these drugs' effects on neurotransmitters.

It's tragic that no one seems to be studying the individual responses to these powerful drugs and trying to identify factors that may affect the individuals' tolerance to them.

[Loves2golf]

Our experience was similar to yours. He became so weak, he could hardly stand from a sitting position without help. He lost all strength in his legs. We even began to discuss buying a wheelchair. He couldn’t take it any longer, and cut his pills in half. There was a slight improvement, but his PSA was doubling almost every two weeks. Finally, the Doctor said to stop it and start chemo. In the couple of weeks that he stopped Xtandi before chemo, his strength came back and he could walk on his own into the hospital. When we told the Doctor about our experience, he dismissed it as being the cancer, and not the drug.

[Shooter1 in reply to Loves2golf]

Drs can be so blind sometimes. We live with it, not them.

[spouse21 in reply to Shooter1]

It seems dismissive for the doctor to automatically say the cancer, not the Xtandi, was causing the fatigue. Fatigue is a huge side effect of many on HU who've taken Xtandi. Wishing you and your husband a better outcome with the chemo. Don't forget to write!

[WildRose6 in reply to Loves2golf]

So sorry that you had this experience with Xtandi. It is beyond frustrating when doctors simply won't listen to their patients' experiences--they will never understand how to treat their patients as individuals if they don't.

When we first started this journey together, my husband and I agreed that quality of life would always trump quantity. Every day is a gift!

Blessings and peace to you and your husband.

[Loves2golf in reply to WildRose6]

Thank you, WildRose. Wishing you the best on this terrible journey. Just praying we can buy some time until, hopefully, something promising will arrive.

[j-o-h-n]

Xtandi, the candy that may be handy but not dandy so stick with the brandy.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/12/2020 6:59 PM DST

[Hidden in reply to j-o-h-n]

I'll drink to that.

[monte1111 in reply to j-o-h-n]

I wash my Xtandi down with brandy. You may have a career in commercials. I need to run out and get some brandy.

[Seebs9 in reply to j-o-h-n]

I think you should have been a rapper, [insert gang sign here].

[j-o-h-n in reply to Seebs9]

I'm a retired one..... Ever hear of the Rapper "50Cent"?.... Well my ID was "DollarBill" I was twice as good..... (YO YO)

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/12/2020 12:30 PM DST

[Seebs9 in reply to j-o-h-n]

Thats Fiddycent.

[j-o-h-n in reply to Seebs9]

If you continue to disrespect me I will have to call the "Pole-ice".....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/12/2020 12:44 PM DST

[EdBar]

I’ve been on Xtandi for over 5 years now, I had to drop back to 2 pills after a couple of years (Per my MO), side effects seemed cumulative and became intolerable. SE’s are a bit better now but fatigue can still be brutal and relentless some days, I just keep on grinding. Cognitive issues are pretty substantial too, but my PSA remains undetectable so I just carry on.

Ed

[Psa73]

I have been off Xtandi for about five week's now that it had quite responding as a treatment, and I hadn't realized how much it had knocked me down. But I guess it is better than the alternative.

[WildRose6 in reply to Psa73]

For my husband the fatigue and brain fog were debilitating. He was soldiering on but we both knew it was sapping his will to live. Best of luck to you.

[NecessarilySo]

I've been on Xtandi for three months now and my PSA has dropped from 35 to 0.3. I have no noticeable side effects...yet.

[WildRose6 in reply to NecessarilySo]

My husband had immediate negative reactions to Xtandi. I am so glad to hear that it is working for you with no side effects.

[monte1111]

Wow. Sorry you guys are going through all you've been through. Hope the chemo helps. I'm not sure, but doesn't Xofigo help with bone pain? If it's bone pain. Suppose that has some hideous side effects for some, though. Wishing you both the best.

[WildRose6 in reply to monte1111]

Xofigo can help with bone pain, but the risk is myelosuppression. Since chemo is his best hope right now we can't risk his bone marrow. The pain is still manageable with opiods, thank goodness. Wishing you the best as well.

[bellyhappy58]

Just started with Xtandi since July....PSA dropped by two-third to 0.73. My major side effect is fatigue. I keep trying to make sure and not to let it overwhelmed me by my daily walk of 6 to 7 km...and twice a week 30 mins of weight bearing exercises. So far managing it ok...Thanks be to God.

[Hidden]

I just watched the PCRI 2020 Patient Conference video and in it they mention a fellow who was on Xtandi and had a real tough time of it until he stopped taking it. Switched to Erleada and bingo it was a completely different story. So I would try that if you can. Drop enzalutamide (Xtandi) and go with apalutamide (Erleada).

[Olivia007]

I’m glad to hear your husband has his energy back. My father was taking Xtandi and he was almost ready to die. He was weak, lifeless forgetful tired sleeping and the main thing that scared me was he couldn’t walk as much or get into the chair to sit down or to get out was even more difficult and painful. The doctor that prescribed xtandi thought it was his heart we went to cardiologist but all check out great. I called the makers of Xtandi and talked to a nurse that found evidence in clinical trials with the same issues and symptoms my father was exhibiting the makers of xtandi nurse told me to stop the meds and talk to his doctor again his doctor didn’t seem convinced I begged the nurse of Xtandi makers to call and speak to our oncologist but she couldn’t I told her most doctors blow u off anyway we took him off the xtandi and he has a new lease on his life he has energy he isn’t forgetting anything and he’s happy and not sleeping all day. Most importantly he can walk and get up and down out of his chair with no help. All after 4 weeks of stopping Xtandi?

I know not everyone has the same side effects but my dad had the worse I can relate to you.

Thank u

Olivia

[WildRose6 in reply to Olivia007]

So sorry to hear your father had such a rough time with Xtandi. Shooter1 above mentioned that the prescribing info allows for reducing the dose if there are intolerable side effects.

We didn't try this with my husband because he's going to have chemo, but I am going to make sure our oncologist knows that a reduced dose is allowed.

It's awful that we have to fight with the doctors over use of these powerful medications. Good for you for not taking no for an answer! Blessings to you both 🙏

From the Xtandi full prescribing sheet:

"2.2 Dose Modifications

If a patient experiences a ≥ Grade 3 toxicity or an intolerable side effect, withhold dosing for one week or until symptoms improve to ≤ Grade 2, then resume at the same or a reduced dose (120 mg or 80 mg), if warranted [see Warnings and Precautions (5.1), (5.2)]."

[Olivia007 in reply to WildRose6]

Thank u,

[Loves2golf in reply to Olivia007]

Olivia, my husband had the same reaction, and now that he’s off it, right now he is outside doing yard work! The Doctor said there was no connection between the drug and his inability to walk!

[Olivia007 in reply to Loves2golf]

Yours too it’s so upsetting when they undermine what our loved ones are physically and mentally going through I wonder is it a kickback of the all mighty dollar they get from pushing it on some people that can not tolerate becoming unable to walk was the scariest symptom but yet they blew it off now my dad is cutting his own grass and doing fall clean up.

Blessings and thanks for reaching out!😊

[Olivia007 in reply to Loves2golf]

My dad is off of it too