To Xtandi or not to Xtandi?

[arete1105]

My Onc wants to move me up to Xtandi. I am balking because of the side effects. I already have fatigue/energy problems and sleeping issues. Will I additionally have more side effects in these areas or is it only a probability?

[Tall_Allen]

It's the most frequent side effect. A new drug, Nubeqa, may be less fatiguing, but is only indicated so far for non-metastatic CRPC. If you only found bone metastases on a NaF PET but not on a bone scan, your oncologist may be able to make a case for it.

[cesces in reply to Tall_Allen]

That is an interesting strategy. Thanks

[sjc2 in reply to cesces]

That is exactly what my husband's MO did. His cancer doesn't show up yet on a bone scan or the CT's (only a LN on the Axumin he had in Aug. 2018), so she was able to give him Nubeqa. He started it on 7-20-21 and so far he has had ZERO side effects!! Just what his MO said most of her patient were experiencing and why she didn't want to give him Xtandi since she said it has more serious side effects that almost all her patients DO experience! I would try to get Nubeqa if you can, it's expensive, but if you are NOT on Medicare yet, they have a $0 copay program that pays up to $25,000 a year of the costs, we've been paying nothing! 😀

[Hidden]

You can often reduce the dose with Xtandi and have just as good results wih less side effects.

I agree with TA that Darolutamide (Nubeqa) is probably a better choice due the fact that the blood-brain barrier is not crossed as it is with Xtandi. I have read that some have gotten it prescribed because of the side effects of Xtandi.

[GP24]

You could use Zytiga instead of Xtandi, this will work against the cancer just as well.

[cesces in reply to GP24]

I seem to recollect that someone said there is some benefit to taking these two drugs in a certain order.

[GP24 in reply to cesces]

I understood from the profile that he did not take Zytiga yet. It seems that Zytiga before Xtandi will work a bit longer than Xtandi followed by Zytiga. But this is only a short time period. As far as I recall there a several studies looking at this and not all had this result.

[arete1105]

I appreciate all the replies. It is helping me to chart my next course.

[Magnus1964]

I would probably recommend zytiga over xtandi at this point. Only because casodex and xtandi work in similar ways. Then if zytiga failed, move on to xtandi.

[2dee]

In MY case Xtandi added to Lupron about 14 mos ago. Yes more fatigue, sleeping more, but it brought my PSA down to lowest it has ever been. Right now it appears that it is starting to fail. But I got a very good run. Now on to something else.

2Dee

[kaptank]

Abi first, then enza. One strategy suggested by the TRANSFORMER trial is to do BAT before enza to extend the use of enza. Abi and enza have cross resistance - if you take one, the other is less effective. But abi first gives less resistance to subsequent enza than enza first gives to abi. The BAT seems to reverse the resistance to enza. It is far less effective combating resistance to abi. Just a thought. There is no info I am aware of on resistance to Nubeqa. I am on abi and think the side effects on me are basically those of ADT.

[Chubby42 in reply to kaptank]

Hi KaptankI can work out Abi & Enza but what it the Bat.

Cheers m8

[kaptank in reply to Chubby42]

BAT is bipolar androgen therapy. There have been many discussions about it here. Also check the TRANSFORMER trial.

[spw1]

My husband was convinced recently to start Xtandi by his MO. He did say that Zytiga would also work but in his experience Xtandi was a potent drug and would be better for my husband. MO's advice was to start with 2 pills and slowly up the dose to 4 pills. PSA doubling time was between 2-3 weeks for my husband and we do not find out until early September whether Xtandi is helping or not. There is fatigue but he is working. With just Trelstar, he barely had hot flushes but Xtandi causes some. Motivation is affected. I think mood too but I am not sure if it is just down to Xtandi as we have other stresses too. We are keeping fingers crossed as it is early days.

[Tjc1]

Hi, ive been on xtandi for well over 2 years. I learned teo things. Take it at night and the dose can be reduced to a tolerable level. I take 1/2. Which is still working for me for the most part. COVID had me miss my Lupron shot. And i even feel better. But numbers are starting to climb. So next month i have to make the decision of lupron again or castration.

[Frigataflyer in reply to Tjc1]

Lupron Vs. Castration. For me this was a no brainer, I pay out of my own pocket for meds, so my Castration is saving me close to $5,000 a year and so far as side effects are concerned nothing changed, or if it did it was in direction of improvement.

[larry_dammit]

The side effects get better with time. 4 1/2 years now on Xtandi. Keeping me on the right side of the grass

[London441]

As you well know, he wants to move you ‘up’ to Xtandi because you need to continue to suppress testosterone. So if your current side effects are fatigue and sleeplessness, in a sense it doesn’t matter what drugs you ‘move up to’ to do it.

The drugs have differences , but are all going to produce fatigue and sleeplessness if they have been for you already. It’s the T deprivation that’s causing, not any particular drug.

As I always do, I ask what your exercise habits are. More exercise, especially resistance training, is the only reliable antidote. For most of us, trying different drugs to combat hormone therapy fatigue, if we are not exercising, is like switching seats on the Titanic.

[Madbeach]

Me and my hubby were also fearful of him starting the Xtandi because of the side effects but he bit the bullet and started taking it on July 9 and has not had any issues., and he has many other medical issues and that was another worry but so far so good. Good luck with it and with your journey.

[barrybayarea]

My Urologist had asked me why my Oncologist has not moved me from Zytiga to Xtandi, so I asked him, this is what he said - "The reason I recommend Zytiga now is that, when it stops working, there's still a 15% chance that Xtandi works afterward. When Xtandi resistance develops, there's a 0% chance that Zytiga will work afterward. Another reason is that our clinical trials infrastructure at UCSF is optimized for being on Zytiga first since that's what most patients do. If you take Xtandi first, it will narrow trial eligibility for you going forwards."It seems to be along the lines of what others have suggested.

[notso2855]

I have been on xtandi for 3 + yrs . no met s . very few but mild sides . 66 yrs old work every day . gleason 9 in 2013 , radical prostectomy by Vip Patel . bed radiation 12 mo later . psa 0 thanl the good Lord . Best

[Brundo]

Dear arette1105,

My father started Xtandi just over a year ago and has been undetectable ever since 🙏. We dreaded the side effects as well but he really doesn't have any and still works full time. He does experience fatigue from time to time but we all do. We just pray that this lasts forever . Take care !

[Grumpyswife]

We regret not taking abiraterone before Xtandi as it was definitely easier to tolerate at full dose. He only could tolerate half dose Xtandi.

One can also extend abiraterone by subbing dexamethasone for prednisone. Don’t discontinue abiraterone based on PSA alone. Only discontinue if disease progression is seen on scans.