Xtandi is my next treatment

Xtandi is my next treatment

Hi, I'm new here. Was diagnosed with PCa in 2015, Stage IV, PSA 22.2 when diagnosed mets to brain, spine and hips. I don't have a Gleason since they have never done a prostate biopsy. I've had an Orchidectomy, Radiation to my brain and then had 6 rounds of Taxotere and then again radiation to my spine and currently my hips. Finish this next week and then they want me to go onto Xtandi. My fatigue is at an all time low, hardly able to get up to go to the bathroom, is this Xtandi going to knock me down even more??? From what I've read fatigue is the main side effect, but since I'm already so fatigued, hoping it won't get any worse......experiences out there??

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  • Do "they" know that a study found that guys who had Zytiga before Xtandi lived longer (4 or 5 months, I think) than guys who had Xtandi before Zytiga? Also, maybe you're 1 of the guys who won't get fatigue from Xtandi, & maybe your current level of fatigue will greatly improve when you finish that series of treatments. Good luck!

  • Neal-Snyder , do you have a reference to that study claiming that starting with Zytiga is superior to starting with Xtandi? I've never heard anyone mention this before. - Len

  • Hey Len,

    I also read this in a post from Alan, I think. I'm gonna search for it.

    Joe

    Now I looked, but didn't find the info. I think now it was in a post by Patrick, and he's got a sh+tload. I'll jet him a post and see.

  • Joe,

    I think you may be thinking of a posting I made in which I said that I seemed to recall that Zytiga + Prednisone was thought to be a little easier on the patient than Xtandi, but that Xtandi was thought to be a little stronger in terms of fighting the cancer.

    I don't have references for those statements and don't claim that they're definitely true, only that I seemed to recall reading them.

    I haven't seen the article that Neal has read. I'd be curious to know if the article really is accurate, and if they have a theory about why they found that Xtandi after Zytiga worked better than Zytiga after Xtandi.

    One thing I've learned about scientific publications in medicine is the wild variability of results that different researchers get. It seems to me to be incredibly easy to run poorly designed experiments, on biased samples, and with flawed analysis, to get false conclusions. I try never to rely on just one study for any hard conclusions.

    Nowadays a lot of the studies are "meta-analyses" where the authors don't do any scientific research, they just read the literature and summarize it. Maybe that helps, but I think sometimes it's like the effect Wall Street got just before the big crash of 2007 when they packaged hundreds of bad mortgages into big pools and then imagined that they had eliminated the risk of error by averaging things out.

    Alan

  • Not scientific but my husband decided to start with Xtandi because it was easier to tolerate (so we heard) plus it did not require pred -- which really kept him awake and bothered generally during chemo. Our thought, for whatever it's worth, was that if Zytiga was harder to tolerate then why not do that when he was feeling cruddier, v. now when he actually feels pretty good. After early Docetaxel (CHAARTED protocol) but quick progression to failure of bicalutamide, he continues on Lupron (q.3 mos) with Xgeva (1mo) and has been on Xtandi over 1-1/2 years with stable scans and very low PSA, recently tiny creeping up. He's very pleased with the Xtandi, and we are happy to have Zytiga waiting in the wings (yet hoping to keep it waiting!)

  • Thank you for your insight! I'm so glad that your husband is doing well on the Xtandi, I'm praying for good results as well! God bless!

  • My urologist said the exact opposite, that there have been a slightly better result from Xtandi than Zytiga.

  • Thanks for the info, cfrees1. I don't think anyone knows the answer to this because it hasn't been studied. Each medonc has his own opinion but it's only an opinion based on their own practice. I'm not aware that anyone is actually compiling stats on this.

  • No, there actually is a study that he referenced. The difference was pretty minor, like a couple of months. But he said if we were going to choose between two similar treatments, might as well choose the one with better outcomes, no matter how slight. i don't know the details of the study though. :)

  • I'd have to see the study before I believe it. The devil lies in the details. I imagine it would not be easy to find patients who are matched close enough for a meaningful comparison, i.e., Gleason score, prior treatments, extent of metastases and location (bone, soft tissue, both), etc., etc.

  • I think you are correct actually. I believe my uro was comparing two different studies, one where Zytiga showed a 10 month improvement and one showing Xtandi offered a 14 month improvement. (TERRAIN and STRIVE) So they were not compared one vs the other exactly.

  • They wanted to start with Zytiga but I'm not able to take prednisone, I have bad side effects!

  • Welcome to the group. I've gone through lupron, then an orchiectomy, then six rounds of taxotere and then six weeks of radiation. I started xtandi about the same time as I started radiation. I was diagnosed 3/17/2015 with a PSA of 66, Mets to bones, and about 30 lymph nodes full of cancer. I was a Gleason 8. My fatigue started with the taxotere. I've found that exercise helps with the fatigue. It also builds up endorphins for the pain. Mental attitude is really helpful too.

  • Hi - I have been on xtandi since last February, starting with 2 pills then ramping up to full dose of 4 pills for a while and recently ramping down to my current level of 1 pill per day

    I was told I would be fatigued but when I started taking it I was surprised that I basically felt no fatigue- dr could not explain why

    Also on metformin and avodart

    Sorry to hear about your struggles

    I suggest you ask for metformin and avodart. If your dr not familiar with benefits have him look up dr Myers presentation on long term durable remission

    I also had genetic testing done and found out which genes were damaged , Caris labs also includes drugs that can or can't be helpful

  • Thanks. I'll do some research on this. I was on Metformin for my diabetes prior to being diagnosed with PCa but had reactions to this. I'm not familuar with avodart, I am on Flomax, so I think that's kinda the same category.

  • I was on Xtandi for 32 months. It wasn't until the last few months that the Fatigue became more than I could handle. Also my PSA started to rise from it's nadir (0.07). Diagnosed in 2012, PSA 17.5, Gleason 9, with bone mets in Pelvis and Spine. Been thru two trials without success, just tried Zytiga, which provided only one month of benefit, then severe dyspepsia. PSA now 21.8, liver and lymph node mets. I assume next step will be chemo. Good Luck to you and best wishes!

  • Thank you for your response! Hope I have 32 months!! Best of luck to you!

  • Hello, sorry you have to be here. You've had a lot of treatments and fatigue is to be expected. Radiation really took it out of me. Xtandi probably won't make it much worse. I've been on Zytiga+Prednisone for several weeks now without any noticeable side effects. Good luck Jash.

    Ron

  • Thanks Ron, I've been following your responses and respect what you have to contribute!

  • I have concerns about doctors who start patients on zytiga or xtandi when casodex has not been offered to begin with. Is cost the determining factor? All 3 drugs attach cancer in same manor each with it's specific chemical approach. It seem to me doctors ignore older drugs.

  • I was on Casodex for 2 weeks prior to my orchidectomy, so now I don't need to take it

  • Hey, I also am wondering, when I received Taxotere I developed severe neuropathy in my feet, still have it sometimes. Will the Xtandi also do this? Realize I have Diabetes too but never had neuropathy before the Taxotere.

  • " Enzalutamide (MDV3100, Xtandi, Medivation\Astellas) is an oral inhibitor of androgen receptor signaling which blocks androgen-receptor interaction; inhibits translocation of the androgen receptor to the nucleus; impairs androgen receptor binding to DNA; and inhibits co-activator recruitment and receptor mediated DNA transcription." Normal nerve tissues are unlikely to be harmed by Xtandi, the way they can be harmed by the cell killing chemotherapies, such as Taxotere (docetaxel), which can cause neuropathy to nerves, and other side effects to other fast growing cells in the body, e.g. nails, hair follicles, digestive system linings, etc.

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