Xtandi positive outcome?

[Coldwell01]

My father 93 has stage 4 prostate bone cancer. He is on eligard and was taking yonsa but it quit working. PSA went from 1 to 8 in 6 months. He just started xtandi yesterday. He had some leg twitching last night for a few hours. Went away this morning. Doctor said to take one tablet today and see how it goes. Is this a side effect? Anyone having a good outcome with xtandi?

[LearnAll]

Xtandi (enzalutamide) can cause Seizures in some men, Because Xtandi irritates the Brain tisssue, it is possible to cause twiches . Lowering dose might work. Let your doctor make final decision.

[RyderLake2]

Hello, No leg twitching but I have been taking Xtandi (enzalutamide) for three years and nine months. Side effects fatigue, loss of libido etc. are tolerable. I am on the full enchilada of four pills. I will be 76 in a couple of months so much younger than your dad. Hope that helps.

[Coldwell01 in reply to RyderLake2]

Thank you. Any information is good. Has your PSA gone down?

[RyderLake2 in reply to Coldwell01]

Hello, Well my PSA at diagnosis was a little below 1700. That was a week short of eight years ago. It is currently at 0.026 which is slightly higher than the previous month's reading of 0.015. Prior to beginning Xtandi my PSA was 3.4. So it has definitely gone down and it has been down for quite awhile. Hope that helps.

[Coldwell01 in reply to RyderLake2]

Thank you

[johnps30 in reply to RyderLake2]

That's very encouraging. 3 years and 9 months would be wonderful. Thanks John

[RyderLake2 in reply to johnps30]

No worries. Keep battling. The glass is always half full never half empty!

[Kaliber]

Been taking Lupron Xtandi for 32 months ... psa 1400-1600 when started. Taking the whole 4 pills of Xtandi, and my psa has been undetectable at <0.1 for 31 months and counting. I’m among the 12% that experience the heavy side effects but it’s well worth it for such an extended life. It’s working well for me.

Best wishes ❤️❤️

[Coldwell01 in reply to Kaliber]

Thank for your response.

[Kaliber in reply to Coldwell01]

💪💪💪😊😊❤️❤️

[johnps30 in reply to Kaliber]

How long before you knew the side-effects would be an issue? How many days before you reached full saturation? It's only been a few days, and each day seems a little less buzzy. Not feeling any indications of potential falling - but I'm not going to assume anything. John

[jhrocket]

I got my dad off Lupron............he used 8 to 10mg of topical progesterone stayed in remission for 7 years with the exception of one time 3 years in when he stopped following directions. You must move the progesterone every time you put it on or the skin will block its entry into the blood stream. Dosage is critical...too little it doesn't work, too much it makes the cancer grow.................try it many people get relief......for some reasons the urologists/ oncologist don't know it!!!!!

[Coldwell01 in reply to jhrocket]

Thank you. I will check into it.

[johnps30]

I just had my 3rd dose today and am tolerating it very well. Had a headache the first night but not last night. I'll be 74 in a few days, but I read that activity will help push the medicine throughout the body and that's important, so my goal is to be even more active after starting. So many are reporting good results, so I'm optimistic. We can trade stories. 👍And, because of the possibility of falling, I will be more self-conscious of rising quickly and watching my step. John ps we're all pulling for your dad!

[Pinkpeanuts07]

Hi My dad is also 93 with stage 4 PCa( mets in shoulder and left hip). Started Xtandi 23/03/21. He has tolerated Xtandi well, but has recently started to get pain in back which eases with paracetamol. He has heavy legs but this was a problem he had before and which the oncologist is aware prior to treatment. No other discernible side effects as yet. So far his PSA has lowered (15 to 6.6) and the severe bone pain in shoulder greatly diminished. Unfortunately he’s had other health issues eg Shingles and anaemia which get him low. Because of the increased risk of side effects of Xtandi in older men (75+), my dad has been prescribed a lower dose .

Best

Rose

[larry_dammit]

could be a side effect due to other drugs he’s taking. Xtandi does not play well with other drugs. You can talk to the pharmacy at xtandi any time there very knowledgeable and glad to help