starting xtandia

[linpisarn]

Any suggestions for beginning xtandi after being on zytiga for 6 months?

[RyderLake2]

Xtandi (enzalutamide) can cause fatigue and/or drowsiness so take the pills before bedtime.

[Trengle in reply to RyderLake2]

I started my Xtandi in the morning like I took the Zytiga and it was kicking my butt! I then moved to just before I go to bed and it has been much better but still a lot more fatigue with brain fog than I did with Zytiga...some days better some worse but still here! I am wondering about the low blood pressure I am experiencing as high BP is supposed to be a side effect. Been on Xtandi for about 6 weeks part of the Prostar clinical trial.

[Tall_Allen]

Try switching to dexamethasone first; ramp down off dexamethasone or prednisone slowly

[Magnus1964]

Why are you stopping zytiga? Is your PSA rising?

[linpisarn in reply to Magnus1964]

Yes, went from 11,then 13, and 50 last month. Starting point was 260

[Longterm101 in reply to linpisarn]

When were u Dx? Gleason ? Bone Mets?

[larry_dammit]

Take it at night with food, It says you can take with or without but gives me a upset stomach. I take mine at 7:00 pm seems to be the best for me. Watch out for the pain meds. It does not like OxyContin,gave me sever leg pains , had to switch to morphine ,no problems since.

[skateguy]

Start out with one each evening for two evenings, and ramp up to 2, then 3 then 4. It's an adjustment. I started out with four and was told to stop because of mental fatigue. The second time around I ramped up the dose over a week or so, and did much better.

[j-o-h-n]

Tell about yourself. Age? Location? PSA/Gleason scores? Treatments to date? Treatment center(s)? Doctor's name(s)? All info is voluntary but it helps us help you and helps us too.

Thank you....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/18/2019 11:33 AM DST

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

65 years old.

Diagnosed 3/19 ,back pain and psa 280, never had a biopsy. Five radiation treatments 3/19 and started zytiga and Lupron 4/19. Good initial reaction to both, psa 5/1 33: 6/1 11.3; 7/1 11.7; 8/1 13.2; 9/1 50. Went in for scans and mets on lungs have disappeared but is widespread on bones. Changing to xtandia ASAP , waiting for approval from Kaiser in Seattle. Contemplating changing insurance to Seattle Cancer Care but I like my new oncologist at Kaiser

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

Thank you for your response.... My only comment is to quote our previous president "If you like your own doctor, you can (should) keep your own doctor"... Keep fighting... God Bless...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/18/2019 1:22 PM DST

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

Thanks for the good words.

[Hidden in reply to linpisarn]

That's unfortunate that Zytiga didn't work very long and your psa didn't get lower than 11 on that drug. Usually, but not always, the next drug (Xtandi) works a shorter amount of time if it works at all. Hopefully you will be one of the ones that respond better to Xtandi. Zytiga worked for my husband for 9 months before he switched to Xtandi. Xtandi slowly lowered his psa to just under 2 after 4-5 months but it has been rising again the last three months. We will see what the doctor recommends soon.

[Hidden]

After 22 months on Xtandi, I think I can say I have some experience with it. It did save my life after a disastrous 4 rounds of Docetaxel left me in deep trouble.

Full dose (4 capsules a day) does tend to make some brain fog and peripheral nephropathy (reversible in time). Potassium levels become more difficult to control (take potassium WITH CARE if there are shortage symptoms - like leg cramps, swollen ankles, irregular heart beats or PVC's ). Watch high blood pressure caused by shallow breathing - it can go to dangerous levels. The "faulty thermostat" from ADT hormone treatment becomes worse. Imbalance issues can be dangerous if these come your way. Usually ignored is the kill-off of about 30% of the gut biome (constipation may result) which of course is counter-productive as it also reduces your immune system which has to do all the killing. Counter that problem with as much raw veg and fruit as possible. Zero sugar and wheat, commercial fruit juices (pure sugar poison!). etc. Many users of Xtandi have to stop after a few months because of "allergy" problems (a pity, but "the book" does not allow for lower doses).

Several members of this forum have made posts that reduced doses (2 caps per day, and even 1 cap per day) seem to be as effective as the full 4 cap dose. I would suggest the 4 per day for a couple of weeks, and see what the PSA is doing. If it is going down, you can start experimenting with lower doses. Ignore your Onco's reservations - the "book" about Xtandi is proving to be very incomplete. Personally, I suspect they arrived at the 4 x 40mg daily dosage because it was the maximum sustainable dose without really serious side effects - and of course very profitable.

If the PSA hangs about at the 50 level for too long, you must seek out a Vitamin clinic who will give you intravenous Sodium Ascorbate (not more than 50 grams per IV) - every 4 days if you can, but weekly also OK. That should drop the PSA fast and stop a lot of mets growing that will soon cause extra niggles you can do without.

After a full dose start with weekly IV's (which dropped my PSA by 95% in 4 weeks), I eased back to just 1 Xtandi capsule a week the night before 25 grams of Ascorbate via IV. That low dose does not work forever, but I got 9 months of PSA <0.1 on that regimen. Side effects effectively zero.

The Xtandi (like all the other medications) does not kill any cancer, but it about triples the killing effect of Sodium Ascorbate which does directly kill cancer cells. Right now, I don't know of a better killing combination if one's own immune system has been trashed. Good luck to you!