My Zytiga Journey

Hi SR
I'm not the actual pill taker, but since he's at a noisy restaurant watching a Browns game our cable package doesn't offer, I'll fill in...

My husband does just what you're planning. Eats a not-so-late dinner, and then several hours later, just before bedtime he takes the 4 zytiga pills. He hasn't complained of any sleep side effects, but he has had soreness in his legs that I think is due to the zytiga (he's on a bunch of drugs now, but what he describes seems to fit with a zytiga SE best -- I don't recall the percentage, but the zytiga website says some guys experience joint pain and soreness). I don't think it's terribly severe. My take is the pain itself isn't the problem, as much as the fear it gives him that bone metastases are progressing (he had bone mets on one thigh bone -- well still does I guess, but the lupron/etc. had wiped out his bone pain a few months ago).

Getting the drug -- you're right, that was no easy feat for us either! I am usually a very conflict-avoidant type person, but I did have to raise a little heck to get that straightened out. We were bounced from pharmacy to pharmacy, and eventually got it via mail order as no one in town could provide it (we live in Cincinnati, so a reasonably big city).

I hope it crushes your cancer while the rest of you escapes unscathed
Katie

I've been on zytiga since jan this year. I have to get from a pharmacy in phoenix az. My insurance has been covering it at this time. The copay at the first of the year was high but the pharmacy found help for me from the patient advocate foundation. It was working good till they ran out of money. I take my pills in the morning when I get up. I wait an hour the eat and take my prednisone pill. I am pleased with the results. My psa has dropped from 23 in jan to 1.9 this past week. I am having some swelling in my feet that bothers me and the hot flashes are great fun.

Thanks, all who responded. Good to know that late-night ingestion worked for someone.

Update--I have found a mail-order outfit (Curascripts) that will send me Zytiga. I am a little surprised that Curascripts will send the drugs and have them "left at the door" without signature, etc. That is maybe $5000 sitting in a box out in the open!! But, I guess if any would-be thief has no idea of the "value", then we are OK. Besides, who's gonna buy something CLAIMED as "Zytiga" from someone off the street??

Post Edited (sequoiaranger) : 9/29/2012 12:12:33 PM (GMT-6)

My husband no longer is taking Zytiga. We have an entire bottle (minus 4 pills) sitting in our refrigerator since he was taken off of it. I don't have the heart to throw them out since they are so expensive. Anyone have any suggestions what we can do with them? Seems like such a waste of $5,000 even though our insurance picked up the cost.

Wishing everyone lots of success and low PSA's.

Zimac

nhwife,
How are things with you and your husband. I think of you often.

We never did make the GFMPH this weekend as my husband developed blood clots in his lungs (PE) last week. The docs did not want him traveling and far away from home. It's been a long haul but hopefully we are heading in the right direction.

Hoping you are both enjoying the weekend.

Zimac

Jitters99, that's a good idea. We can ask our doctor if anyone needs it...
Zimac, I am sorry you didn't make it to the weekend - you were looking forward to it. Hope your husband is doing ok now. My husband has had a rough patch: returning pain in the lower back. The MRI did not show anything so we think the next step may be to consult with his regular doctor and look into nerves/discs. So right now, he is doing fine, dealing only with the SE of fatigue. I think of you too!

Fingers crossed for no side effects and a fantastic cruise!

Taxotere started in March, 2012; it failed by June. June & July lots & lots of pain from all the bone spread. Aug. 8, I started Zytiga; due to a missunderstanding, i took only one pill a day for 30 days (still within the guidelines of treatment); then i jumped up to 4 pills a day. I take the pills around 11:30 am (give or take 15 minutes..depending on a late breakfast or not) then an hour later lunch. I take the 5 mg prednisone with lunch and breadfast. The prednisone works with the Zytiga as i understand it and best when taken with food. Just the other way around for Zytiga. One of my infusion nurses said: word to the wise, do not take the prednisone late..it will keep ya up. This has worked well so far. The pain that had become chronic and awful, came to a hault in just a few days after Aug. 8th, and after a couple of weeks...i needed not a one, pain pill i mean. And i had been living off the suckers. ___________________________________________________________________________________ PSA april of 2011.. 600.47 / orchiectomy june 3, 2011 / PSA late sept, 57.00 / then back up. Summer of 2012 high PSA's @ and over 1,500. Aug 8th PSA still in the 1,500s / three weeks ago down to 92. (only had taxotere before and nothing else; and no other spread yet except to bones) __________________________________________________________________________________

Late October Update:

I indeed went on a 15-day cruise the day after taking my first dose(s) of Zytiga. All went well for about a week, then I started getting INTENSE bone pain in those "known cancer areas". I drugged up on pain-killers, but that is NOT the way I want to live. So to *WHAT* can I attribute the intense pain? Is it the Zytiga "working", or...?

Intermittently, I feel GREAT and ALMOST back to my "old normal", though I am far weaker than I was a year ago pre-radiation/chemo/Zytiga. THEN the pain hits, and I wonder if THIS is the "new normal" I will have to endure??

I have not given the Zytiga adequate time to work, I know, as it has only been two weeks+, but....!! I meet with my oncologist in a few weeks, will get a PSA test, and will re-assess. Meanwhile, I "worry" that if the Zytiga is NOT working, I am losing valuable time while the cancer grows. Guess that "worry" comes with the territory, so to speak.

Anyway, I have been taking the Zytiga late at night (with prednizone, which I may take earlier---I have had some wakeful nights) since the "requirements" are two hours AFTER meals (or one hour before) on an empty stomach.

I certainly have NOT had the bad SE's of chemo, and my chemo neuropathy has diminished (still there, but weakening). I no longer have the heartburn, the "ill" feelings, EXTREME fatigue, shooting pains, or queasiness that chemo brought me, plus tiny hairs are once again protruding from my body in all the places pre-chemo.

Silverlace48--Started your Zytiga regimen yet??

Post Edited (sequoiaranger) : 10/21/2012 12:22:24 PM (GMT-6)

My husbands Oncologist has a patient who has been on Zytiga for three years already and is still doing well.
May you and Raddad be blessed with similar results.

Zimac

I pray every day that PC fighting drugs like Zytiga work for all you advanced PC guys. Raddad is in my thoughts and prayers everyday, he is one of my bestus HW buddies and holds a special place in the hearts of my wife and I. Fight on all and defeat the beast!

Terry

Today I have a LOT of "underlying" bone pain--that is, there is not enough pain to "exclaim" or even moan, but if we assigned a pain number "4" to where one expresses, I am at 3.5. And it just ****ing won't go away. The mild opiates I take dull it down to maybe a "2" but it is THERE!! I suppose I could "eliminate" the pain entirely but taking a WHOLE LOT of the mild opiates, but then I can't drive or am in a "haze". Looks like a "legal junkie" is my future!

I see my oncologist next week (first time follow-up since starting on Zytiga) and will get a PSA test, and maybe set up a bone scan (I *KNOW* it will show spread since last spring). I gotta know if this is working (supposedly doesn't work 20% of the time, like the Provenge that failed me) or if I need some other "Hail Mary" play to reign in this monster.