Here in the U.K. , I’m possibly the longest survivor on Zytiga, at over 9 years since joining the drug trial of Zytiga at diagnosis in combination with ADT.
Six days ago, I was hospitalised with a potassium level of 2.4. I was rushed in and passed straight through triage, onto a heart monitor and started on a 4 hour drip of potassium. That increased K to 2.7, then another drip, but it dropped back down to 2.5. BP was 220/125! For the next two days I was on continuous drips to maintain the 2.5 level. BP around 200/100. A long discussion with my doctor, and an explanation about Zytiga (a little known drug here) about how it works, plus further info on other effects I had set her off on a complex investigation.
It appears the Zytiga may (and I stress may) have caused me to develop a something called Hyperaldesteroneism. All my symptoms fit. The next day, they gave me a drug which blocks Aldesterone and my K shot back to 3.6, normal, where it’s stayed.
I’ve searched the Internet for papers on this, but there are only two from 2011.
I’m in the U.K. is anyone familiar with others on such long term Zytiga who’s now having these issues?
Martin
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I have no practical advice, but just want to say you've been an inspiration and I was really hoping to get years and years out of abiraterone based on your experience. Sadly I only got a little over a year, but what a year it was. I can also confirm that non-oncologist doctors aren't familiar with this drug, and I remember having to tell my GP how to spell it.
Wow, you beat me to the line - I’ve “only” taken Zytiga for six years. Never had any issues with it. Now, just last week, I transitioned into Rucaparip instead.
I was switched to the Triton3 clinical study of Rucaparip mainly because I have a major defect in my BRCA-1 gene. My PSA is only rising slightly, now at 1.2, but scans have shown a met growing near my right hip.
That's why one always takes prednisone with Zytiga - 5 mg/day if you're still hormone sensitive, 10 mg/day if you are castration resistant.. But these are rough amounts, individual needs vary. What you are suffering from is called syndrome of secondary mineralocorticoid excess. Symptoms are low potassium, high BP and edema. It means you weere not taking enough prednisone. This is explained here:
I’ve been monitored every 8 weeks. Full bloods etc. My wife passed away on Christmas Eve, my birthday is Christmas Day, resulting in very high stress. I started to see the sudden drop in K shortly after, along with numerous other side effects. I’ve a meeting with endocrinologist at The Christie shortly.
Congrats on that record, keep being well. Maybe the Dr will give you a break..or like a Zytiga vacation! I've been undetectable on 1000mg Zytiga for 6 1/2 years, taken with 10 mg prednisone, with three short breaks due to Insurance snafus, but my potassium is around 4.0 usually.
My issue is RBC creeping lower, usually at 3.8 to 4.0, but dropped to 3.5 last test(anemic).
I looked at these stats and My MO didnt want be to do Zytiga because I have coronary artery disease (30% blockage in 3 small arteries and Angina during vigorous exercise). Have you had any of these problems:
Hepatic
Very common (10% or more): Elevated ALT (up to 41.9%), elevated AST (up to 37.3%)
Common (1% to 10%): Elevated total bilirubin
Postmarketing reports: Fulminant hepatitis, acute liver failure and death[Ref]
Cardiovascular
Very common (10% or more): Hot flush (up to 22.3%), hypertension (up to 21.6%)
Common (1% to 10%): Arrhythmia, chest pain/chest discomfort, angina pectoris, atrial fibrillation, tachycardia, myocardial infarction/ischemia, cardiac failure (e.g., congestive heart failure, left ventricular dysfunction, decreased ejection fraction)
Frequency not reported: QT prolongation[Ref]
Musculoskeletal
Very common (10% or more): Joint swelling/discomfort (up to 30.3%), muscle discomfort (up to 26.2%), contusion (up to 13.3%)
Very common (10% or more): Lymphopenia (up to 38.2%), anemia[Ref]
Metabolic
Very common (10% or more): Hypertriglyceridemia (up to 62.5%), hyperglycemia (up to 56.6%), hypernatremia (up to 32.8%), hypokalemia (up to 28.3%), fluid retention/edema (up to 26.7%), hypophosphatemia (up to 23.8%), elevated alkaline phosphatase, hypercholesterolemia[Ref]
I have only had slight arrhythmia, monitored every 4 months, muscle aches, yes, hairline fractur of tibula 5 years ago. Also anemia, RBC was a low of3. last month. AST and ALT are in the good range each test, alkaline phosphate is not elevated(normal range) Other than that and the PC thing..fit as an old fiddle! Take care Brother..hey my own Brother is a George, great name!
Sounds good Dan, thanks for the feedback. I'm glad to hear that you are doing well and seems like you will continue to do well for a long time. Have a good weekend! You're brother has a good name:)George
What was your diagnoses when you first started Zytiga?
PSA was 571. Gleason 4+3. Seven major bone Mets to skull, shoulder, two ribs, pelvis and both femurs, plus multiple small Mets all over. Within 12 weeks PSA immeasurable, where it’s stayed continuously for 9 years.
Wow, my Husband has just started Zytiga after Bicalutimide did nothing for him, Hoping it works as long for him as its worked for you ! Well done that man.We are also in the UK
Hi, I’m so happy to hear someone talking about zytiga because I cant find anyone else talking about their experiences. My dad ia on it and I care for him. We were warned about the potassium issues it can cause, but he hasn’t experienced. But he has only been on it for 3 months. His PSA didn’t start to drop till the 3 month, which scared us to think it wasnt working. Come to find out zytiga can take a while to start working on some people. It still hasnt dropped his alkanase phosphate which has us worried. Can I ask what combination with zytiga you have had 9 years blessings with? Stay in touch. Dad has a dr apt next week and we will share info we get.
Congrats on 9 years with Zytiga and may you continue to have more years with or without it. Condolences on your wife's passing. May she rest in peace. Been on Zytiga/Prednisone for a couple of years myself. Thanks for being part of the trials.
I had a similar incident in July. Zytiga has an affect on Potassium and lowers it, that coupled with a super low calorie diet and heavy workout load did me in. I got away with a single IV bag and now am on Potassium supplements and have changed my diet. My doctor new exactly what it was and my oncologist chewed my ass for the bad diet plan.
Nine years is just super. So sorry about your wife. Holidays are strange after losing a loved one. Every day is strange for a long time. One day at a time. You will get through this.
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Best wishes to you, sir.
lol
Is long-term remission even possible with my stats?
Problems with Zytiga?
Worrying study on long-term ADT (esp Enza)
1 Year after taking Zytiga (Abiraterone) PSA from 750 to 54 
Vacation or Zytiga...Onco says Zytiga...
