Connect
Has anyone had severe side effects from abiraterone (Zytiga)?
I was diagnosed with stage 4 prostate cancer at the Cleveland Clinic in February. Received a 6 months dose of Leuprolide (Lupron) on March 5th with no notable side effects. On March 31st, Abiraterone was added. Within a few days I began retaining fluids in my legs and ankles. Within a week I had severe swelling of my legs and ankles and difficulty breathing. My oncologist cut my Abiraterone from 1,000 mg to 750 mg and prescribed lasix for a week. This improves my symptoms but I still had swelling of my legs. Over the next month I had three more incidents with the last putting me in the hospital for 4 days on intravenous lasix to improve the condition. Now on daily oral lasix but still retaining fluid and have swelling.
Has anyone else had severe side effects while on Abiraterone? Are there alternatives to the Abiraterone? I have an appointment with my oncologist later this week and I'm definitely going to discuss an alternative.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Yes, there are alternatives. Abiraterone is an old medication (in cancer terms) that's out of patent and thus, relatively inexpensive.
The newer generation of ARSIs — the so-called "-lutamides" — are dramatically more effective in many/most cases and don't require a steroid to manage severe side-effects, but because they're expensive, I understand many U.S. insurers push back.
(Note that I'm not a doctor, and I'm sure there are situations where Abiraterone genuinely is the best treatment, not just the cheapest.)
-
Like -
Helpful -
Hug
2 ReactionsWhile I was on Zytiga I got high blood pressure and I had three Afib events, The third one ending up in the hospital for four days. At that point I switched to Darolutamide and things have been going really smoothly since then. It’s even kept my PSA lower.
Yes, edema is another side effect of Zytiga, I’ve had it off and on, but just very minor cases. Shortness of breath is another symptom.
-
Like -
Helpful -
Hug
2 ReactionsWhen you had “no notable side effects” within a few weeks from Lupron, that should have raised a red flag (as to whether or not it was working).
> what was your testosterone level prior to and since being on Lupron? (Lupron causes suppression of testosterone; if your testosterone doesn’t drop, you won’t have side-effects. If your testosterone does drop, you should/will have side-effects.)
There are various androgen receptor pathway inhibitor (ARPI) hormone therapies to choose from: Zytiga (abiraterone), Erleada (apalutimide), Xtandi (enzalutimide), and Nubeqa (darolutamide). Each has its own unique side-effects; your medical team should find the one that works best for you with the most tolerable side-effects.
FDA-approval dates:
> Zytiga: 2012
> Xtandi: 2013
> Erleada: 2018
> Nubeqa: 2022
Each was designed to be an improvement over the previous ARPI based on side-effects while still being effective treating the disease.
Good luck.
-
Like -
Helpful -
Hug
1 ReactionYou are so so right-agree
-
Like -
Helpful -
Hug
1 ReactionAsk your Dr about cutting your dosage to 250 mg, but taken with a meal. There is significant research showing that the absorption of 250 mg taken with a meal equals the absorption of 1000 mg taken while fasting. It might reduce side effects - I don’t know.
-
Like -
Helpful -
Hug
1 ReactionZytiga (Abiraterone) was first approved in 2011. Not that the exact year is significant, but there's a gulf between Flutamide and Abiraterone as first-generation ARSIs and the so-called "-lutamides" — Darolutamide (Pfizer), Apalutamide (Janssen), and Enzalutamide (Bayer) — as a family of similar 2nd-generation ARSIs.
It's not a chain of gradual, incremental improvements. Instead, the differences within the -lutamide family are that each is approved for a different, overlapping set of cancer situations (metastatic/non-metastatic, castrate-resistant/castrate-sensitive), has different risk profiles (e.g. Darolutamide has a slightly lower risk of seizures), and was developed or acquired by a different major pharma company.