How late is too late for Abiraterone?

[Jlcwonderboy]

Here in the UK, Abiraterone (Zytiga) is not currently offered as a front line treatment alongside ADT (presumably because of the high cost to the NHS) and is only offered once initial hormone treatment has been judged to have ‘failed’. However, as we are all well aware it has become apparent through multiple trials that the most significant benefit that can be wrought from Abiraterone is to get this ‘early’ to potentially push back the point at which the cancer becomes castrate resistant (and therefore extend life).

My father was diagnosed in July of 2017 and so is still in the hormone naive phase (he is receiving ADT and has had 6 cycles of Docetaxel). The hope is that he might have another year before castrate resistance (general consensus is that this ‘window’ lasts 18 months).

My question is what members here feel is meant by ‘early’ in terms of Abiraterone treatment. Do we mean early in that it will need to be provided ASAP after diagnosis or early in that it is provided before castrate resistance (and still be as effective as suggested in the trials). This is important as there is a small (miniscule) chance that the NHS will agree later this year that Abiraterone should be given as standard front line treatment (it is under review by Govt).

Will it mean that my Dad could still receive this ‘early’ as he might do so before he becomes castrate resistant or do members feel that ‘early’ really does mean early and that real benefit would come within starting on Abi within a few months (eg) of diagnosis?

I know that no one here is likely to have an answer to this, but I’d be interested in gathering thoughts and opinions. The word ‘early’ is thrown around a bit in relation to many treatments (incl. Docetaxel chemo) but without much detail on what this means.

Best wishes to all

[Dr_WHO]

At least according to my medical oncologist your dad should still be able to take Zytiga (with prednisone). I was diagnosed in January 2016, surgery in March 2016, started with Lupron in June 2016. Then, thirteen months later in July 2017 my medical oncologist put me on Zytiga (with prednisone). For me, the reason for the 13 month delay between start of Lupron and Zytiga was because it was not until June 2017 the results of the Stampede and Latitude trials were published.

You dad should still be in the “sweet zone” for adding Zytiga.

Please know we are all pulling for your dad, your fame and you. You are all part of our family here. People like us we have to stick together!

[Jlcwonderboy in reply to Dr_WHO]

Thanks Dr_WHO - it means a great deal to hear your kind words.

I’ve seen you message on this group regularly and have never failed to be impressed by your wisdom and kindness in support of others. It is a wonderful feeling knowing that there are people as generous and impressive as yourself fighting the fight, shoulder to shoulder

[BigRich]

I started Casodex mono therapy in 10/2015; 150 mg. daily. Lupron (Lucrin) in 05/2017, and Zytiga in 11/2017. Zytiga is working for me, There is hope.

Rich

[YostConner]

I hope you can get early use, but if not, I hope you find some comfort in knowing I was a late user of Zytiga (mCRPC and post-Provenge), and I got 32 good months out of it. I’m pulling for you and your dad.

[Neal-Snyder in reply to YostConner]

I didn't get Zytiga until after RRP, EBRT, Lupron alone & then with Casodex all failed, leaving me with mCRPC. It worked for almost 3 years, so I agree with everything Yost says. The effective time varies a great deal. For some it's a few months, & for some it's quite a few years. It's an easy regimen--4 pills on an empty stomach, daily. The only problem for me was that the only possible time of day for me was bedtime, & I'm usually eating fruit & nuts & seeds closer to taking Zytiga. So I either had to have my snack earlier or stay up too late.

[MyDad76]

Same in Slovenia - Zytiga only added after hormone resistance. Reason: cost to insurance, of course...

I would like to ask Re info on 18 month window. Is generally accepted? I got the impression from reading stories that it varies substantially from person to person.

[shealy]

The amount of time on ADT is different for everyone. I had been on Lupron alone for 2 1/2 years and still no PSA. >.01. Taking a holiday for a while to prevent oteoporosis etc. So far so good. Don't fall for the median versus average etc. Just take your situation day by day year by year. Nobody can predict our future.

[AlanMeyer in reply to shealy]

As shealy says, time to castrate resistance varies dramatically for different men. I have known of cases where men are castrate resistant almost immediately after diagnosis, and I know a case of a man who has apparently lived 30 years on ADT alone and still has a low PSA.

Zytiga is a great drug but my interpretation of the trial results is that ADT + docetaxel has reasonably similar outcomes as ADT + Zytiga. I don't know of any trials of all three drugs given early together, so we don't know what the effect of that might be. It may be that your Dad will do about as well on the treatment he's had as he would do with early Zytiga.

If your Dad has a very low testosterone level, that's a good sign and may mean that Zytiga is less significant than for a man whose T level is relatively higher.

Best of luck.

Alan

[taylor123]

My Dad started Zytiga on his second round of ADT.

He did 12 months of ADT followed by a 2.5 year holiday, then when he restarted his second round of ADT he added Zytiga in 4 months later to replace Casodex.

[1969andy]

Something that strikes me with this thread, and so many others, it the ONLY measure of success (or otherwise) of treatment is PSA.

I have not read about repeat mpMRI and bone-scans or, even, biopsies.

Am I missing something?

Based on PSA as "the" determinate", given my mine went from 12 to 1.1 after 3 months of Bicalutamide and Tamoxifen, can that be judged as "successful" so far.

The reason I ask is that my oncologist (UK NHS) wants to progress me on to Zoladex and chemotherapy.

[vandy69]

Good Morning Jlcwonderboy,

I was fortunate to have Dr. Charles Myers as my Med Onc after I was diagnosed in 8/2012. Please see bio for complete treatment history.

He immediately put me on triple blockade of Lupron, Casodex, and Avodart. As soon as Zytiga was FDA approved for use prechemo, he added it in 1/2013 (5 months after diagnosis). Fortunately my drug plan was commercial (not Medicare) and I got a coupon deal from the drug manufacturer, as Zytiga was extremely expensive. It worked for me for approximately 18 months and then Dr. Myers tried high dose ketoconazole

Best wishes, Never Give In.

Mark, Atlanta

[Litlerny]

Hi, Jlc

I was Stage 4 with one bone Mets at diagnosis in May, 2015. I’ve been on Lupron and bicalutamide since then. “Early” is a rather nebulous term. I didn’t start chemo with docetaxel until Nov., 2017 (2 1/2 years later). Apparently, my oncologist at the Mayo Clinic in Jax considered it “early” since my PSA has remained consistently undetectable, I’ve been asymptotic, and at my most recent PET scan my bone scan didn’t even “light up.”

Prior to starting my chemo I asked my oncologist about abiraterone as an alternative. He told me I could get it, but it was very expensive and would be out of pocket. Apparently, the current FDA approval (which is needed for insurance to cover it) for it requires that you meet 2 of these 3 criteria...Gleason of 8 or higher and/or 3 or more bone metastases and/or visceral metastasis.

Best wishes to your father. He is fortunate to have you as an advocate and researcher.

[larry_dammit]

Stage 4 August of 16. Doctor didn’t mess around, one week after diagnosed they started the chemo. 6 rounds with lupron and Xgeva. Then to Xtandi. Very aggressive treatment. Seems every doctor I’d different. Hope this helps