Gatenby's Adaptive Therapy

[rpol]

See the recent post Excellent Article. This Wired article was pointed out to me a few weeks ago. I read it with huge interest, as it used exactly the stage I am at for adaptive therapy trials (aberaterone started 5 months ago), traced the original Nature Communications article, only published last October

nature.com/articles/s41467-...

and immediately contacted my oncologist to discuss intermittent dosing for me. We met a few days ago, and what she said shocked me. Be aware I am in England, so this is the NHS response. In a country where your insurance company is paying, you might get a more helpful response.

I was told in no uncertain terms that this was a small trial, as indeed it is, and numerous similarly encouraging articles are published each year, which usually turn out not to be significant once a full scale proper trial is done. The NHS (NICE I guess) had confirmed to her that they would not contemplate the intermittent use of aberaterone until large scale blind etc etc trials had been done. I remonstrated that nothing would be lost by a trial on me, no new drug was involved, money would be saved, etc but she was adamant. Indeed, she said, if I deviated from the treatment (i.e. by stopping taking the pills for a while), then she would be unable to continue prescribing aberaterone. This shocked me.

I might have remonstrated further, but saw it was a losing battle, and in any case I think it is too late for me. After 5 months on ab all ab-sensitive cells have already been killed, and my PSA nadir was 22 after 8 weeks of ab, and has crept up ever since, 24, 28, 34 at 4 week intervals. Hopefully in the USA doctors, encouraged by insurance companies, have the freedom to try adaptive therapy and will effectively build up a large trial by so doing.

Finally, within weeks of starting on ab, I felt hugely better. My PSA had dropped from 600 (yes six hundred) to 43, then 22 after 4 and 8 weeks, I no longer needed to lie down every afternoon, my weight had recovered (due to prednisolone I was told) and I am getting things done. I still feel great, so was horrified when my onc added that she would take CT and bone scans next time I see her, and if either shows progress of PCa, then she will stop ab, as it is no longer effective. I told her that I would be very upset if she did that while I was still feeling so well, and to my mind clearly benefitting still from ab.

Any advice about what more I can say or do, particularly in the NHS system?

[Magnus1964]

Has your doctor mentioned casodex or xtandi as alternatives if abiraterone?

[rpol in reply to Magnus1964]

xtandi ruled out if aberaterone/zytiga already used.

Already had casodex

[j-o-h-n]

Ask her if she has a husband, and if she answer Yes.... then get a hold of him and kick HIM in the balls...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/14/2019 6:17 PM DST

[CrocodileShoes]

Find a different oncologist. I'm in Leeds and mine knows that I have tried all sorts of different strategies, including unapproved ones. He fully supports me. It's your body, your disease. Find one that that works WITH you!

[BrentW]

I am always wary when somebody tells me of an "excellent" or "interesting" article. Perhaps it is my background in academia that makes me wary. I find that use of such adjectives frequently means that the article fits the rebelliously optimistic or desperate perspective of the reader. They often reflect a late-stage hope that something, anything, will work. I wonder: Where are you? Not there yet, I hope.

I too am in the UK, being treated by the NHS with aberaterone. I was diagnosed in 2004 (while working in the developing world), and have been through brachytherapy, salvage RP, DES, androcur, casodex and lupron. I have had ample time to try all manner of adjunct therapies about which I read in "excellent" articles recommended to me. I have lost count of the supposedly curative concoctions: vitamin D, soursop, curcumin (which I still take), raishi and turkey-tail mushrooms, serrapeptase, scotch bonnet peppers, pomegranate juice . . . the list goes on. Perhaps they have helped for a while as I took them -- after all, I am still here after 14 years. But I doubt it, as my PSA has shown negligible impact.

At day's end, I have to rely on the experience and guidance of my oncologist, feeling secure that she has a team of other oncologists with whom to consult. It feels far different from the one-man-band who for 12 years treated me in the Caribbean. I feel much more secure and cared for here.

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

"the list goes on. . ." and the duct tape....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/15/2019 6:01 PM DST (Uncle Sam's Birthday)

[monte1111 in reply to BrentW]

Well said. Where are you? Not there yet, I hope. We all hope that. Enjoy.

[TommyTV]

Are you in the STAMPEDE trial? If so, changing your dosage etc. would negate your participation in the trial as baseline parameters had changed, and your outcome has no measurable meaning in the trial.

If, as your oncologist suspects, you have become CR to Abiraterone, there’s no point in taking it, and an alternative must be used.

My PSA was 571, started Ab and Prednisone and it dropped to immeasurable within 12 weeks, where it’s stayed for the last seven and a half years.

[rpol in reply to TommyTV]

lucky man!

[TommyTV in reply to rpol]

I know. Who knows why? Others fail within months.