So Much for Zytiga

[bglendi53]

Began Zytiga July 1st after my MO took me off Erleada and Xofigo ( only three months on the Xofigo ). The First PSA showed a drop from my previous number of 33 on June 9th, to 24 on July 29th. Awesome, finally one of these drugs is trending my PSA down instead of up.

Yesterday I had another PSA test and number quadrupled to 92.23. I was expecting another lower number and was just shocked when I saw this a couple hours after meeting with my CNP. They scheduled my blood work an hour before my appointment and the results were not available during the appointment.

I'm kind of tired of this throw something at the dart board to see if anything sticks approach.

[Kaliber]

yea I can see how disappointing that is …. I think all of us would feel the same. Still … you aren’t out of darts yet … that’s a good thing. The V.A. Sent my friend Mark ( Urang on this group ) home ( after a 22year heroic battle ) , no more treatments possible. just home hospice . For me that would be even more awful. Still, Mark lasted three more comfortable years puttering around his garden and enjoying his hobbies.

Just say’in ❤️❤️❤️

[EdBacon]

I don't understand why doctors think switching from one second-line AR drug to another will work when the evidence clearly shows it doesn't in most cases (roughly 80%).

Here are some doctor's opinions on the subject:

researchtopractice.com/COCP...

I was surprised when my doctor suggested this. I didn't agree but did it anyway. Did not work. And, I just talked to someone I know locally today with the same thing. He was on Erleada,. It failed, His doctor put him on Xtandi. PSA up from 45 to 90 in 6 weeks. There are some lucky guys, but for the most part, once you are resistant to one you are resistant to all.

Once you have a second-line AR drug fail it makes the most sense to do chemotherapy before trying another. Here's a trial which proved this:

nejm.org/doi/full/10.1056/n...

[Tall_Allen]

Did you ever figure out why Xofigo was stopped? The dose of docetaxel was reduced when it was used in a combo in this trial:

ejcancer.com/article/S0959-...

The combo is still available in these clinical trials:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

[bglendi53 in reply to Tall_Allen]

I never recieved a specific reason other than I had more bones mets after 3 months of Xofigo than i did before I started.

[EdBacon in reply to bglendi53]

That's generally a good reason.

[CAMPSOUPS in reply to bglendi53]

Well yes that does seem to clear that up. Otherwise I was going to say it is common to not have a PSA decrease during Xofigo.

[Grumpyswife]

Switching from Xtandi to abiraterone seemed to work for a year or so for my husband. We were trying to buy time until other options were available. Initially had doubts but we’re pleasantly surprised.

[bglendi53 in reply to Grumpyswife]

I had high hopes since my PSA dropped the first month, but now this.

[Kenn2017]

After lupron injections and taking Xtandi, and still a rise in PSA I decided on my own to start taking fenbenzadole found in a dog medicine. My PSA dropped by more than 1/2 in two weeks and is still declining. I had tried other alternative supplements with no discernible results so now .... ruf ruf. And after three months the results of a lower psa are still holding.😁

[bglendi53 in reply to Kenn2017]

Is that a prescription version? Did your MO approve of that?

[Kenn2017 in reply to bglendi53]

No. and I do not know if you could get a prescription for it. and No I did not tell my MO as they are locked into a bubble which they cannot beyond. I have encountered resistance to anything not approved by FDA and while I understand this, it is my life I wish to improve upon.

[dhccpa in reply to Kenn2017]

I've been using since 2/2020, also Lupron since 11/2018. Still stable with low PSA but not sure what role fenben is playing.

[Kenn2017 in reply to dhccpa]

I stopped for a couple of weeks while still on Xtandi and lupron and my PSA began to elevate. Went back on fedben and my numbers dropped.

[Purple-Bike in reply to Kenn2017]

I had two cancer markers simultaneously going up. Right after started fenben /JTP plus something called GlyNAC. Both markers went down to the old, safe level a month later. Had been thinking it was Glynac if it wasn't a coincidence but who knows.... There is no science behind fenben. Just these fantastic testemonials plus some Stanford researchers making three detailed case studies of amazing turnarounds after JTP. No side effects so I guess I'm stuck with continuing it.

[Kenn2017 in reply to Purple-Bike]

I have used those ingredients GlyNAC and did not notice a difference but that is me. What is JTP???? However, if you are using a combination which is not detrimental to your health and is working for you, I would not stop. Since we are all different, what works well for one may not work well for others. I am looking at BAT which sounds interesting but I do not know how my MO or Urologist will react to this. Am also watching what the trials with Dostarlimab will reveal. Best wishes Ken

[Purple-Bike in reply to Kenn2017]

JTP is the (in)famous Joe Tippens Protocol with fenben, CBD oil and curcumin. No science but with that simultaneous improvement of cancer markers my gut feeling is that it just may work and I don´t dare stop taking them.

Right, BAT is most interesting, if my cancer markers go up I will probably go for it. The case is building that it can be good for the hormone-sensitive too. Present the emerging evidence to your MO.

[dmt1121]

It is essential that you do as much research as possible related to your circumstances. Having a family member or friend attend your visits is also very helpful to take notes and remind you of question you may want to ask. Also, always feel free to question their decisions and probe your care team on treatment options and why they may change course.

If unsatisfied with their response, get a second opinion from a local oncologist who has very good credentials, or someone or highly respected medical center... even if travel is required (if you can afford to do so) to have them review your tests and treatment. It can reveal other avenues that may be good options or may confirm what they are doing. Either way, it helps ensure you are getting good information and a good treatment plan.

Good luck!

[bglendi53 in reply to dmt1121]

I always have questions written down, although sometimes I feel I get vague answers. Plus I'm going to the Cleveland Clinic so it doesn't get a whole lot better than that, #5 rated in the country for cancer. Thinking about going to The Mayo but that is very long trip unless I fly.

[john4803]

Don't know if it is pertinent but do you know if you have any mutations in your family history?

[bglendi53]

No one in my family has ever had prostate cancer. I actually had genetic testing to see if I have the gens normally associated with PC and I don't even have those.

[Seasid in reply to bglendi53]

could you ask for Guardant 360cdx liquid biopsy? Maybe they will find some actionable mutations? Olaparib or Keytruda could work.

[dmt1121]

Definitely a very good medical center. It sounds like asking some questions and doing more research would be well worth it, even if it temporarily puts the breaks on your treatment. You also might investigate other oncologists where you are and see if someone else is better suited for you. I changed doctors where I am within the same medical center/clinic and it was a good move.