60 days on Xtandi and PSA is rising...

[Max135]

Any help on what's next would be appreciated. 2nd line AR started a couple months ago and it has already stopped working. PSA has bumped from 2.49 to 3.81 in 30 days. Only on Enza for 60 total with PSA at 4.50 in Oct. The stuff worked but not as long as I was hoping. ...... Any comments on what my next move may be would be appreciated.

[Hidden]

How long did first line ADT work and what was your PSA nadir?

In general, short times of effectiveness with AR-based treatments are an indication to go in the direction of chemotherapy.

If it were me, I would get imaging done and not change treatments unless there is radiographic progression in addition to PSA rise. I would also get molecular testing on a tissue sample to look for treatable mutations. I would discuss with my doctor the possibility of Docetaxel chemotherapy as the next treatment.

These are things you can discuss with your doctor. Wishing the best for you.

[Max135]

Lupron worked for 22 months (low of 0.4). Thanks for your reply

Chemo was done early 6 rounds of doci...

[Hidden in reply to Max135]

That's an excellent repsonse to Lupron ADT. I would do the molecular testing with a tissue sample or CTC (liquid biopsy). You might have an AR mutation in which case trying another second-line AR treatment would likely not be effective.

Like you, I also did early chemotherapy. I'm figuring that when my second-line Zytiga stops being effective I'll probably be going back to chemotherapy.

[Max135 in reply to Hidden]

I have have both the solid biopsy and recently a liquid nothing showed up. In early Oct of this year I have a PET scan and only comment was an old bone met looked brighter on the scan.

[Hidden in reply to Max135]

If your PSA keeps going up, you could just try another second-line such as Zytiga and see what happens. I think you'd know fairly quickly if it was going to work.

[Max135 in reply to Hidden]

Thanks for your reply Gregg....

Will be checking with my medonc to see what she wants to do

[Hidden in reply to Max135]

Please let us know. Thanks.

[Max135 in reply to Hidden]

Ok.

Just now trying to stay on solid ground.

[j-o-h-n in reply to Max135]

What does you MO say after he says "good morning Max"? You're paying this guy/girl for their expertise...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/14/2019 10:37 AM EST

[Max135 in reply to j-o-h-n]

Stay the course!

[j-o-h-n in reply to Max135]

Is he talking golf or medicine?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/15/2019 2:33 PM EST

[Kevinski65]

Are u taking all 4 pills? This site doesn't like unproven methodologies but try zyflamend as an add on. It might help , if not you're not out too much.

[Max135 in reply to Kevinski65]

Kevin

Yes taking all 4 pills in the PM before bed. I have been informed that from one month to the next in the beginning you might get a rise. But to give the drug one more month. Maybe that I am ARV 7+ (seems 35 percent of guys are)... these second line drugs may not work.

[Kevinski65]

Are u taking it with lupron or digarilix ? I've been on lupron and xtandi since 2012. I'm in a clinical trial at NIH. Before they added xtandi it was just lupron. I took many supplements though before the trial. I was psa 31 at diagnosis, level M1, stage 4, Gleason 9. I'm psa .02 now and have stayed that way going on 5 years. My mets are in dormancy nothing shows on scans right now. So I'm like 8 years out. So it's lupron and xtandi. I don't know if the supplements did anything. I don't know what my genetics are. I was told I'd be gone in 3 years. Have u looked at clinical trials? Good luck 👍.

[Max135 in reply to Kevinski65]

Thanks for your story Kevin. For me Lupron 22 months then 5 months of psa rise from .04 to 4.25. Started Enza and got at drop 2.45 and the second month 3.81. Of course in my head I had this second drug working much longer. Will stay the course until one more PSA but if it rises a second time will need to make a move.

[Sxrxrnr1]

ncbi.nlm.nih.gov/pubmed/313...

Indomethacin and Niclosamide. UC Davis in Calyfornua is running trials on each to determine if either will reset resistance to 2nd generation Inhibitors.

Have you had a AR V-7 test? If positive resistance is almost assured. If negative, resistance is substantially less likely but no guarantees.

I am currently taking 2 Indomethacin capsules daily as had developed resistance to Xtandi after a successful 15 months. Now on Darolutimide with possible promising results.

Running my own trial as UC Davis turned me down...not a lot of support from my MO’s either,,,,as not SOC. What’s a man to do,,,,sign up for hospice as discussed in post above?

Oh yes,,,,they also discouraged Casodex after failing Taxotere, Cabazitaxal, Xtandi, and Lupron(immediately).

Did it anyhow,,,,PSA fell from 800 plus(PSADT of 5 weeks) to 152 in 3 weeks,,,before beginning to slowly rise ,,hence movement to Indomethacin and Darolutimide.

Signing in for Keytruda and RT(abscopal effect) very soon.

[Kevinski65 in reply to Sxrxrnr1]

Have you tried celebrex? Works well with zometa , 20% increased survival. Also , zyflamend for prostate has been studied. It's a supplement. These don't cost much. There is another supplement called motherwort. U can get it at vitamin shoppe. It interferes with signalling on all 4 lines. Get it as a liquid or herb. Put it in empty gel caps. There are many other things you could do but that's enough for now.

[Max135 in reply to Kevinski65]

Kevinski65

will have a look at both.... at the moment waiting on a few questions to be addressed by my GU guy at MDA.

thanks again...

Ken

[Max135 in reply to Sxrxrnr1]

thanks for the information Sxrxrnr1..... must admit your reply does cover a lot but I will have a look at each one of the items listed. I strongly think the support from everyone on this site has value and should be explored even if it is not SOC or more like along with SOC. these large cancer centers just do not have the time to look at or run small trials on all the stuff we are will to try. Hence they have no idea if they work.... thanks again for your comments.

Ken

[Max135 in reply to Sxrxrnr1]

Sxr...

forgot I do not at this time know the answer to the question on AR V7. if my memory is correct yes I have been tested and it was negative but want to confirm this with MDA doc today. fingers crossed.....

[docbulldog]

Will Medicare cover the AR V7 testing? Is that the molecular test that helps determine whether Xtandi or Zytaga could help? I've been on Xtandi for 27 mo now and psi is now at 4.11 so am trying to soak in as much as possible so I can determine my next route. I would guess Docet. Chemo is next. But MO is also looking at Clinical trials out of Seattle Cancer Alliance.

[Max135]

docbulldog

at the moment I am 59 so not sure about Medicare coverage....

Ken

[Sxrxrnr1 in reply to Max135]

Covered my AR-v7. Medicare with supplemental, 100 percent

[Max135]

thanks Sxrxrnr1,

looks like another set of labs is required to confirm Enza will not work for me. going to be a rough day when this information comes out since in my head I was hopeful that this drug would give me an extra year or two... if we find that it does not work because of AR-V7+ mutation than going to give Abbi a try since it blocks T - Levels even more then Lupron but with that being said the list of drugs after second line is small...

enjoy your days and have a good new year!

Max