How do you know if Xtandi has stopped working?

[Cheerr]

My dad is on Xtandi for the last 8 months. Last 2 months haven’t been great - increase in pains / urinary retention etc

Now blood reports show his PSA increased from 0.03 to 0.04 and ALP from 173 to 281

The doc says the reports are normal and to switch from Zometa to Xgeva. (To help escape the painful side effects of zometa)

I know the 0.01 increase in PSA is insignificant but I wonder if increase in pains and rise in PSA and ALP all together mean that Xtandi is losing its effect on the cancer ?

P.S:

He is currently on Xtandi, Lupron, Zometa, Rapaflo and painkillers.

[Hidden]

"How do you know if Xtandi has stopped working?"

As with all treatments, if there is progression as seen with imaging, then it is becoming ineffective.

Have you had a biospy to look at your cancer for mutations, IHC etc?

[Cheerr in reply to Hidden]

1) Thanks Gregg. As you know usually doctors don’t act on it unless the PSA is rising.

2) He had a biopsy/IHC two years on diagnosis. Which showed adenocarcinoma and nothing else that was significant back then.

3) He had recently done a Pelvic MRI and unusual / new activity was not discovered there. Not sure if that’s enough to determine since he does have extensive bone mets.

[Hidden in reply to Cheerr]

The reason I suggested the IHC and genetic sequencing is because his PSA is still very low for a rising, out-of-range ALP and increase in pain symptoms.

Prostate cancer can mutate into forms that have low PSA and that could effect the treatments. That can happen as a result of effective treatment with anti-androgens like Xtandi.

How long ago was the imaging and did they look specifically at the areas where he is having increased pain? I'd want to know why the ALP is high and going up. These are things to discuss with his doctor.

[Cheerr in reply to Hidden]

MRI was done a month ago. It was taken specifically because he has new/increased pain in that area. Doc wanted to check for any skeleton related events. But the report showed nothing new or abnormal.

Yes we’ll be meeting with the MO this week and ask if new scans or tests are needed.

[jhrocket]

Hi calcium levels.....sounds like alot of calcium is leaching out of the bones from ADT. MayI recommend vitamin K2, the MK-4 version of it. It builds bone including hip and slows PSA

doubling time. Dosage 15mg 3 times /day.............used for osteoporosis in Japan, a prescription there. It should be used while your using ADP.....about 40 -$50.00/ MONTH

or use Pueraria Mirifca the most potent phytoestrogen on earth. Stops bone reabsorption

in cortical bone but not hip......may help one feel better from ADP: puerariamirificabuteasuperb...

[Cheerr in reply to jhrocket]

Hi, do you mean high calcium levels are being leached out so the ALP numbers can go up??

Thanks I shall check his calcium levels and ask for K2 prescription

[jhrocket in reply to Cheerr]

Your serum calcium and phosphorus are probably higher. In America you do not need a prescription for Vitamin K2.......I would use the the MK-4 VERSION 15 MG 3 TIMES/DAY. I have also read that it slow the psa doublling time. Potent phytoestrogens may make men feel better on ADP....HIGH FLASHES ETC. but I can only speculate Its work for women.. I doubt that most MD'S know K2

puerariamirificabuteasuperb...

[Thompsonk]

Your loved one unfortunately, appears to be in more serious situation than I , and only reason I say that, understand please, is amount of various meds he is on. Far and away beyond me. If , it were I, and I certainly do not know circumstances or exact position he is in, at this point, if the answers you are getting from his current doctor, and seems that way, raise concerns for you and him, I would be the first the seek more opinions. Yes, it can be a pain, but its a life and as importantly, quality of life. Get your questions answered and move on. Wish you the best.

[Cheerr in reply to Thompsonk]

Hi thank you so much! We met the urologist and another doc.

But time to meet the Medical oncologist this week. Hope to get answers.

And you’re absolutely right, we are entitled to get the answers for problems we face.

[Thompsonk in reply to Cheerr]

Good for you folks, and hope you get the correct answers. That is of utmost importance. Be well, God Bless

[rba092075]

I had no problems with Xgeva, but after my bone density scans were negative and I switched to estradiol patches , which are easier on bones than traditional ADT, I stopped taking Xgeva.

[Hidden in reply to rba092075]

Bravo👏

[Hidden]

I’m sorry that he’s in that pain . It’s a rough and bumpy road ? 🙏

[Cheerr in reply to Hidden]

Hi Steve, his latest scans show progression so we are in midst of deciding the next treatment. Hopefully the next treatment will knock the pain down soon.