HealingWell
Search Close Search
☰

Xtandi - while hormone sensitive?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/2/2015 1:31 AM (GMT 0)
Has anyone been on early Xtandi, meaning while still hormone sensitive, pre chemo, and pre CRPC?
Posted 11/2/2015 1:41 PM (GMT 0)
Yes. I am now on Degarelix and Xtandi as substitutes for Zoladex and bicalutimide. Psa has dropped in a similar manner. I can no longer compare response and off treatment length to previous cycles since the change of drugs means a new standard is in place. I should not expect to return to Zoladex. My oncologist says that these newer drugs are proven to be better and he must have a strong reason NOT to use them. Also the differing method of action means that it may cut off patterns of mutation that may have arisen on Z and B. Also he says that when I resume my off period some time next Spring that he anticipates my off period will be longer than otherwise would after Z and B. Not explained if this is a result of longer time for T recovery or for other reason(s).
I have chosen to have Degarelix every 35-36 days just to cut down on the visits to the office. 36 days means 10 times a year rather than 12 @ 30 day intervals. T stays well suppressed nonetheless.
Posted 11/3/2015 1:20 AM (GMT 0)
My dad was on Xtandi, while hormone sensitive. He was on a Lupron+Casodex regimen, and the Casodex was switched to Xtandi.

F18 PET/CT scan showed bone mets, so the oncologist decided it was best to switch to Xtandi, given the greater-than-anticipated disease burden and also the slowing velocity of PSA decline. Basically, he said there is no point in waiting for CRPC to set it, before using the new hormonal agents. They'll be more effective in his case, the sooner he took them.

Dad did Xtandi for 4 months (with continuous PSA declines) and then had to stop it. He was one of the few unlucky ones to experience severe side effects (total loss of appetite, dangerous spikes blood pressure and constant debilitating nausea while attempting to eat and drink). But, it definitely did help in his fight against PC. Now, he's switched to Zytiga, hoping to reach <0.0.01 and a much deserved vacation from HT.

Arthur.
Posted 11/3/2015 1:37 AM (GMT 0)
My dad was on zytiga for a year = it was great, lowered psa, and kept bone mets on stand-by. Then pain increased and psa rose again. decided to switch to xtandi. it has been 2 months - nausea, diarreah, anxiety, weakness... i am going to call dr tomorrow ... how long should he have to endure these side effects... also, psa did not decline yet... anybody else on xtandi = do these side effects diminish with time
Posted 11/3/2015 1:57 AM (GMT 0)
Hi mydadismyhero,

We were told that the effectiveness of Xtandi should be evaluated after the 3-month mark. PSA response may go down, even after not moving much at the 2-month mark. If you dad can stand the side effects, it's definitely worth taking the drug for another month.

However, if his symptoms are severe (he can't hold food down, has visual hallucinations, etc.), then his doctor should know about it immediately, so other drugs can be introduced in place of Xtandi.

Or, if Xtandi seems to be having an effect. perhaps the dosage can be reduced (reducing the symptoms).

In addition to the PSA tests, it might be also useful to run a scan and see if his bone mets have improved under Xtandi (even if his PSA has not declined yet).
Posted 11/3/2015 2:02 AM (GMT 0)
Arthur, your reply means so much to me... we will keep going for a few more weeks... his appointment is nov 19.. i will be his cheerleader full strength until then and keep the faith....his anxiety has spiralled... i have never seen him like this.... depressed too.... thank you for the push
Posted 11/3/2015 2:17 AM (GMT 0)
Missing from the above posts are how these drugs are paid for..Xtandi is not cheap and insurance companies follow strict guidelines before they will pay for it and other "advanced" treatments..I know my own oncologist must follow well defined guidelines in order to have medical insurance pay for these advanced treatments..Just getting an f-18 scan required a carefully worded pre-approval request...
Posted 11/3/2015 2:21 AM (GMT 0)
That is true. Xtandi's manufacturer has a Patient Access Program, where patients can apply for financial aid. Carefully worded applications get approved in such circumstances, similar to what's needed for those f-18 scans.
Posted 11/3/2015 1:42 PM (GMT 0)
Hey Jerry,

I started seeing Dr. Myers in July, he switched me from Casodex to Xtandi while I am still hormone sensitive. I also started Chemo in late August while still hormone sensitive although I was diagnosed back in March 2014 - finally gave in to Chaarted results. BCBS had no problem paying for Xtandi and I also use a program provided by Xtandi that picks up the cost of the co pay. So far so good, my PSA is the lowest it's been since DX, Myers feels it is likely the combination of the chemo, the Xtandi and the cocktail of all the other drugs and supplements that I am on. SE's are fatigue and weakness and difficulty in concentration, hard to pin down what to attribute these to given the number of meds that I'm using to fight the fight. I'll get scans before the end of the year to see where we stand after chemo and addition of Xtandi. On we go...

Ed
✚ New Topic ✚ Reply