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Advanced Prostate Cancer
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Xtandi and Increasing PSA

My father has Been on Xtandi, since September 20 2017. (3.5mo) his PSA is going up and his last reading was today 14. Sept 4.1, 6.44 and now 14!! I guess it’s not working and his cancer is not responding to it. Anyone else have this happen? What did your oncologist do? Take you off, or continue to try if it’s not working because maybe it needs more time to work? This is the highest it’s ever been since he has a radical prostatectomy in 2014..

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Had he taken Zytiga first?

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No because of the combination of steroid he went with Xtandi first

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We cant get Xtandi in Australia under PBS until you have failed chemo. So when my PSA reached 21 indicating castrate resistance has been reached my doc put me on Cosodex which is an AR blocker like Xtandi albeit less effective. This only enraged the cancer and PSA was 41 just 4 weeks later. So yes I had a similar experience to yor dad. Oncologist took me off cosodex and started chemo immediately. First dose yesterday. I am still on Zolodex even though it doesnt appear to be doing anything.

Please let us know which way you go next and good luck to you and your Dad.

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Thank you, he had the C-11 PET scan yesterday. We will be going in for results on Jan2. I am frightened but praying that it hasn’t spread. I am worried because i know they push chemo and that might be the only option next for him. He is 78 and doesn’t want to do chemo because he is worried about loosing feeling to fingers toes taste smell etc.. and there’s also the quality of life factor.

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My husband had CRPC. PSA was 19 when he started Xtandi. 16 four weeks later, 32 four weeks after that and 64 in another four weeks. Another 4 weeks - 200+. By then he was in ICU with horrific pain & Oncologist told me they would make him comfortable. I lost him 24 hours later. Don’t know why Dr didn’t take him off Xtandi when he started doubling. Wish now I had been more insistent. Hope someone else can learn from this. Best to you and your Dad!

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I am so sorry this is what i fear.. since it’s the holiday i can’t get ahold of anyone. Tomorrow we are going for scan results and hopefully Dr. Kwon at Mayo will guide us.

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If you follow most of the posts and writings here---this has been discussed, and the blame for PSA failure is usually the mutant AR-V7 gene splice. Usually this means that Zytiga may not work also--though there are some cases that it does. Right now appears IMO, that time and money has been lost, watching PSA risings. Usually the next protocol would be a course of Chemo. Sometimes, about 30%, when finished with the chemo--- the AR-V7 has been turned off so to speak---and Xtandi will work, or work again. Recently it has been shown that using Rapid Cycling Testosterone at high doses[400 mg injections], will in half the men reduce the PSA greater than 50%. When these men were finished cycling Testosterone, Xtandi, and Zytiga began to work again.

I am not a Doctor---but your Oncologist should be up to speed on protocols going forward. Press the issue.

Nalakrats

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Thank you, I am worried.. afraid.. and I don’t know with his PSA rising and double time is 4 weeks. His Oncologist moves to city of hope and so he hasn’t seen her since October. I don’t understand much about the AR-V7. I will further my understanding. I remember asking his oncologist about it and she said to try using it Xtandi and most times if it is effective then PSA decreases. But his PSA has been increasing and doubling since he has been on Xtandi ...

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I just want him to stop taking it. I know PSA is just 1 number but has anyone had this experience? Has anyone ever had PSA increase and Mets decrease? My father got nothing from Xtandi- he has been on it for 3 months and only his PSA has been going up? Could it be that Cells are dying? What’s the chances??

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Probably the Gene Splice Variant AR-V7 is in the turned on position--just a guess!

Nalakrats

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I need to read up more on this tonight since we are seeing doctor tomorrow...

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Good!

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Hi Nalakrats

This is Roland.

I would like your help.

Have your tumour also affected your bladder.

The current events on my treatment.

I have recovered from some weakness/discomfort yo body and bone spine 2 days ago. Then the last 40 hours I encounter bleeding from blood in my urine.

If my prognosis is accurate this is caused by cancer cells being starved to death as I have a very large tumour in my bladder.

I have stopped all medication but continue to hold high Urine and Saliva PH as I wants to maintain this for a few days.

This morning I had a full blood test done. Reports will be in 3 days.

I had also included s CT scan of pelvic and Abdomen and report will be tomorrow 10 am Sydney time.

What do you think in regards to the blood in urine?

Roland

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I do not have a good feeling about this. I am not a Doctor---but your guess may be right.

Nalakrats

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Hi Nalakrats

Thanks for your reply.

I hope I don't put myself in hospital again.

We shall see.

The CT scan tomorrow is crucial,

Thanks again for your friendly reply.

Roland

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I hope it's being taken with lupron or degarilix... Something along those lines. If not Xtandi or Zytiga don't work long.

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Results- nodes enlarging, few more new spots. Stopping Xtandi since it failed. Highly suspicious of neuroendocrine Prostate CA. Recommended chemo carboplatin and tax- i forgot the other one.. what are your recommendations.. any very good medical oncologist in Los Angeles

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Might want to try Compassionate Oncology---Dr. Lieberman---you can look it up. He uses other therapies. The Combination Chemo--you mentioned is typical to be used ---with Neuroendrocrine Pca.

Nalakrats

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I will look into it. Many of these facilities don’t accept all Medicare/medical. We were interested in Mark Shultz but he also doesn’t take our insurance

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I think Nalakrat's reply has some very good points that can help you to deal with your dad's present situation. Some people do this test to find out whether their PCa has AR-V7 mutations even before starting treatment because if present, neither Zytiga nor Xtandi will work and you will be just wasting lot of money since both these treatments are very expensive. Whether you do the test or not chemo is likely to be the next option for your dad. Though there has been a failure in hormone therapy, using it in combination with chemo may produce synergistic results rather than using chemo as a monotherapy. You can prepare him to avoid the side effects you have mentioned such as peripheral neuropathy ( hand fingers and feet ) by using ice and the mouth sores/taste by sucking on small ice cubes during the infusions. For all known side effects there are remedies. Only thing you must know them well in time and get ready. Most of the medical professionals are not worried about our problems. The other treatment Nalakrats has suggested is also gaining more and more recognition at present - injecting high doses of Testosterone alternately. This is popularly known as BAT - Bipolar Androgen Therapy. This is a kind of a shock treatment given to PCa cells and the qualified patients are mCRPC cases. There can be drastic drop in PSA in some cases and may even reach the undetectable level. However it may take some more time to widen its usage. There is yet another novel treatment for mCRPC which is called Lu-177 PSMA. It is a systemic ( whole body ) treatment for PCa in the mCRPC stage, using a radioisotope/pharmaceutical called Lutatium-177. BAT as well as Lu-177 are not freely available yet as treatment for advanced PCa unless you go through the proper channels but they are the latest.

Wishing you and your dad a Happy New Year

Sisira

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Good Morning Daddysdaughter,

First, thanks for looking after your Dad--in this fight, you need family and friends!

Check my bio for treatments, as I have had almost every drug, radiation, and now chemo.

Zytiga/Prednisone may be a next step, but if he has failed Xtandi already, he will not get much of a ride from Zytiga. I am surprised that Xtandi failed so soon, as I got 12 months from it even after Zytiga.

Is his testosterone being suppressed by Lupron, Trelstar, or one of its cousins? His T must be suppressed no matter what next step he takes.

Docetaxel chemo dosage can be reduced and frequency increased for a more elderly patient to minimize side effects. Neuropathy is not a given. I have completed 5 cycles of Docetaxel/Carboplatin combo and ice my hands and feet during infusions to minimize neuropathy risk. Med Onc also has recommended daily oral 100mg B6 to mitigate neuropathy.

Bottom line, your Dad is the patient and has to decide how to proceed, but make sure that he is fully informed when he makes his decisions, and then, never look back.

Best wishes. Never Give In.

Mark, Atlanta

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He has been on Lupron 3mo and had radiation after his Radical Prostatectomy

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What is his testosterone level?

Mark

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<7.0 it has always responded to Lupron

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Lupron 2.5 years on a 3 month depot

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Sounds like Docetaxel chemo is his next option. Smaller dose, every 2 weeks instead of 3 weeks to minimize SEs.

Mark

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He is still taking full dose Xtandi till he sees his MO in Los Angeles Jan 15th. We are also awaiting C-11 PRT results on Jan 2nd. I wish i tell him to stop taking it but i am not a doctor to make that decision

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I've been thru Zytiga (15 months) then Xtandi (4 months). Both initially reduced my psa but then it started rising. Now on chemo (docetaxel) every three weeks for 10 cycles. just finished #6 and am taking a break. My SE have been general fatigue, numbness in my toes, darkening of toe and finger nails, loss of hair. My psa went down quickly then has leveled off at 10. Vandy69 is right about the smaller dose and shorter frequency to reduce SE. I was scared about the chemo but has proven to be manageable. Each of us makes our decisions that balance positive effects of the meds against the possible negative side effects. Your dad can try something and then either stop or manage the effects. I know that the fear of the side effect can be worse than actually dealing with it. According to my doc the neuropathy will go away over a period of weeks. Your dad can experiment with chemo to see how it goes knowing that he can always stop or suspend the treatments. Good luck and keep us posted.

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