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My husband is about to start Xtandi and Provenge ... advice? opinions?

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Posted 5/9/2015 1:05 AM (GMT 0)
Hi Everyone,
My husband finished Taxotere right before Christmas, his PSA was .076 in January, but has more than doubled every month since. He is now in double digits, not the 790 he was when his prostate cancer was discovered, but still very concerning. He is going to start Xtandi in the next week or so. I am interested in how it has worked for people on here, and what we might want to know.
We are also going to start Provenge the first of June. Anyone else do both Provenge and Xtandi at the same time? The cost of these treatments is shocking, and I am most interested in getting the best out of each treatment. I am worried that Xtandi is very taxing on the immune system, when the point of Provenge is to super boost the immune system. What am I missing?

Thanks in advance, and remember ... NO ONE FIGHTS ALONE!
Deanna
Posted 5/9/2015 1:32 AM (GMT 0)
A great combination!

Where did you hear that Xtandi "is very taxing on the immune system?" That may be true- but this is news to me. At any rate the immune boost from Provenge should more than compensate.

- Allen
Posted 5/9/2015 2:23 PM (GMT 0)
Deanna,
My husband did not have both at the same time - he was on Lupron 3 month shots.
Xtandi came later but lasted only 2.5 months. We do believe he has benefitted from Provenge even though that was not reflected in his PSA numbers. It was great for him to have a treatment that had no SE's for a change! There are others here who have had Provenge and hopefully, they'll chime in.
Best to you & your husband,
Susan

2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana Neulasta shot 24 hrs after chemo
4/17/15 2nd Jevtana Finally The Great Constipation resolved
5/08/15 3rd Jevtana
Posted 5/9/2015 5:29 PM (GMT 0)
I may have confused Zytiga, which requires a steroid to take, but I believe his doctor said that it is harder on the immune system, whereas the Provenge is building the immune system. I am really confused, only want the best treatment plan, and no one seems to know what that is. My husband's urologist said he is ready to refer him to Dr. Eric Small (San Francisco), which he says is the Guru of Prostate Cancer, and I am thinking we should have done that yesterday. We are now signed up for Xtandi and Provenge, and I have read so many mixed reviews on here.

I would like to talk to someone who did both Provenge and Xtandi at the same time.

I am always sending out positive thoughts to all fighting this battle, your stories and information inspire me to stay positive.
Posted 5/9/2015 7:14 PM (GMT 0)
Yes, you were probably confusing it with Zytiga+corticosteroid, although even there, it is a fairly low dose of prednisone. You are right that no one really knows what the best treatment plan is, or if there is even a best plan that is not individualized for the patient's genome and specific cancer phenotype - all way beyond our present knowledge. Some advocate a sequential approach, some advocate a cocktail approach. There is as yet no proof that either approach is better. But I will say that making your decision based on some anecdotes you read in here is not a very reasonable approach. You are much better off under the care of an experienced medical oncologist who has seen hundreds of such cases.

- Allen
Posted 5/9/2015 7:15 PM (GMT 0)
With Zytiga, instead pf Prednisone which can affect the immune system, I took it with 50 Mg Inspra (eplerenone).

When he does the Provenge lukaphasesis that takes 3 hours with a needle in each arm, he will not be able to get up to void. So wear elastic band sweat pants so the curses can bring out the bottle if necessary.

The reinfusion only takes 1 hour and one needle, so not an issue.

Double up on his calcium a few days before and a few days after Provenge, with TUMS.

I had no issues with Provenge and Zytiga, not sure about Xtandi.
Posted 9/3/2015 3:47 AM (GMT 0)
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Hi I have just completed my 13 cycle of both zytiga and xtandi as part of a trial out of Johns Hopkins. The previous year I went through the Provenge treatments. When starting the Zytiga and Xtandi my PSA had risen to 48.5. It is now undetectable. In addition the lymph nodes that have been involved in my cancer have all disappeared. My cancer had metastized to a rib. That tumor is shrinking and the bone around it is rebuilding.
Both meds and the Provenge are very expensive. If your husband is on Medicare they will pay for the Provenge treatment. The drug trial I am in is sponsored by Xtandi who provides their drug at no cost. I am responsible for purchasing the Zytiga. With review the prescription plans will cover 2/3 of the Zytiga. Hopkins helped me find a foundation that is picking up the balance of the Zytiga costs. The Zytiga does require the addition of prednisone to counter side effects. So for the only side effects from both has been a rise in blood pressure which is being controlled by additional melds.
Posted 9/3/2015 2:20 PM (GMT 0)
Deanna,
You got some great advice from our guru,Tall Allen and also Mr. Jim Crotty(Normar) above. I agree that with all the studies and knowledge it is still difficult to determine the right treatments for the future. I wish that I could have started Provenge, but my Doctor was not convinced about the "sequence" of treatments, and Insurance Coverage was "iffy" as Zytiga had already been recommended(both very costly for them). But Zytiga has worked exceeding well for me for now. Now I read that Taxotere may have better benefits for me if I would have been given that first. So, it Looks like your Doctor has hubby on a good treatment pathway. keep the faith, keep us posted.

CharleysS-Welcome to the forum, great to have your input, sounds like you have much experience with treatments already from that top Center, John Hopkins. Stay with us and keep us posted, please. If you could try to add your statistics line at the bottom of your signature, many might be interested in your timeline of treatments so far. Thanks and again welcome!
Dan in So Cal
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