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Posted 8/20/2013 4:19 AM (GMT 0)
I finished Provenge on 7/15 and at that time my psa was moving upward. Went off casodex and psa went up from 2.4 to 5.4 in 30 days. Went on 4 weeks triple casodex and psa went from 5.4 to 8.1, now after 3weeks of Xtandi my psa has stopped it's upward movement and is now 8. Nice to see psa not move upward. Today at my doctor visit we discussed going to 3 pills from the 4 per day. My experience with Xtandi at the 4 week point is fatigue. I've not had any other SE's but this drug makes me very tired and does affect my ability to keep up with the work at my job. It is a difficult decision after seeing the psa stop and you worry that the 3 pills wont keep things moving down. My doctor doesn't have a problem with it, as he said it's a QOL issue and they adjust the dosage when needed. I guess I'll try the lower dose for a month and see if I'm less tired and retest in a month.

Kurt

Posted 8/20/2013 4:26 AM (GMT 0)
Kurt - I am not there yet but expect to be some day.

All you can do at this point is rely on the wisdom of your doctors and those on this forum who have already travelled the road you are embarking on.

Though no 2 cases of PCa are identical, trends emerge as the number of trials increase.

Glad it finally leveled off in 8 range.

Now just a case of managing QOL issues with hit it hard and hit it often natural human tendency.

LupronJim
Posted 8/30/2013 1:03 AM (GMT 0)
Kurt,

I was away on vacation and internet connection was extremely limited, but I did catch this post and could not connect long enough to reply.

My oncologist has agreed to Provenge as soon as HT fails. I just got another rise in PSA today, but see my oncologist next week to review PSA and a bone/ct scan results. Not saying I'm ready for the next step, but if I am, what a short ride on the HT train....

I guess I'm surprised you added a treatment (Xtandi) due to your PSA rise. I thought that with Provenge a PSA response like yours is not uncommon, and you need to look for other markers for cancer progression, such as bone scans. Was Xtandi started as a precaution?

I gotta say the only thing that scares me about Provenge is the knowing whether or not it is working for your specific cancer.

Hope you are doing well and look forward to your updates, good or bad (praying for good!)

With you,
Don R
Posted 8/31/2013 1:08 AM (GMT 0)
adjust,
My father had Provenge back in Nov/Dec and PSA went down for three months, held for two, then started taking off. Xtandi is now on deck for Oct.

You are correct about the Provenge info and not knowing etc. There are a few on here that push info but actual facts are this:
1. You will feel better
2. You will need other meds when PSA rises
3. It has never been proven to do anything but the above-one of many reasons Dr's are staying away and the stocknis tanking.

Do not view it as a cure or vaccine. That will set you up fpr a downer when new meds are needed. Sure it may be doing something but dad only got 9 months and cancer is on the move after Provenge.

I would still encourage taking it, but start looking for the next med quickly and mentally know it will be needed.
Posted 8/31/2013 2:16 AM (GMT 0)
adjust,

I chose provenge as soon as my psa moved up for the third time while it was still low. I had insurance that paid for it and my Dr. and I felt like the time was now. I would like to think that as I get farther away from the treatment that it will help. My psa has been rising since before the treatment and continued until the Xtandi stopped the rise. My Dr. would have started me on Zytiga but that requires a steroid and there is a possibility that the use of a steroid that close to provenge treatment might interfere. I have been able to stay on the 4 pill dose of Xtandi and the fatigue has leveled off. In fact I'm flying to Las Vegas for some time with my daughters. My goal is to avoid chemo for as long as possible and when Xtandi fails will go onto Zytiga and even keto and who knows maybe the provenge will kick in and keep me going longer. I'm glad I did the provenge treatment so I wont find myself wishing I had.

Kurt

Posted 8/31/2013 2:26 AM (GMT 0)
Kurt,

What was your primary treatment, just HT? Any radiation?

Jerry
Posted 8/31/2013 2:36 AM (GMT 0)
Jerry,

After consulting with one onc I contacted KU Medical center and asked for an apt. with the best pca doc on staff. I really like this guy but both doctors saw no benefit for me to do radiation. Went on adt3 until failing that first line treatment.

 

Posted 8/31/2013 2:48 AM (GMT 0)
Kurt,

Got it...Just looking at all options for you...
Posted 8/31/2013 2:54 AM (GMT 0)
Kurt, for me using cassodex to bring psa down for my peace of mind was the choice I made. I would like to mention that prior to provenge I had a tumor in my lung. Since being provenged that tumor is gone. I hope it helps your peace of mind as well.
Posted 8/31/2013 3:29 PM (GMT 0)
Thanks all. Like any of the therapies for advanced PC cases, how effective they are on each individual, can vary quite significantly.

Kurt, our stats are scarily similar and not a very long ride on HT. I'm of the same opinion as you, that I want to get Provenge on board earlier in my treatments, with the hope that even if it does not seem to be "working" for me, it will help with the efficacy of following treatments. There is no doubt in my mind that Provenge is helping many with this battle, but not everybody.

I will be seeing my Onco next week to go ever the latest bone/ct/PSA test results. It will be interesting to see if he thinks there are enough signs to move on to Provenge. Knees have had pain in them over the past 3 weeks (left knee worse that right), I figured it was the HT, but got a peak at my bone scan and the technician said "is it the left knee?"; both knees had spots on them. Not sure what to think about that, or my PSA progress... at approx 3mo post HT it got to 0.8 (from 101.0) and I was happy with that; last 4mo have shown 0.2, 0.3, 0.8 and latest 1.3.

Todd, your lung tumor response and the time Provenge worked for you are both encouraging to me!
Posted 8/31/2013 11:04 PM (GMT 0)
Hello Kurt ....

   I am currently at the crossroads of deciding on moving ahead with Provenge. My Onco, as of three days ago, suggests it after viewing my very recent catscan and bonescan.

   His office is working on the financial aspect of the Provenge. They worked financial miracles a little over two months ago when I started my Xtandi.

   My SE's on Xtandi were very minimal, besides being incredibly tired - but their office does reduce the 40mg capsules from 4 down to 3 for those who have severe SE's. That is, as long as the PSA stays relatively flat.

   In my case (and you know we're all different), the Xtandi did not work for me and my PSA continued an upward move - even while taking 4 capsules daily.

   I hope the PSA status keeps relatively even for you - or reduces!

Rob

 

Posted 9/1/2013 11:47 AM (GMT 0)
Do some research on Provenge. I went stage 4 last year and had the three treatments of Provenge. The luekapherisis is very painful(cramps due to calcium depletion). The drug was a complete failure for me. There are allegations that the drug is a fraud. Google Rueters magazine- Denrdreon CEO being sued after admitting the drug is a FLOP He sold $84 million dollars of his stock the day before his admission. They supposedly gave false reports to the FDA regarding the efficacy of the drug. It is the only drug in in the pipeline of a miserably failing company. It gave me nothing but pain and false hope. Maybe someone has the technology to alter the human immune system, but Dendreon does'nt. There is a huge lawsuit agianst them for defrauding their shareholders. My wife and I lost thousands when the CEO dumped his stock. Dendreon is run by con men.
Posted 9/1/2013 1:37 PM (GMT 0)
Never Better,

Sorry for your condition and your investment losses. The Reuters article is known to many in our ranks and much of it's content has been categorically debunked by many highly credentialed professionals in the medical community since it was published last year. Dendreon does indeed harbor some profound organizational problems but I feel that most of us in this room would rather not see the baby being thrown out with the bathwater in this case. For some it has proven a very effective tool. The treatments for this disease vary widely in their success rates from patient to patient and as a consequence we avoid bashing specific doctors or drugs. Best of luck in your journey.

Jim
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