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Posted 2/24/2012 2:53 PM (GMT 0)
Wed 22 Feb I had my latest Zometa infusion and also the PSA test. My previous PSA was done on 25 Jan and was 77 (up from the 46.4 done on 31 Oct). The VA protocols are only to do PSA test 30 days apart.

Major disappointment - PSA 99.

Course of action now is Pet bone and CT scan ( bone scan - here comes the stuff they are going to inject into me in a container labeled caution, body scan - here drink this barium stuff. First openings are 2/29 for the PET and 3/6 for the CT.) After we have the results of those than will decide on next treatments

One would think that as the PSA went from 1447 to below 100 the bone scan should show diminished activity. Actually I'm not sure on that and its just wishful thinking on my part.

Given the PCA in the bone is equal to or greater than what was last July - Possibles in my future; abiraterone(zytiga) , docetaxel (taxotere), MDV-3100.

From what I understand the standard medical progression is to start with docetaxel (taxotere) and if that does not do the job than move to abiraterone(zytiga).

However I also understand that I can start with abiraterone(zytiga) - which may have a higher positive result percentage and is easier on the body overall.

Than there is Provenge, however that may not be in the VA bag of cures yet.

What are thoughts on
1. Start with docetaxel (taxotere)
2. Start with abiraterone(zytiga)

Thanks all
Posted 2/24/2012 3:19 PM (GMT 0)
I don't have any useful info to give you but I am sure your numbers are a concern and very disappointing to you. I will send good healing thoughts your way.

Susan
Posted 2/24/2012 4:32 PM (GMT 0)
bud,

i am so very sorry its moving the wrong way = up.

hoping they find something else that will move it back down

i have a vested interest in the taxotere. post what you find out about it, i may be on it as early as summer this year.

david
Posted 2/24/2012 5:01 PM (GMT 0)
Hey Bud, I thought that 3 consecutive progressions of PSA above the nadir are needed in order to label it "refractory" and move onto the next medication. I thought I read this somewhere, maybe you want to check with your doctor. Also, I question whether it is time for those options you are quoting: taxotere and zytiga. There are other "older" options like ketokonazole, or DES, or even switching (for example) from Zoladex to Eligard (if your testosterone level is not optimally lowered, have they measured your T levels?). But I am a bit surprised that you would become refractory after a few months, I really think you need to give it some more time, sounds unusual to me. Don´t despair just yet, there are a lot more options, and even more combinations. What works for one may not for another, just have to find the medication that will work for you. It´s out there. Let us know how the scans go!
Posted 2/24/2012 6:38 PM (GMT 0)
Hello Bud,
Sorry to hear your current PSA result. Have you had a testosterone level test? That should be a first priority since it defines androgen resistance. Depending on results you might make a better treatment decision.

If PSA is not at castrate level:
Consider switching from Lupron to something like Trelstar. Keep measuring T until is driven to castrate level, the lower the better. Consider switching to nilutamide instead of Casodex. Consider low dose Keto/hydrocortisone. Be sure to stay on an LHRH (Lupron, Trelstar) rather than stop it because it is not working.

If PSA is at castrate level:
Consider chemotherapy to attack androgen-independent tumor cells.
Preferably a q21 Taxotere/prednisone protocol
Bud, stay positive because although you have high-risk metastatic disease you are fortunate to have several options in the research pipeline as mentioned in other posts today. We wish the very best to you and family.

RalphV
Posted 2/24/2012 7:44 PM (GMT 0)
Bud,
Lots of good things mentioned here. Current clinic trials you may want to investigate as well. (MDV3100, Ippilimumab, PROSTVAC-D, etc.) Also, the VA has access to Provenge through referral. My doc administers it for the VA here in Vegas.

Ralph's suggestion for Taxotere is also starting to appear as a near option. Your PSA is in a hurry and the sooner the better you start adding things other than HT.

Good luck getting this moving forward, I know the challenges that other members have had with the VA, but they do have access to the latest options.

Tony
Posted 2/24/2012 8:06 PM (GMT 0)
Bummer, Bud.

Sorry I can't give you any advice, you're way above my pay grade here, but you got a gang of guys way sharper than me to advise you, anyways.

What I can do is cheer on and that I do. I'll be watching for further reports with interest.

Sheldon AKA Sleepless
Posted 2/24/2012 8:11 PM (GMT 0)
Thanks all

Why go to chemo - docetaxel (taxotere) when can use abiraterone(zytiga) as a next step? Is not the taxotere harder on ones body and the success rate for abiraterone is actually higher ( I think)

MDV3100 was mentioned by my Doc

The way I understood - if the Scans showed improvement than could stay on some HT and have MDV3100 as part of that.

So far I think the VA has done a awesome job! I'm really impressed.

Bud

If the Scans are not positive (for me) - than its docetaxel (taxotere) or abiraterone(zytiga)

I did have my T tested it was 23
Posted 2/24/2012 8:27 PM (GMT 0)
Some doc's would like to see the T levels below 20, but that's not always possible.

Looking at your numbers in your signature, your doubling time is about 4 months. This is fast moving and you might want to get the chemotherapy earlier rather than later as many trials require previous stints on chemotherapy. Also, from what I understand Provenge is still a logical choice since it is immunotherapy and any prednisone anywhere will affect negatively your immune system.

How's that for confusing?

If you send me your mailing address I will send you the Dendreon DVD for patients. I just did so for Todd and you should at least consider the information...

Tony
Posted 2/24/2012 10:26 PM (GMT 0)
Bud,
Sorry to hear your numbers are not as you wish.

The only thing I can add is that my husband just finished 2 rounds of taxotere/carboplatin and aside from losing his hair after three weeks, he was not sick at all. The first two days after the infusion, he was pumped up because of the steroid included, and on day three he would crash. Day 4 was back at work with fatigue. His exact words "Chemo was a cakewalk compared to HT." But, everyone is different.

We're not so sure they didn't give him a low dose if for nothing else, but to make him eligible for other drugs that require it as a prerequisite as Tony mentioned.

Husband was also due for Zytiga first, then at the last minute they did chemo instead. I suspect done so to keep it in order of protocol.

Keeping you in thoughts...
Posted 2/24/2012 10:30 PM (GMT 0)
Hi Bud,
Zytiga was FDA approved for androgen resistant patients who had failed chemo. I know there was a trial for pre-chemo patients, but I do not think it has been FDA approved for such cases yet. That is why I felt taxotere/prednisone was in order.

If you have access to a MDV-3100 trial, go for it because it should have the least side effects and potentially the best results. Be well and wish you the best outcome.

RalphV
Posted 2/25/2012 12:22 PM (GMT 0)
Have you research the triple hormon blockage this may help and also to check DHT levels, i have read a lot for my father i will send some of my research on e-mail to you. I have also consulted Dr. Strum and he has made some good remarks for my father.

All the best
Bianca
Posted 2/25/2012 12:30 PM (GMT 0)
My father is on Zytiga for more then a month now his PSA has gone form 20.8 when he started to 1.1 after one month of use.

Bianca
Posted 2/25/2012 10:56 PM (GMT 0)
Bud, I am so sorry to hear this news as I have been following your journey.  There is a good response and recomendations here - I hope you will find them helpful.  Good luck in your decision making!

God bless,

Aimzee

Posted 2/27/2012 3:04 PM (GMT 0)
All - thanks for the support and all the shared information.

I have my Doctor Son-in-law involved also and he is checking with some of his coworkers to see what they would recommend. No census yet.

I'm trying to get my arms around stuff and determine what is the best approach.

Will keep everyone advised - the next biggie is the bone scan on 2/29. My wishful thinking is since the PSA went from 1447 to below 100 the bone scan has to show a improvement.
Will see.

I AM going to kick this prostate cancer crap a**.

Bud
Posted 2/27/2012 3:23 PM (GMT 0)
raddad  keep up the fight

my docs are trying to get me on provenge  before  chemo.$300000 procedure so my insurance will probably deny me

my docs feel that provenge is promising. i don't know too much about it.

i'm 64 and in my 15th year of locally advanced pc. psa numbers are misleading.  some patients with great numbers do badly, while some patients will bad numbers do well.

i'll let you know about provenge if i'm on it.

also there is a stage 11 trial with high doses of metafurin(spelling ?)  which is used for diabetes. the feeling is a reduction in sugar helps pc  and that it also heps pc biologically.

god bless   carrig from boston

 

Posted 2/28/2012 5:35 PM (GMT 0)
Raddad,

Sounds like you are in great company. Just want to let you know that you are in my thoughts and prayers, and I look forward to your future updates!
Posted 3/2/2012 4:31 PM (GMT 0)
All

Just had my bone scan (inject you with radioactive stuff and see how much you glow) this past Wednesday. Took a day for my Oncology Doc to get the results, I talked to him yesterday on the phone.

Here is where I am for now.

1. The bone scan shows a lot of improvement from the first done in July 2011 when the PSA was 1474 (Note I was saying the PSA was 1447 – I was off a bit)
2. But we do not know if the bone scan results would have been better in Oct 2011 when the PSA was 46.4
3. We talked about now what to do. – He wants to add bicalutamide (Casodex) back. So Zometa and Eligard + Casodex.
4. Check PSA again on 21 March (my next Zometa date)
5. Get the body scan –
6. I asked about Provenge – no not FDA approved yet.
7. Asked about MDV-3100 – not approved yet but getting close. My Doc likes this and wants to get me on it as soon as he can.
8. IF next step – will gauge after PSA on 21 March - it would probably be Abiraterone (zytiga) and NOT chemo.

I asked why not go with the Abiraterone (zytiga) now - he wants to hold off and see what the Casodex will do.

In retrospect I probably should have had the bone scan right after the first PSA rise. But I did not so no looking back only forward!

I /am/ going to kick these prostate cancer critters in the a**!

Bud
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