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Does anyone know much about Chemo for PCa? New higher PSA...

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Posted 11/14/2010 7:18 PM (GMT 0)
I had my latest PSA done last week, it's up to 4.9 after stopping the Casodex.

Previous one was 2.22, so it's more than doubling every 6 weeks.

Going to the cancer center tomorrow, think they'll be offering some sort of chemo but not sure I want to go that route.

My concerns are QOL, have been feeling much better off the Casodex, most of the headaches and nausea are gone, life has been much better without it.  Although the cancer may have springboarded, who knows really?

Does anyone know about the side effects/QOL on Keto (which was mentioned at last vist) or any other drugs?

Does anyone know how long or at what PSA level the 'curtain drops'?

I cannot get straight answers but our family doc told my wife that I need to get all my affairs in order.  That was done awhile ago.

Yes, Purgatory, I did want to join your PSA boycott but chickened out, don't want to miss an opportunity to 'get better'....better than what?

Sorry, lame attempt at humor.

It's hard to get my head around all this, wife and daughter still cry a lot and the guys at work keep asking when am I coming back.

 

Posted 11/14/2010 7:52 PM (GMT 0)
Willie:

I don't know much more than you do on chemo except that it is usually considered a last-line treatment after everything else has failed.

 

I too am on Casodex (after being on Lupron for a year) and I don't have a lot of real bad side effects.

 

With your low PSA it don't sound to me that chemo would be next in line.

 

You may want to check out a second line treatment that some patients do well on called "Estrogen Therapy".

 

This is  skin patches or a gel that raises the estrogen level which kills cancer cells and keeps the PSA down.

 

Unfortunately, most docs don't want to use it. They want to put you on the newest most expensive drugs.

 

Estrogen was used around 1960 along with DES which was an oral pill. The pill had bad side effects but not the patch.

 

Quality of life? Yeah, I hear that and I am going to put off any radiation or surgery as long as possible.

 

Keep us informed.

 

Don K.

Posted 11/14/2010 8:31 PM (GMT 0)
Thanks Don, Chemo was mentioned to me at my last vist, G9, spread to lymph nodes....not good.

I've surgery and radiation, plus hormone shots.

Was taken off Casodex at last visit as it can 'feed' the cancer, hoped to bring down my PSA but obviously hasn't worked out.

I'll ask about the Estrogen patches, worth a try. My understanding is that the reluctance is due to increased heart/stroke risk.

QOL is what it's all about for me now.

The writing is on the wall but the docs won't/don't give out timeframes and it's making my family miserable.

Maybe knowing would make us more miserable, I just don't know/understand why they won't tell you.
Posted 11/14/2010 10:16 PM (GMT 0)
Willie,

Sorry to hear about your progression. I think the main reason they don't give out timeframes is becasue they don't know. We have seen guys go for years, and some go for months. It is so dependent on where the PC goes. If it goes to the bones, it may be a long time. If it goes to a vital organ, it could be a short time.

I assume you saw the thread about Jevtana. Chemo is not considered curative. It may be that your best hope still is in the HT. Can't really worry about the potential side effects in this game in my opinion.

I am not in your situation yet, but with a Gleason 9, I really expect to be at some point. I have just tried to live each day as the best day I have left, telling those i love that I love them, doing some things I've always wanted to do, and enjoying every sunset I see. I could be hit by a bus tomorrow, while I am waiting for the PC to rear it's ugly head again.

Good luck to you. Have you considered seeing another doctor ? It could be that a different approach may add some time, rather than just stopping the HT and doing nothing.
Posted 11/14/2010 11:12 PM (GMT 0)
Thankyou Goodlife, I had not noticed that thread but have read it and it confirms my fears about QOL issues.

Those fellas are very brave to take that stuff, not sure I want to go there.
I realize it's not curative, so it's a big or huge decision esp if you're not going to be using it for palliative purposes.
I've seen three doctors, one told me I'd be dead by last Christmas and refused to 'use resources' on me and the other two were/are okay.
One is my surgeon, he looked at me in a very sad way last time we met and has stopped all trial drugs as he had a patient in a very bad way due to one of the drugs. Says he'll never put his patients on it again. Don't know which drug, he wouldn't tell us.
The other is a medical oncologist who talks to the floor during our visits but looks up if you ask a direct question. Impressive!

My family doctor gave my wife a list of questions, one of which is timeframe with/without chemo.
She'll ask without me, not sure I want details just yet but wonder if he'll even answer it.

I agree with you about enjoying whatever time is left, was so sick for awhile that life was quite grim.
Now, I feel much better without the Casodex but I am concerned about staying as well as possible for as long as possible.

Without the lymph node involvement you could go for many years, Goodlife and I sure hope you do.
Stay well and be happy, it's the only way to be.
As they say, it's a short life so make it a good one!

Thankyou again.

Willie
Posted 11/15/2010 12:44 AM (GMT 0)
Hi, Willie - one option you may want to ask about is low-dose Ketoconazole.  My husband is a Gleason 9 with positive nodes.  Low-dose Keto plus Hydrocortisone worked very well for him for two years.  Adding Avodart can improve the effectiveness of the Keto.  He had minor side effects - acidy stomach and skin sensitivity. 

This treament now seems to have run its course and we are looking into a trial of Abiraterone post Ketoconazole.  If it does not appear likely he will qualify for the trial, we will be moving to chemotherapy with Taxotere. 

For my husband, Ketoconazole was a very good choice - we are hoping Abiraterone and MDV-3100 will soon be FDA approved.  The Keto controlled the cancer for a long time and in our case, delayed the decision about chemo. 

I hope you can find a good medical oncologist experienced with prostate cancer - we knew we did not want to work with doctors who treated my husband like a lost cause.

Good luck.

Posted 11/15/2010 5:50 AM (GMT 0)
Willy, don't give up the ship! Keep fighting! If you can't handle the casodex / lupron, there are new drugs out there that might be worth trying..Firmagon is one of them.. Carefully administered estrogen therapy has also stopped the progression when other treatments have failed..Heart attack risk?? Sure, but so what? Lately, they have been able to manage that pretty well. I hope you are being treated by a medical oncologist who has some positive experience in treating PC..You could still have 10 years or more with careful, aggressive treatment. But you will never know unless you try...

You wanted to know "how much time"?? Impossible to answer on an individual basis..You must have a copy of Dr. Walsh's book...On page 474 there is a mortality chart for those with metastatic disease.. It's from an older but extensive study done by the veterans administration. But why dwell on negative stuff?? That's all history. You need to worry about what YOU are going to do today and tomorrow..
Posted 11/15/2010 6:28 AM (GMT 0)
>>..Heart attack risk?? Sure, but so what?<<

i hear you Fairwind.  this PC stuff isn't for the faint of heart.

ed 

Posted 11/15/2010 3:01 PM (GMT 0)
Willie:  I second what Danielle said, look into Arbiterone it has had some excellent responses to advanced disease.  It was on track to be authorized by the FDA in the spring of 2011.  There are ongoing clinical trials.

David

Posted 11/15/2010 6:42 PM (GMT 0)
Good hunting bro, nothing new to say that you had not heard, prior.
Posted 11/16/2010 2:22 PM (GMT 0)

Willie B said...
One is my surgeon, he looked at me in a very sad way last time we met and has stopped all trial drugs as he had a patient in a very bad way due to one of the drugs. Says he'll never put his patients on it again. Don't know which drug, he wouldn't tell us.

Am I the only one who finds this infuriating?  Why would a doctor not divulge the name of a drug to a patient?
Posted 11/18/2010 7:24 PM (GMT 0)
Just an update from my appointment on Monday.

The onc wants to rescan me, looking for active mets due to the rise in PSA level.
IF and it's only an IF, they find anything, they may start me on Keto or some form of chemo.
They're also do a complete blood workup to make sure my liver/kidneys can cope with chemo, if needed.

He did say that as of the previous scans, he considered me to be 'an asymptomatic man with a history of Pca'.

I'm not going back to the Casodex, he feels it will feed the cancer at this point but I do have the Lupron injections every 3 months.
Glad to not be on Casodex, feel so much better without it.

Just waiting for the appointments.........unfortunately the doc wants to give me the 'news' before Christmas. Ugh!

Might take a rain check on that....

PS  Just wanted to add that the hormone shots, although not keeping the cancer totally at bay, are helping to keep me pain free and alive!

If they're only working 70%, that's okay with me......

Posted 11/19/2010 1:22 AM (GMT 0)
Willie,

Sounds like a good appointment.

I sure hope you can have a good holiday in spite of the news.

We have to count each day as a gift.
Posted 11/19/2010 6:24 PM (GMT 0)
Danielle, as you can see my onc agrees with ya! Keto is on the table IF there are signs of tumor growth.
My onc doesn't use Avodart, not sure why but he does have other drugs to knock it back if it's growing.

I'm glad to hear that it kept your husband going for 2 years and best of luck with the chemo trials. I've heard good things about Taxotere and Abiraterone.

I've crossed my fingers that the scans are still mostly clear, have no symptoms yet, thankfully.

Fairwind, thanks for the information. I was just saying that the concerns about Estrogen are cardiac related but it's still an option that works well for some guys. Some days a quick heart attack sounds good.....lol Shouldn't joke but hey!

F8, dkob and Zufus, yep, concerns are just that, concerns.....things you have to weigh up in this fight against PCa. It's never easy and just so much information to absorb and digest.  Thankyou for your input, much appreciated.

Piy, we wanted the name of the drug but he wouldn't divulge, think it's in case the onc orders it for me down the line maybe?
Annoying though, would have preferred to know.

Goodlife, I'm hoping that the 'news' gets delayed til the New Year. Maybe that's crazy, esp. if it's 'active mets' but our family, along with everyone elses' deserves a break.
Same as Purgatory, we found out I had cancer in December, last year was failed SRT and it would be nice to just relax!

Have a wonderful holiday, we're looking forward to watching the Macy Parade on Thursday with the Gkids!

Have a Happy Thanksgiving everyone!  Early but timely! cool

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