Advanced &Aggressive Gleason 9 Prostate Cancer

popolous

New Member

Joined : Jan 2013

Posts : 7

Posted 1/5/2013 5:49 PM (GMT 0)

Dear All,

I need support if possible! I am 55 years old

I was diagnosed with agressive Gleason 9 prostate Cancer in October 2011 with a PSA of 53.
My doctor put me right away on Eligard shots every six month and 35 Radiotios sessions ended in February 2012

The surgery was not an option bearing in mind that the cancer has escaped the Prostate gland and CT scan showed Lymph nodes envolvment but I was lucky that the Bone scan came out negative.

MY PSA Dropped to 2.4 in April 2012
In July PSA droppoed to 1.54
Last week my PSA came back to read 3.1

My doctor suggested that I start taking Casodox 50MG daily along with the Eligard shots, but he said that if the Casodox did not knock down the PSA that will mean that my Cancer has became Refractory.

I would appreciate any advice from member to what should I expect in the future as I am so confused now and in a deep frostration.

I look forward to your feedback

Philip
London, Ontario
Canada

Piy

Regular Member

Joined : Mar 2010

Posts : 145

Posted 1/5/2013 6:20 PM (GMT 0)

Philip - You will undoubtedly receive many helpful responses with detailed questions and comments regarding medications, but the best advice I can offer is to find an excellent oncologist who specializes in Pca. My husband is also G9, 5 1/2 years out from initial diagnosis and doing well, please read my post from this morning. We are happy to answer any specific questions you have.
Amy

Michael_T

Veteran Member

Joined : Sep 2012

Posts : 4103

Posted 1/5/2013 6:59 PM (GMT 0)

Hi Philip,

Greetings from another G9, although I'm in the very early stages of treatment and I have no evidence (yet) of anything beyond my prostate. That said, I would echo Amy's comment above. The quality of my medical interactions and the personalized care I started receiving went way up when I found an oncologist that specialized in prostate cancer. The best way I can put it was that their knowledge was more cutting edge and that they have seen lots of other agressive cases.

No matter how on top of things your current doctor is, I would recommend an additional consult just so you can get as much diversity of opinion as possible. I know that many experts will also consult by phone and I'm sure there's other good resources near you. (Although I'm not familiar with your area.) Good luck!

Michael

InTheShop

Elite Member

Joined : Jan 2012

Posts : 11468

Posted 1/5/2013 7:01 PM (GMT 0)

Philip, welcome and sorry you need to be talking to us. You're in a scary place for sure but you still have plenty of options. I've not gone through what your facing but just wanted to welcome you to the site.

Others with better info will be replying soon. Please ask any question you've got.

Hang in there.
Andrew

littlenm

Regular Member

Joined : Nov 2012

Posts : 320

Posted 1/5/2013 8:58 PM (GMT 0)

Can't help you much with what to expect as we are also fairly new but have similar stats although sadly we do have bone mets. As a fellow Canadian, you might be in a similar spot that the urologist deals with the hormone treatments and not the oncologist (that is how it is in Sask). A second opinion is still warranted. We love and trust our urologist in Sask completely. There must be someone else in Ontario that has a great reputation too.

Good luck and all the best

waterloo

Regular Member

Joined : Jan 2009

Posts : 101

Posted 1/5/2013 9:55 PM (GMT 0)

Hi there

Not sure if this will help,maybe worth a read. www.hrpca.org/myers425.htm .

DrCharles Myers.Other will chime in

Deidre

Purgatory

Elite Member

Joined : Oct 2008

Posts : 25448

Posted 1/5/2013 11:15 PM (GMT 0)

Welcome,

No doubt, you are on a difficult path. I wish you only the best as you continue your PC fight.

david

popolous

New Member

Joined : Jan 2013

Posts : 7

Posted 1/6/2013 12:58 AM (GMT 0)

Thank you all for your prompt and great responses, reading your comments made me feel much better really!

There are still many good people in this world such as you all

The general feed back was to seek 2nd and maybe 3rd openion, any names in particular ?? I mean PCA specialists any where in Canada or even the U.S?

Many thanks again
Philip

popolous

New Member

Joined : Jan 2013

Posts : 7

Posted 1/6/2013 1:12 AM (GMT 0)

Hello again from Philip

One more time I would like to express my appreciation to all who have replied to me, you don't know how much you made my day despite my health issue

Philip

pepsiguy

Regular Member

Joined : Aug 2012

Posts : 134

Posted 1/6/2013 4:07 AM (GMT 0)

Phillip, welcome and I'm sorry to hear about your situation. You can see by my stats that you and I have much in common with this beast. I went on both eligard and casodex when dx and have had a fair response. Maybe the casodex will get the psa back down for you. I just met with the top Onc at KU Medical center to discuss attack plans when ADT fails which I hope is a ways down the road. For now it's 3 month psa tests under the Uro's care.

Good luck.

Kurt

Fred508nyc

Regular Member

Joined : Oct 2012

Posts : 35

Posted 1/6/2013 5:45 AM (GMT 0)

Hi Phillip, I have had a very good experience at Memorial Sloan Kettering in NYC. You can make an appointment on-line. My oncologist is Dr.Danilla. But the most important thing about Sloan and Hopkins in Maryland is that they are on the cutting edge of new treatment. Best wishes!

Fred

Infohound

Regular Member

Joined : May 2012

Posts : 232

Posted 1/6/2013 6:11 AM (GMT 0)

Hi Philip
First, you asked for doctor recommendations. If you've spent any time on this site, I'm sure you've heard this name many times, but I'll repeat it anyhow: Dr. Charles Myers in Earlysville VA is an excellent option. That's who we settled on, but in part that's because he's driveable for us, whereas some of the other excellent choices aren't -- like Scholz and Lam in CA. I've heard great things about Memorial Sloan Kettering. We also saw Dr. Eugene Kwan at the Mayo Clinic in MN, and while I did like him, I still felt it was a big step up in aggressiveness and expertise when we went to Dr. Myers.

My husband is also a G9, and had an initial PSA in your neighborhood (a smidge higher). Dr. Myers recommended a more aggressive ADT approach (triple blockade, plus some other stuff -- vs. the single blockade you've been on to date). He said the "standard treatment" is really for the "standard case" which is a G6 (that's the most common Gleason rating assigned when cancer is diagnosed). G9 means you've got a more aggressive cancer, therefore you need a more aggressive treatment. So a normal triple blockade would be casodex + an Eligard or similar (like Lupron, Firmagon, etc.) + Avodart. He feels pretty strongly that many men who are told they are castrate resistant really aren't, they just aren't on a strong enough ADT regimen.

Don't despair. So your single blockade isn't doing what you need done -- that's fine, there are plenty of reinforcements you can still call in before you'd be castrate-resistant.

Hang in there -- better news is ahead!

zufus

Veteran Member

Joined : Dec 2008

Posts : 3149

Posted 1/6/2013 11:56 AM (GMT 0)

See the website www.hrpca.org (proven treatments tab) to see what has been tried and used on PCa, it is possible to sequence some drug therapies, combine drug agents, switch to way different agents and maybe get good responses/results. I also, know so (not just book readings) as I have done so and charted all my results, seen such in some others and witnessing of some others like Dr. Fred Lee (Michigan) whom is alive at year 33 now with incureable PCa from around 31 years ago after first treatments. Also, Dr. Myers is a survivor/thriver with PCa that was not contained, I think year 10-12? They also have done things outside the so called conservative 'norm', this type of evidence gives hope to others.

Howard Hansen formed the site www.hrpca.org he battled it for 17 years and even had brain mets radiated twice, rare for mets to show up their, probably because he did so many therapies that it could finally make it their. His family still runs the website, too. Alot of warriors have looked into various options and have shared such information to others.

www.paactusa.org (newsletter online free pdf files)
www.prostatepointers.org (PCa groups)
www.ustoo.org (support groups probably even in Canada too)

Post Edited (zufus) : 1/6/2013 10:17:05 AM (GMT-7)

popolous

New Member

Joined : Jan 2013

Posts : 7

Posted 1/6/2013 6:22 PM (GMT 0)

Dear Kurt / Fred / Info Hound and Zufus

Thank you all for your feedback, I really appreciate that

Philip

compiler

Veteran Member

Joined : Nov 2009

Posts : 7722

Posted 1/6/2013 6:26 PM (GMT 0)

Infohound:

Can you email me.

I'd like to know more about Dr. Kwon.

I saw him give a presentation and we were VERY impressed.

Mel

popolous

New Member

Joined : Jan 2013

Posts : 7

Posted 1/13/2013 12:14 AM (GMT 0)

Hello again,

Yesterday I had a meeting with my doctor at the Victoria hospital in London-Ontario, he added Casodox 50MG daily in addition to the Eligard shots every 6 months.

He is hoping that will make the PSA decline, but after I left the hospital I remembered to that I should have asked him about the Avodart as when I asked him about whether to add Avodart as INFOHOUND suggested.

I will have to send him an E.mail in this regard.

The doctor asked me to test the PSA pn March 1st.

I hope that my PSA will drop by then

All the best for everyone

Philip

popolous

New Member

Joined : Jan 2013

Posts : 7

Posted 1/13/2013 12:19 AM (GMT 0)

Dear Zufus,

Thank you so much for the valued information that you sent me, I will have to follow your important feedbacks in the future as your case is very similar to mine.

Thank you again
Philip

popolous

New Member

Joined : Jan 2013

Posts : 7

Posted 1/13/2013 12:29 AM (GMT 0)

Dear all, Hello one more time

I have a question in my mind that no one from the doctors I met during the last 12 months could answer, but I hope that I can get answers from real life through you guys, I was asking doctors HOW LONG WOULD I LIVE AFTER THE GLEASON 9 CANCER BECOMES REFRACTORY?????

NO ANSWERS!!!!!!

I would put the question in diffrent way in this forum! I hope that I learn about people who had refractory Gleason 8-10 and for how long they would live, any examples from real life please?

Any one who knows someone with the same case who lived long life??

I am sorry for confusing you, but I really like to know

Philip

rjp6902

New Member

Joined : Jun 2011

Posts : 3

Posted 1/13/2013 1:13 AM (GMT 0)

My father was in the same situation as you last year. When diagnosed his PSA was over 90. I got him into see Dr.Myers and ultimately he ended up at Sand Lake Imaging in Orlando, Florida. With the help of feraheme, his metastatic cancer was narrowed down to three clusters of lymph nodes. Five months or so after finishing radiation at Dattoli Cancer Center his PSA is .137 and dropping every month. Don't stand for a run of the mill oncologist with your care. Get to see someone who specializes in only prostate cancer. Its not impossible for you to still have a chance at a cure or at least a durable remission! You won't know until you explore your options. Do some research on oligometastatic prostate cancer. Educate yourself on this disease. I've spent hundreds of hours pouring over various threads here and have learned a lot.

Good luck to you.

pepsiguy

Regular Member

Joined : Aug 2012

Posts : 134

Posted 1/13/2013 5:26 PM (GMT 0)

How long? With all of the available drug options including clinical trials for HRPC who knows. Possibly years.

skeener

Regular Member

Joined : Dec 2009

Posts : 214

Posted 1/14/2013 12:28 PM (GMT 0)

Hi Philip

I am in your home city and was treated at Victoria Hospital. My cancer was not aggressive like yours but if you want to discuss it send me an email. My address can be had by clicking on my handle.

Carl

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