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Posted 8/25/2014 9:49 AM (GMT -8)
Hi Restofmine, so sorry you are here as one of the G-9rs. I know you are going through the shock and fear of the diagnosis. So much information to absorb and research. My husband was diagnosed last year 6/2013 G-9 10 out of 12 cores 5+4, 2 cores 4+5. Yes it sounded pretty grim in the beginning. It has been a roller coaster for sure. I would think you would want to get with an Oncologist that specializes in a Prostate cancer. Have an MRI with probe with and without contrast. This will show extent of cancer.along with CT scan to check for distant mets. Most likely they will start you are Hormone therapy to slow cancer down. My husband pain and urinary problems were relieved fairly quickly once therapy started. There has been some threads are studies on early chemo treatment you may want to research. This shrinks the Tumors along with the hormone therapy. My husband has since original diagnosis and failed hormone therapy, has been diagnosed with a type of prostate cancer called nueroendocrine prostate cancer. This type does not produce high PSA, sine your PSA is relatively low for extensive disease I'm wondering if it would be good to inquire about testing. The good news is my husband is doing well. You can see in the signature his treatment and #'s. He has continued to work most everyday through the treatments. Tumors have shrunk considerably. He feels great works out everyday. He will gave CT scans in a couple weeks for restaging. Feeling very positive about them. You have found a good place for support and information.
Posted 8/25/2014 1:00 PM (GMT -8)
More than going where the best equipment is, go where the best radiation oncologist is and let him or her choose the tools.

Hopefully you can find one you are comfortable with in Amarillo TX or in KS if you choose the tradition 8 weeks of radiation.

I am choosing a two week procedure of SBRT for Gleason 9's that is only Mon-Wed-Fri week one and Mon-Wed week 2. To do that you may want to check with Dr Chris King at UCLA. The only other ROs I have heard do this high risk SBRT at a group of doctors in Toronto and Dr. Katz at MSK in NYC.

With advanced PCa it is also wise to get a medical oncologist. So if you go to LA to see Dr King at UCLA, Prostate Oncology group doctors Mark Scholz, Richard Lam and Jeffrey Turner are right around the corner in Marina del Rey CA.

If you go there either the week before or the week after Sept 5-7, you can also attend the Prostate Cancer Research Institute (PCRI) annual conference at LAX Marriott that has a lot of top experts presenting

prostate-cancer.org/events-calendar/conference-2014/

LupronJim
Posted 8/25/2014 3:42 PM (GMT -8)
Hi restofmine and welcome. I'm a G9 (5+4) and I'm still around...in fact, I don't plan on going anywhere anytime soon. Like several other G9s here, I went for the triple play of brachytherapy (HDR in my case), IMRT and HT. It's too soon to declare success, but I'm doing very well for now.

Re suggestions here about finding an oncologist that specializes in prostate cancer that was some of the first advice I got here and it was immensely helpful. I see Dr Lam in Marina del Rey and I consider him the QB of my team.

Also regarding your comment about your back--when I was first diagnosed I made the same link in my mind between my back and my cancer, so I know how easy that is to do. (I made similar links in my mind anytime I felt anything out of the ordinary.) In my case, the two turned out to be un-related and--although I'm not a medical professional and certainly don't know for sure--I'd bet that yours is unrelated as well. Keep in mind that there's a ton of things that can give you back pain (turns out I have an arthritic condition called stenosis, which is getting better with physical therapy). I was diagnosed about two years ago with my cancer and right now I worry a lot more about my back than my prostate cancer.

I do wish you luck and please ask whatever questions you have. There's a lot of smart guys here (I don't consider myself in that group) and you can get some great info to point you in the right direction and help you as you assemble your professional team. Good luck!
Posted 8/26/2014 6:42 AM (GMT -8)

SteelGuy said...
Update ... still fighting :-)

Got into the zero club again ... PSA 0.05. I think it was the radiation last Spring of the bone lesion that was found on my clavicle. The Zytiga probably helps too. Can't say enough good things about AZ imaging center and the C11 scan ... made this leg of the journey possible.

Even though i'm in the zero club, my doctor has me scheduled for chemo (taxotere and low dose carboplatin) this Fall ... I start in two weeks. I know it's the right decision, but still feel some trepidation.

Keep up the good fight and use the tools available to us ...

Ray

Ray, I agree on Dr Fabio Almeida and AZ Molecular Imaging.

Looks like we are both holding off on a treatment so we can attend GFMPH in Rochester NY last week of Sept.

The other reason I was holding off is to qualify for Provenge to leverage the abscopal; effect. Got the results today and now I have had two PSA increases at least 14 days apart, albeit tiny PSA scores PSA <0.04 in July, PSA = 0.04 Aug 12 and PSA = 0.05 Aug 26. Hard to believe that qualifies me for Provenge but will take it if it does, Dr Turner on the job of applying to Provenge manufacturer Dendreon.

www.cyberknife.com/Forum.aspx?g=posts&t=5390#jumptobottom

where my mentor Tall Allen posted on cyberknife forum

See you at GFMPH Rochester, Ray.

LupronJim
Posted 8/29/2014 5:28 PM (GMT -8)
Hey Guys, glad I found this thread, I'm new to this sight but have spent some time on UsToo over the past few months.  I was recently diagnosed in March 2014.  I'm 55 years old, had a rising PSA for several years, two previous 12 core biopsys were both negative, just showed some inflamation in the second one, other than that nothing unusual, so I was convinced that it was probably chronic prostatitis.  I got away from having biopsies, thinking they were doing more harm than good.  I went back to the urologist after a few years when some urinary problems and lower back ache made me suspicious.  3rd biopsy showed Gleason 9 with bone mets and nodes. 

Started on Lupron and Casodex immediately upon diagnosis.  PSA went from 88.7 to 0.6 after 3 months and most recent PSA after 4 months on HT was 0.2.  I will begin IMRT of my prostate next week to eliminate the primary tumor, seems there have been some recent studies showing a survival benefit from eliminating the primary tumor and there is a larger Stampede study looking into this as well.  I guess it's a bit out of the norm considering the reluctance that I heard from my urologist but my Radonc, Dr. Stillwagon in ATL feels it would be worthwhile considering my age and health.  After doing a lot of research I concluded the same. I want to do everything I can to keep the beast at bay, I don't plan on going anywhere soon, I've got a goal to die of something other than PCa.  Since diagnosis I've changed my diet - no red meat, lots of chicken, fish, veggies and fruits, I excercise daily and I'm on the supplement regiment that Snuffy Myers recommends in his book. 

The side effects of the HT suck, but if it's keeping me alive I'm willing to deal with it.  I'm looking forward to posting with you guys for a long time to come on this site and plan on staying positive and fighting the fight.

Date   PSA

7/14   0.2  T <33, DHT <5

6/14   0.6

3/14   88.7

History since 2006 high/varying PSA, 2 neg bx

Dx 3/2014 age 55

Bx 9/12 pos, 5 were G9 4+5(100%, 80%, 70%), 2 were G8 and 2 were G7

Mets to my spine, pelvis, ribs,

Mets to multiple lymph nodes

Ed

Posted 8/29/2014 6:26 PM (GMT -8)
Ed, sorry to welcome you here to the G9 crew, but very glad you found us! I'm putting your name in lights up on the roster board, you lucky dog you. There's nothing exclusionary about this thread, it's just a gathering place for those of us dealing with this particularly challenging diagnosis and its somewhat unique treatment considerations. G9s are rogue and aggressive, and need an aggressive plan to have a fighting chance. Hammer and tongs, pliers and blowtorch!

You're going to find a bunch of guys here who can absolutely relate to what you're going through. For some of us those first weeks are a very scary time, but it sounds like you already are in the solution mindset. You've already been coping for a few months and it sounds like your feet are on the ground. That's great! The tone of your post is cooperative and open; I think you'll enjoy your time here. So often a first poster is brand new, running in here with their hair on fire in a white hot panic (ummm.... like I did to be honest). The guys come together to help transform that fear into a plan, and it's sometimes very cool to watch it happen.

Your story sounds painfully familiar. You may have seen mine at the top of the thread; I had the same multiple negative biopsies (3), finally found inflammation only, long pause (4 years for me, after all we don't want over diagnosis now do we? Humph.), then finally another biopsy and then yahtzee!!

Going after the primary tumor at this point in your situation is a pretty new approach, and I hope that works well. Those studies are interesting. My case was still "mostly" contained, and likely to get the whole works in the radiation field so we nuked the whole thing. Time will tell.

Our friend here, PeterDisAbleard (one of the leading lights here), has said ADT is the tastiest part of the crap sandwich that is our often multi-stage treatment system (he had surgery, radiation, and ADT). You have a great attitude that took me a long time to develop - the side effects are ok if that's what it takes to treat this mess!

Enjoy your time on the forum, we're here to help. Cheer, cry, vent, whine, whatever you need to do, most likely you'll find a lot of support flowing to you quickly. Hope to see you here for a long time.

Oh, and feel free to post on the main forum also. Everyone mostly hangs out there. You'll get quick responses to just about anything you ask there.
Posted 8/30/2014 5:18 AM (GMT -8)
Hi Ed-Bar.

Good to see another poster from Inspire.com.

I still frequent both boards. Here you will soon see that a layman named Tall Allen plays the same PCa expert and PCa advocacy role that our friend Rick Davis (Ardeee) from UCSF plays on Inspire.com. This site offers a much broader range of posters but despite its relatively low number of guys and care givers on Inspire.com, I find it worth my time.

It's probably too late for you (not for us) to consider joining us the last week of Sept for our semi annual gathering called GFMPH Good For a Man's Prostate Health (about 28 guys and 22 spouses this time but not always the same guys and partners). Since you are in Atlanta you may find the spring sessions in Baton Rouge in April 2005 or in Orlando area in even years a bit more convenient.

My spouse Karen and I so far have been to last Sept GFMPH in Rochester NY (immediately made to feel welcome even though we were newbies) and last April in Orlando area. We both enjoy the fellowship so much we will try to never miss one going forward (not a pity party at all, just a party with great folks who you will immediately consider your lifelong friends)

www.healingwell.com/community/default.aspx?f=35&m=3132396

Ed-Bar and I are already friends on Inspire.com, so email me if you have any questions. When you get time, please fill in your profile here so people can have access to your story and email ID. The site discourages using actual email IDs in threads since it opens you up to spam.

You can click the "My Profile" button at top of this link to edit your profile

www.healingwell.com/community/profile.aspx?f=35&m=2863652&p=204294

LupronJim
Posted 8/30/2014 6:40 AM (GMT -8)
Thanks devastated1,
I'm a G-9 with a PSA that's been rising for the past 10 months, from 4.7 to 47. Your pick me up helped a lot. This journey has been going on for almost 8 years on ADT and Provenge just 11 months ago. I've got a round of tests next week, CT scan and bone scan.hereshoping they're both neg. My MO has already signed me up for a clinical trial, all I can remember about it it it's more pills, ought to pay more attention, huh? . . . . Q
Posted 8/30/2014 8:58 AM (GMT -8)
Redwing,

Thanks for the warm welcome, it was comforting to hear of someone else who had the same biopsy scenario as I did with the same brilliant idea of not over diagnosing, oh well it is what it is, I can't dwell on what I should have done or where my doc should have steered me.

I think I got over the shock pretty quick and jumped into action mode, I quickly started studying and learning all I could about treatment options and found that more than ever I need to be my own advocate for treatment. The drugs that you can throw at this thing are happening so fast it seems that most doctors can't keep up as they run on their doctor treadmills every day.

Despite my DX I remain optimistic, my faith is solid, I have the support of family and friends, my job allows me to make doctor appts as I see fit and my med insurance is good, so I have a lot to be grateful for.

As for the IMRT treatment that I am about to start, yep, it's a pretty new way to treat it, but after reading Snuffy's book that explained how HT resistance usually starts in the prostate and the findings of the Culp study as well as some other articles I decided to go through with it. I don't want to be 12 or 18 months down the road and have the 1st level HT fail and wish I had done it. Going to throw everything I can at it now while it seems to be in a weakened state with declining PSA scores. I feel good about my egg head/genius of a Radonc, he is one of the top doctors in ATL and I don't think he's advising me to do it in order to make a buck. I'll let you know how it goes.

Jim, good to hear from you too, let's stay in touch.

Ed
Posted 9/12/2014 6:28 AM (GMT -8)
This thread has been locked to avoid possible technical problems for threads running 10+ pages. Please continue the discussion here:

www.healingwell.com/community/default.aspx?f=35&m=3182035

--PeterDisAbelard
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