Hi Everyone-Newby-metastatic G9

Flyboy316, sorry you need to be here but very glad you found us. Your tone is pretty upbeat so that's great. The first couple of weeks are the hardest for most. As you seem to have already found, this forum can be really helpful. Ask, vent, whatever you need. This is for sure one place where we really get what you're going through.

And, let me be the first to welcome you to the Gleason 9 Crew. Unfortunately, no matter what's found in the various biopsy samples your Gleason score is based on the highest. So, my brother, you've got a Gleason 9 going there. You'll find quite a few fellow G9 cases here, most doing pretty well. So no matter what you find by searching the internet, there are many treatments and much hope. The stats may not be encouraging, but the treatments are advancing rather rapidly.

A medical oncologist sounds like a great next step. There aren't many that specialize in prostate cancer, and in your case it looks like you're going to want a superstar. Stage 4 Gleason 9 is a rather aggressive situation.

Be sure to check out the thread at the top of the forum "Newly diagnosed with PC? – read this thread first". Here's a link to it:
www.healingwell.com/community/default.aspx?f=35&m=2652250

We have a thread devoted to those with Gleason 9 cases and their somewhat unique concerns. I'll add you to the roster (and sorry to do so, but there we are). If you haven't found it already, you may find it encouraging to read through the many entries there and see how well so many are doing. Here's a link to that thread:
www.healingwell.com/community/default.aspx?f=35&m=2863652

All the best, Flyboy. We're here for you.
(Oh, you may get a lot more feedback if you put something like "metastatic G9" in your subject line. It's editable even after you've posted the thread).

Welcome to our forum and sorry you have to be here. Seeing a good Oncologist is definitely the right thing to do. Your situation is serious. At this point your best option is probably HT to slow down the PCa growth and lower your PSA. There are a lot of guys on here who have similar stage who have done done HT who will post their experiences. Good luck.

The Medical Oncologist will probably want to hook you up with some hormone therapy probably starting tomorrow. That's probably a good place to start. It will keep your cancer bottled up while you educate yourself and look at your options.

Welcome to the forum. Sorry you find yourself here but glad you found us. Let us know if we can help.

Hi flyboy. Dude.... Sorry about your luck. I can't relate to G-9 but I can sure relate to metastasis and high Psa. Hold on to hope.! I have heard having the boys removed is a effective. I can't bring myself to do it. I chose to do it chemically. Lupron, Casodex, etc. I may as well had them lopped off. They about the size of macadamia nuts now. Any how, I been playing the game for 8 years now. I don't much like it but it is what it is. You get through it and you live your life out loud and choke the life out of every day. Hang in there buddy. Todd

Welcome FLflyboy from a fellow G9.

What part of FL?

We have most of the state covered just from guys I know of.

BilllyMac who responded earlier is in Boynton Beach and 81GYguy who asked about veteran status is in Gainesville. Sonny3 is on Space Coast and AnxiousinFL is in Tampa. I am in Citrus county west central FL.

Sure there are more.

Depending on where you are in FL, lots of good choices in doctors. Dr. Michael Dattolli in Sarasota and Sand Lake Imaging work closely with Dr. Charels "Snuffy" Myers. You can check out the latter's free weekly videos at

askdrmyers.wordpress.com

You can page back in time as far as you want and virtually any PCa topic you can imagine has been covered.

In Tampa there is Moffitt and in Gainesville and Jacksonville there is Univ of FL & Shands. Sonny's doctors in Orlando used to be considered MD Amderson and are now part of UF Health Systems. BillyMAc can chime in with who his doctors are in west Palm Beach area.

I am sure there are mroe in Miami area and Panhandle but don't know first hand.

Like Todd (make sure to read his blog that you can link to from his signature line BTW) I don't think I could handle physical castration and went the medical castration route with Lupron.

I concur with the others that in our situation your medical team needs to include at least one uro, one raditaiton onco and one medical onco with as many as logisticallly possible from national PCA centers.

If you do go onto Lupron it is tough on bone strength. So you may also go onto Zometa or Xgeva to strengthen your bones and prevent so called adverrse skeletal events like spinal compressions and bone fractures.

Lupron also affects cardio. So keep your cardiologist in the loop. Since cardio is more fatal than prostate cancer, you have to balance the two at all times.

If you are in need of any major dental work, have it done before starting the Zometa or Xgeva that limit whether you can have tooth extractions without some experiencing lockjaw like symptoms.

Side effects from the Lupron vary by indiividual. I have been very lucky to have only had an initial flurry of hot flashes from about the 3-month mark to the 6-month mark and now nothing but alas also no libildo and some wieght gain and loss of muscle.

My saga started a little over a year ago and so far no surgery nor radiation nor chemo, just Lupron every 4-months and Xgeva monthly.

Let us know how you next consult comes out and feel free to ask lots of questions.

LupronJim

Guess I read the FLy boy as Florida boy, another Lupron moment.

Oh well there was another thread recently about doctors in Chicago area that may be close enough for you.

Flyboy
Glad you found us! Love your attitude! You'll get plenty of help here . Best wishes.
Bob pt3b gl9

Ok...only spots on bones were the ribs. Medical oncologist isn't sure that the cancer has spread. The bone scan and new chest ct looks like trauma and they are discussing a biopsy. The pelvic lymph nodes are slightly enlarged and there is a possibility it could be from a fistula that I have. Blood vessels close to the nodes could make them difficult to biopsy. We also discussed ht to see if it will shrink the possible problem areas. More consultation between the surgeon, medical oncologist and radio oncologist and they will get back to me soon. So..that is where I am at presently. Praying and hoping it hasn't spread, time will tell. Thanks to all that have replied. This is a great resource and a bunch of good people. We finally had some nice sunny days here. Flowers blooming, birds chirping....maybe spring has finally sprung! Everybody have a great weekend and take care of yourselves!

Welcome Flyboy to the reluctant brotherhood!

A fellow G-9er here to hopefully help with a little information. Hormone treatment will no doubt be the initial course. It does seem to work very well for everyone who gets it. I was on it for 18 months with good results. Prostate cancer seems to have an infinite number of variations and doubling times vary widely. A good Oncologist will help you on your journey to find the most effective treatment for the situation at hand.

I am 63 and have had an orchiectomy just this February. My psa numbers at times doubled every 2 weeks which is pretty scary. So we all agreed to the procedure. I have a very understanding wife. Just the thought of castration shakes a mans soul. But, I cannot say I am any worse off because of it. I think one may become more emotional than before. ( like actually crying watching a sad movie) but one adjusts. Sexual desire just pretty much evaporates and you dont miss it. Now romantic notions may INCREASE like feeling deep love for your mate and tender moments, but heading for the bedroom just dont follow anymore.

For me the Orchiectomy meant going off of my Lupron hormone treatment. In your case I understand you havent even begun any treatments. Maybe a slow thoughtful discussion with your Onc will set any such drastic procedure further down the road or even off the table.

As a G-9 with bone mets be aware that its possible eventually you will develop some pain in joints-hips. I have had 3 radiation treatments this last year, all for hips and shoulders. I learned not to fear radiation and found it to be generally tolerable. It worked miraculously in each case. I feared heavy damage and losing ability to walk again. Not so.

By Gods grace I am doing well and am approaching the 2 year mark with this nasty stuff. I have gone from a psa at diagnosis of 44 down to .14 then had it rocket up to 155 then slowly drop to mid forties upon radiation treatments, then having it drop down to 6.7 recently while taking Zytiga. So even a G-9 can buy some time with effective meds. Todd revealed he had a psa in the thousands at one time and he is still with us with a phenominal low psa lately.

G-9 cancer is a life changer for sure. I was dumbfounded when I got my diagnosis. Every day I remember I probably wont live to old age. But there is also a certain wisdom that comes from reflection; We just have to overcome our fears and live this new kind of life I guess. There IS hope. Much to learn. This is a new normal...we just have to adjust to it.

Flyboy, where were you stationed and what was your AFSC?

Flyboy - thanks for the update.

You're a poster boy for positive mental attitude. I enjoy the tone of your posts!

All the best. By the way, one of our forum members, the famous Sonny3, is already on that S1216 TAK700 clinical trial (he was randomized into the TAK700 arm). He recently hosted a GFMPH gathering in Florida, and is a great guy to talk to. Look him up on the forum and send him an email.

I started arm 2 of the s1216 clinical trial in June. This is the lupron/casodex side. I had my first 3 month shot of lupron and started casodex on June 6th. The last psa I had was 205. My one month check up was today and happily my psa was down to 8.756. Not a bad drop for one month! I hope everyone is enjoying the summer as best as possible, healing and staying positive!

Take care friends, Tony