1st Anniversary......Repost

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aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 1/3/2009 5:06 PM (GMT -7)   
Hello to all the good people here,
I just felt like I should include my diagnosis since I have become a regular visitor here.
Please feel free to comment on my results. I would like to know if I am out on the boat alone. I know there are a lot of people who can read this stuff better than I.
 Thanks
 
 
Diagnosed at age 50 with Advanced Prostate Cancer....AARRGGGGHHHHH :-)
Biopsy of 12 cores revealed:
3 3+4 80-100%
8 3+3 50-90%
2 cores revealed Benign Prostatic Tissue....no score
Initial PSA 344
12/03/08   .3
Some lymph node involvement but nodes have shrunk by 2/3 since Feb. 08
No Mets.
Currently on Lupron and Casodex.
Drs. at MD Anderson read the slides and all the reports from my Urologist and here is what he told my wife and me:
8-12 years on Therapy. Maybe radiation, possibly Proton.
After dramatic drop in PSA was very happy.....so was I.
Going back every 6 months for CT Scan and Bone scan...... just to keep my foot in the door
Seeing my Urologist every 3 months for "The Shot"
Thanks to all of you for chiming in.

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/3/2009 7:14 PM (GMT -7)   
Thanks for the update Aspen. I do have some questions. What exactly are they meaning when they say 8 to 12 years on therapy? What have the past few PSA readings been? Did you have any symptons prior to diagnosis? Did you have surgery?

Peace to you my friend

Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/3/2009 8:17 PM (GMT -7)   
Aspen it is good news to survive this beast at any age, stage, stats. Your results are good as is the normal case on these drugs for the majority of patients considering the time frame, stats, etc. I question the 10-12 yrs. or such thing right away. Talk to me and others 1 or 2 yrs. from now after doing these drugs and let me know if you think you could actually do 10 more or less yrs. It is possible of course, but it will drag you down and will have significant side effects, that you probably will get to hate (bluntly talking). I hope for your sake you don't have to use these that long, maybe 1-2 yrs., and maybe you could take a vacation from them (intermittent use) or maybe you could find alternative drugs that have different effects (always look for others, they exist....does not have to be what I happen to use either). Also, if you don't have the insurance coverage for 10-12 yrs., expect $7000+- a yr w/casodex, so 70-100K for 10-12 yrs. just for the drugs alone (maybe litttle less or more...Lupron varies hugely depending upon the seller). Hey don't have to listen to me, but maybe confirm what I am talking about...maybe go post or look at hrpca@yahoogroups.com (com I think it is) yahoo groups has a forum for hormone refractive prostate cancer patients, alot of shared information with people like you and me (where we stand in the fight), alot of choices other patients are taking for this fight, fast way to compare and see what else exists. They don't take the drug that I am on either(maybe a couple might), so the site is unbiased in case you wondered. Find other protocols, other drugs, other therapies...even if you don't need them now, you might sooner than you wish or be prepared to fight if these currently drugs seem to fail you, plan ahead so to speak. I assume you are seeing an Oncologist at this Cancer facility, if not see one for second opinion as to treatment protocol, better to maybe see if you can find a PCa-type oncologist as this is whom knows most about all the protocol drugs and testings, etc., for PCa.

I am trying to give you a heads up on whats out there, I got 7 yrs. of protocols past me so far with half way decent results, I went off all drugs for 2yrs. as my own test, psa went to 1.4 so I am now resuming DES (my choice). I list my original stats. My onco-doc wanted me on those same drugs you mentioned..for life also..he is fired anyway...I have done fine with out him, got a decent oncologist whom runs prostate support group.

Dx 2002- bPsa 46.7 12 biopsies- all 75-95% cancerous (12 for 12); gleasons found 7,8,9's
ADT3 (5-6mos.)then radiations external-neutron & photon combo, ADT1-3 resumed( total 2 yrs.+), quit those went to DES (it outperformed ADT3 drugs-psa tests monthly to prove it), 1.5-2 yrs. on DES, stabil psa at .47 approx., quit it to see if psa would rise, took 1.5 yrs approx. to rise to 1.4; resuming DES in Dec. '08, getting tested for psa's monthly now to see results. (nadir psa post radiations- .06 after 6 mos. of rad.)

Yes, it is still a happy day and celebration not trying to ruin such either (straight talk found herein), I hope you get the best protocol that you deserve and we all deserve. Be vigilant in your care...look at everything....look outside the box (i.e. mainstream does not have all the answers obviously and which we can notice).

That first couple years is a real test on all us patients, seeing where we stand.

Keep up the good fight, good works, you can help others by sharing your journey too.
"Youth is wasted on the young"-W.C. Fields
 
"I wouldn't join a club that would have me as a member"-Groucho Marx

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