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Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 4/21/2011 4:42 AM (GMT -6)   
cool  My PSA continues to slowly rise.  My surgical pathology was dismal  two yrs. ago. Gleason 9 (5+4) 2 pos nodes,sem ves invasion, positive mgns.
Clinical trial of Samarium to the bone and 39 treatments of IBRT. PSA barely hiccuped and continued a very gradual rise now at 2.28. No ADT to date still not ready to give in. Recent scans are still clean.In the process of replicating a few trial protocalls on my own. Just finished a month of disulfiram copying one that they're doing at Johns Hopkins. Did seem to slow the rate of progression ( I'll post more on this). Side effects were manageable. Yes I'm taking chances on experimental therapies without sanctioned monitoring but in a tightening healthcare climate I need to keep some trump cards in the bank. I carefully scour for interesting and appropriate trials, replicate the protocall and acquire what I need online.  Anyone else strolling down this path or am I tilting at windmills all by my lonesome?
 
JIm

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/21/2011 5:05 AM (GMT -6)   
Best to you in the fight on PCa.

Post Edited (zufus) : 4/21/2011 7:11:19 PM (GMT-6)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7203
   Posted 4/21/2011 6:10 AM (GMT -6)   
Zufus:
 
I must respectfully disagree with the implications of your post.
 
1) You seem to imply that treatments abroad are better than treatments here. Convince me.
 
2) More importantly, it seems to me that one should think INSIDE the box BEFORE going outside. I'll let the experts run the clinical trials and hopefully come up with something useful . I'll do the cliniical trials and experiments when the other stuff fails (if I fail SRT then the other stuff will eventually fail too, but hopefully by then there will be yet other stuff that has come on board by passing muster in Phase III trials). Many people mention Keto. But I've read that the SE to that are horrendous. Isn't there some recent new drug that will REPLACE keto (with a much better SE profile)?
 
You always seem to come up with this person who did this and lasted 20 years, etc. But anecdotal evidence -- especially with sample sizes of 1 or 2 or 3, should be considered with great skepticism.
 
Mel
 
 
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .Biopsy 11/30/09. Gleason 4+3. Age: 64. Surgery: Dr. Menon @Ford Hospital, 1/26/10. Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- yes.. PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06; 1/4/11-0.13,3/1/11--0.27. Now doing SRT

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/21/2011 7:43 AM (GMT -6)   
Jim,

I admire your ability to be willing the risk you are taking in your self-treating. I think I can understand the logic of your approach, but in my personal opinion, you are taking extreme risk, and if your methods don't work, or something bad happens as the result of it, who are you going to turn to? I could see perhaps the risk be worthing it, if you have gone through all the normal approaches and have them fail. At that point, you would have nothing to lose. Just not into people self-medicating, etc, that's not under the eye of a patient-doctor relationship.

I wish you well, and perhaps you will come across the right combination that will stop that rise.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/21/2011 7:48 AM (GMT -6)   
zufus,

you disapoint me this time. i don't mind, and even appreciate your thinking outside the box, but, however, when you bring in all this nonsense about doctor consparicies and drug company conspericies into the mix, it takes away from the credibility of the good part of your message.

i was afraid when i read jim's post, that it would be right up your particular alley. he's on an extremely risky path in my opinion.
don't get me wrong, you have a right to do as you please, as does jim.

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2667
   Posted 4/21/2011 9:01 AM (GMT -6)   

Why is wrong for drug companies to look to their bottom line and to make a profit?  Do they not have that responsibility to their stockholders?  Would it be better if they lost money and went out of business?  I just don't understand why every other company is expected to turn a profit, but drug companies are vilified for doing so.  Is a Chevy Volt actually worth $41k?  Is a diamond ring actually worth $6k?  Are athletes worth the millions they earn?  I happen to live near Abbott Laboratories and several other major pharmaceuticals and have regular interaction with employees and executives there.  These are not evil men.  Quite the opposite.  The ones I know are very socially aware, volunteer their time in many worthwhile causes, and are generous in their support of charities.  They generally make good money, though few are what I would call "wealthy."

I also have never met a money-grubbing doctor.  It's easy to toss out labels, but in the vast majority of cases it's highly unfair.  I have a brother who sacrificed to put himself through medical school and emerged deeply in debt.  He pays twice as much in malpractice insurance each year as I earned in salary.  He has made a good living, but he has had countless sleepness nights and more stress than I would ever want to endure, and I would not change places with him for twice his income.

I've never envied those who have more than I do, and I don't see the point in making them out to be evil.

Maybe it's this doggoned disease that sometimes makes us think those kinds of thoughts.


davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/21/2011 9:18 AM (GMT -6)   
Drug companies make a profit but create products that improve quality of life and life spans.

Some doctors, hardly all, make great livings. As they should! Every medical professional I have met has had wonderful empathy. I believe they are passionate about what they do.

Oncas - I am sorry about your pathology. I think that you will find many people in your same shoes on this site and on Yana who have been fighting a strong battle for many years already. I am sure they will be able to help and inspire you. Good luck.

Clocknut - I think this disease changes us for the better in many respects. Perhaps not our health, but I think it puts "stuff" in perspective and allows us to see life, companionship and emotions in a far deeper and sensible way. It is also understandable to be angry at times and for that anger to translate into less than productive behavior. But that's true of almost everyone before PCa anyway.

My biggest fear of leaving this country is leaving its medical professionals and facilities. And I grew up with socialized medicine and loved it btw.

Post Edited (davidg) : 4/21/2011 9:22:28 AM (GMT-6)


Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 4/21/2011 5:13 PM (GMT -6)   
Thanks for the comments. I feel that the point of my post may have been unclear.  I certainly appreciate the value of credentialed medical advice and supervision and I continue to seek out sound treatment options. I was actually trying to convey the problems associated with having to walk on eggs around your healthcare insurance provider when you're harboring a very serious disease and rolling up a heavy tab. I do nothing out of desperation. I'm optimistic and I'm trying very hard to keep this beast at bay. I believe that most of the doctors that I'm seeing would prefer to see me in ADT but I 've been trying to aviod this option by seeking out and participatin in evidence based clinical trials. Insurance companies monitor multi-trial participation and this will limit your resources unless you can occasionally eliminate the middleman. Trials employ complicated rhetoric but the plan is usually quite simple. "It's possible that this pill may benefit your condition. Take it for a short time and we'll see what happens." The trials that I seek judge their success or failure by PSA scores. The internet makes it possible to acquire what is necessary for participation. I've only tried this once and had what I believe a beneficial result but I'm researching others. Guys like us are always awash in touugh decisions. Hope I was somewhat better defined than my initial post. Best of Holiday guys.
 
Jim

Age 61
Northeastern Penna.
11/08/08 annual checkup (3 yrs late) PSA 8.04 from previously 2.7 in 11/05
1/23/09 biopsy 12 cores positive, 10 cores Gleason 7, 2 cores Gleason 8 70% tumor
2/06/09 cat +bone scans clean ..
3/26/09 RRP surgery Post op path .. upgraded to Gleason 9 (5+4), seminal vesicles involved, several positive margins, 2 of 9 lymph nodes positive.

80% involved
4/4/09 Dr. advising wait for significant rise in PSA and start hormonal treatment.

1st post op at 4 weeks PSA .6 urologist concerned

will retest in one month

8/15/09 bone and pelvic scans redone .. clean PSA .65

onc/radiologist recommending starting radiation treatments and 6 month shot of Lupron .. decided against this gameplan

9/11/09 consulting with med/onc today .. not impressed
My urologist now suggesting prostascint scan

Prostascint test done at U of Penna indicates cancer still confined to prostate bed.

PSA at .7
Gonna need a bigger boat .. found a good rad oncologist

10/21/09 Rad onc suggesting clinical trial of samarium 153 followed by IMRT

2/1/10 Samarium trial completed PSA 1.0

2/1/10 began IMRT 39 treatments 70 Gy

3/25/10 finished IMRT

4/28/10 PSA .93

7/23/10 PSA 1.2
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