Welcome new friend- Tommy76

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James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 8/15/2009 4:22 PM (GMT -6)   
In another thread, tommy76 posted for the first time. I'm moving his thread here so he can get the usual HW welcome. Welcome to HW, Tommy76.
He said:
Greetings,
Iam a new menber and want to share my story.... Iam 71...

At 52, in '92, had a DX of Pc with a PSA of 9.0. caught by accident after a full physical the month before in which i did not take a PSA. A new doc insisted i take a PSA...and thats how i discovered it. Had a RP , recovered no problem, went back to work in construction in 2 weeks ....wore pads for a few months till i dried up.

Went 12 years with a zero PSA till 04 ......in 04 it went to 2.0, 05 to 4.0, 06 to 6.0 , 07 to 08, and 08 to 17.0

Had bio on a small tumor where my prostrate was, was cancer. Had bone scan and CT , showed it had gone to pelvic bone.......no pain or other problems.
Have been on Lupron 12 months with zometa. no pain but many harsh side effects. my Doc says iam doing so good that we will consider stopping treatments in a month....my PSA is now
0.05.........
Side effects of both treatments are super hot flashes somtimes 30 min. apart, sore eyeballs,
super fatigue, 20+ lb weight gain, very short of breath.
iam looking forward to stopping this treatment and being rid of these side effects. iam very pleased with my progress ..............
iam astounded with the cost of these drugs...when i get both treatments at once it approaches $7,000.00...wow.

tommy76

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/15/2009 5:23 PM (GMT -6)   
tommy, i sincerely welcome you here to hw ,glad you found us. yours is a most amazing story. i need to ask you a serious question, and i am not being judgemental here, why did you allow your psa to rise so drastically for 4-5 years without any type of salvage treatment, i.e. radiation or HT or both? Was this a decision you made on your own ,or were you under the watch of your doctor during this time. The fact that you are doing so well and responding is both great and amazing. please keep us posted.

david in sc
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


DS Can
Regular Member


Date Joined May 2009
Total Posts : 195
   Posted 8/15/2009 10:03 PM (GMT -6)   

welcome, tommy76

Thanks for posting your story.  Best wishes for continued successful treatment. 

Dan


PSA 01/07 1.2, PSA 01/08 1.9, PSA 01/09 2.5
BIOPSY 02/24/09  PCa DX age 52
Right: 3+3=6, 3/6 cores 10% involved,PNI-Y
Left:  3+3=6, 1/7 cores <5% involved,PNI-N
LARP 04/09/09 nerve sparing. Final pathology:
GS 3+4=7, Margins uninvolved, 2 lymph nodes negative
Catheter out 04/17,1st no-pad day 05/03
25 mg Viagra nightly;100 mg:not ready for prime time
Followup PSA 05/28/09 <0.1
 
 


tommy76
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/15/2009 10:17 PM (GMT -6)   
yes....well, i was under the eye of the doc that operated on me in 92....in 07......
      at PSA of 2.0  and 4.0  he said he felt something but couldnot confirm what it was yet so lets watch it ......at 6.0 he was sure there was a problem....he retired, and i went on a 6 mo. RV vacation on the road and missed my next appointment . when i got home i got another doc and it had gone to 17........so i have explained on another thread where iam today....
   please read my notes on the  LUPRON thread.
 why do you think my progress is so amazing????....
 my friend [67] just went thru radiation for 47 days, original PSA 17 ,after treatment  was about 6.0 after 45 days......he looks awful, lost a lot of weight ,and generally looks ill.
     dont know  his PSA after 3 months. he is a straping guy,6'3, 225 lbs and strong......
  
   tommy76.

Post Edited (tommy76) : 8/15/2009 9:27:05 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/16/2009 8:34 AM (GMT -6)   
tommy,
no disprect intended, but sounds like your doctor needed to retire a long time ago. the amazing part of your story, is that after all the years of zeros you had, when the PC came back, that any doctor would let you go year after year with your reacuuring psa growing to such large numbers before any kind of treatment. A comeback number of 1.0 is considered high and potentially dangerous, I have read of numbers as high as 2.0. You said he felt something but didn't know what it was? Why didn't he biopsy it or run some kind of scan on it?

JUst sounds like you had a doctor that was way out of touch with the potential seriousness of your situation after the PC came back. I hope for your sake, that all those lengthy delays don't work against you in the long run, and that your current doctor is on top of the game.

My best to you

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 8/16/2009 6:03 PM (GMT -6)   
welcome to our family here at HW Tommy. Sorry to hear about your cancer coming back but it does look like our friend Lupron is working again. I just got off of HT after two years. I was hoping the side effects would stop immediately but that has not been true. Never the less I am not complaining. Life is great and I am happy.
As president of our zero club welcome aboard. Make sure it is a lifetime membership it gets old moving people in and out. LOL

peace be with you
dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) 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 .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


tommy76
New Member


Date Joined Aug 2009
Total Posts : 8
   Posted 8/16/2009 9:35 PM (GMT -6)   
thank you dale.......
 
   wow ..2 years......these hot flashes are  driving me crazy....did you take zometa....is HT the only treatment you had.
 
 iam convinced that every man will get this sooner or later....AND  no treatment is going to gaurantee you free of it later..no surgery or seeds or anything else, it  will only maintain you for a certain length of time..... and you will be back on some other treatment,    probably most people will die from some other ailment first......
 
 i have developed this attitude after RP and free for 12 YEARS....then boom...back again......my new cancer doc was not  impressed with the seriousness  of my PSA rising 17 points in 4 years....he rather scoffed at it........but gladly treated it.....since it had gone into my bone.
 
 i believe much about PC is absolutely unpredictable and unknown....there is so much controversy.....
 
 i do believe that high levels of sexual activity and sexual excitement enhances the possibility of PC .....i believe there is a connection.....
possibly because of higher levels of testosterone......
 
 tommy76
 
 
   

Post Edited (tommy76) : 8/16/2009 10:11:12 PM (GMT-6)


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 8/17/2009 12:02 PM (GMT -6)   
Tommy,
I have to agree with David on this one. I think your doctor should have started on HT sooner and at least find out where the PC is.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1

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