Two Year Update

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aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 4/26/2010 4:04 PM (GMT -6)   
Hello All,
Let me first say that this board and all its members have helped me through some tough times and helped me see through many foggy days. I don"t post often but I do pay attention to the posts and all the positive responses............
I am two years into my disease, Metastatic Prostate Cancer. Initial PSA of 342. Lymph node involvement. Am currently on Lupron and Casodex. Annual scans at MD Anderson. Today I am undetectable, have been for a year.Lymph nodes are normal. Side effects are OK. Doctors at MD Anderson have suggested intermittent hormone therapy with PSA checks every 2 months and when the PSA reaches 1.0, will resume Lupron and Casodex............here's the kicker;
Because there was so much cancer initially, Proton Therapy will have to occur first. They want to try and get rid of any cancer that may be in the prostate bed. No radiation to the lymph nodes at this time. Has anyone experienced Proton Therapy and has anyone had the gold markers inserted into their prostate? What am I in for? Again, thanks to all you guys and gals who make life somewhat easier ;)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/26/2010 4:19 PM (GMT -6)   
Welcome back, and thanks for the update. You have one heck of a battle on your hands, but sounds like you been doing well. Can't answer your questions directly, hopefully someone with some first hand experience will come along.

Good luck to you.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 4/26/2010 5:23 PM (GMT -6)   
aspen4, good to hear from you again. Thanks for your update and the good news of the undetectable reading. Wishing you a lifetime of good results.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 4/26/2010 5:39 PM (GMT -6)   
Thanks guys.
the "gold marker procedure has me a little worried though. I guess there could always be worse ;)

dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 4/26/2010 7:17 PM (GMT -6)   
Aspen: It's good to hear that M.D. Anderson is taking good care of you. Is Dr. Arujyo still your onc. and if so is Marileese still his assistant. I swear she seemed like the Dr. at times. I haven't been back there but am scheduled for my yearly pilgrimage in the next month. I finished SRT recently, they signed off on it at M.D. Anderson but I had it done in Washington, where I live. I'm currently in the middle of 2 years of ADT trying to clear up any random cells.

You've really done well, continued good luck and enjoy Houston.

David
 54 y.o.
 Diagnosed 4/10/08
 DRE Normal
 PSA-5.5
 Biopsy- 12 cores, 4 positive highest 4+4=8
 Bone scan, CT scan and Chest X-ray clear 4/16/08
 Urologist suggested surgery 4/16/08
 MRI on 4/24/08 clear no suggestion of lymph node   involvement.
 4/24/08 -Started on Lupron and Casodex preparing for HDRT and IMRT in late July.  This treatment will not preclude me from surgery if I change my mind.
Decide to have DaVinci surgery after another consult with surgeon.
6/19/08- DaVinci surgery at University of Washington.
6/25/08- Path report, clear margins, no noted extension
9/12/08- PSA <0.02 
12/05/08-PSA <0.02 Six months after surgery 
3/02/09-PSA <0.02 Nine months after surgery
5/02/09-PSA .10
8/17/09-PSA .21 Begin HT and set up for SRT to begin in 2 months.
 


aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 4/26/2010 7:46 PM (GMT -6)   
Yes David, Dr.Arajou is my Onc. I am lucky to have someone like him in my corner. MD Anderson has made me feel that my wife and me can beat this disease. It is hard to explain the emotions that run through me when we go down there. There is hope for everyone who has cancer. I wish you well. Where do you stay?

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/26/2010 8:30 PM (GMT -6)   
I have known some people that went through Proton and for the most part it was uneventful. I will watch and see what kind of responses you get. Please keep us updated

peace to 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
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
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%


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/27/2010 1:29 PM (GMT -6)   
Question it and research it and see top onco-docs for another opinion is a suggestion. Proton costs a fortune of course and I smell bias and agenda, maybe see what Dr. Scholz or similar has to say about it, I kind of doubt he would say it is needed or would make that much difference. But I question alot of things on PCa and we all should.  (shortened my reply now)
Youth is wasted on the Young-(W.C. Fields)


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 4/27/2010 2:35 PM (GMT -6)   
Interesting that they mention PROTON. My dad was treated with proton at Loma Linda CA back in 1997 for his first line of defense against his Prostate cancer. Still is cancer free. If you get the PROTON you will get to join the brother hood of the baloon. From what I understand a 'baloon with water' is inserted in the rectum to lift the rectum away while they shoot the proton beams at you.

I've heard of men having PROTON as a followup treatment after davinci if the PSA rises.

Good luck on what ever you do for your followup treatments. KILL THE BEAST!

Larry
Age 55 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
Final Path report:
20% of the prostate Involved
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0
Six month PSA - 0


aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 4/27/2010 4:02 PM (GMT -6)   
Have not heard of the "Balloon"
I have the blessing of top oncologists in my area and the oncologists at MD Anderson for Proton. Will not take a chance on this beast.
On another note: can anyone out there shed some light on the insertion of the "gold makers into the prostate.
I would like to know what I am in for as far as prep time and how I might feel afterward.
Not afraid but would like to know where I am going.....if you know what I mean guys ;))

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 4/28/2010 7:27 PM (GMT -6)   
I was considered "too far gone" for MD Anderson - Houston as a primary treatment. I have one acquaintance who went down every day from Dallas Love Field for treatment - racked up a few free flights on Southwest, and he is a solid zero ever since.

After DaVinci, they convinced me that my stats warranted radiation. I have had the Calypso markers implanted in the scar tissue area. Look for my Calypso / IGRT thread, just updated today. I suspect that the processes are very similar.

dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 4/28/2010 8:09 PM (GMT -6)   
Aspen:  I have always stayed at The Rotary House when i've been down there.  I don't know if you've stayed there or not but it is so convenient I've never really considered anywhere else.
 
Speaking of the balloon, when I had my 38 SRT treatments I had the balloon insereted every treatment, there are a few of us here that had it done with normal radiation but the balloon is mostly known by the proton treatment.  I believe everyone who receives porton treatment has the balloon insereted.  The theroy is pretty simple, the baloon stabilizes the area to be radiated and pushes the rectum away from it.  The place that I had my SRT done said it was a take it or leave it deal meaning if I didn't want the balloon then I'd need to find another place to get the SRT, they believed in it so much.  It seemed to make sense to me so i went with it.  I'll tell you right now there were some sessions towardw the end that were a little tough to handle but overall it went well and I believe that the balloon may help out down the road.  Most isssues with SRT don't rear their ugly head for three to four years. 
 
Good luck
 
David
 54 y.o.
 Diagnosed 4/10/08
 DRE Normal
 PSA-5.5
 Biopsy- 12 cores, 4 positive highest 4+4=8
 Bone scan, CT scan and Chest X-ray clear 4/16/08
 Urologist suggested surgery 4/16/08
 MRI on 4/24/08 clear no suggestion of lymph node   involvement.
 4/24/08 -Started on Lupron and Casodex preparing for HDRT and IMRT in late July.  This treatment will not preclude me from surgery if I change my mind.
Decide to have DaVinci surgery after another consult with surgeon.
6/19/08- DaVinci surgery at University of Washington.
6/25/08- Path report, clear margins, no noted extension
9/12/08- PSA <0.02 
12/05/08-PSA <0.02 Six months after surgery 
3/02/09-PSA <0.02 Nine months after surgery
5/02/09-PSA .10
8/17/09-PSA .21 Begin HT and set up for SRT to begin in 2 months.
 


aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 4/29/2010 9:09 AM (GMT -6)   
Thanks Dave,
We stay at the Rotary House also. Really a nice place and clean. I guess if the balloon becomes part of the process then so be it. Right now I am playing the waiting game with the insurance company ( Aetna ) that in itself is nerve racking.
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