MD Anderson on Monday 9/27

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kbota
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Date Joined Aug 2010
Total Posts : 487
   Posted 9/23/2010 7:35 PM (GMT -6)   
Okay, I'm headed to Houston Sunday for an all day visit at MD Anderson Monday. As you guys know, I had an open RP on July 21. I'm Gleason 9, but I had negative lymph nodes, vesicles, and margins. My DX psa was 3, which was the highest the psa ever reached.

My uro still wants me to begin two years of Lupron. My onco says to wait. The head guy at Duke made a case for both, but said he didn't know what he would do were he me.

I've read most of Dr Snuffy Meyers book, and he is a definite supporter of Hormone Therapy, and even went so far as to say it can be curative. Bold statement I thought when most experts say it's not curative. Who's right here?

Anyway, I thought I would ask the forum for your suggestions of questions that I should be asking the MD Anderson Uro. I have a list already started, but I wanted to tap the synergy of this forum.

And because I have so much respect for everyone on this forum, I would so appreciate your thoughts as to what questions you would ask if you had my circumstances.

Thanks in advance.....
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !

Post Edited (kbota) : 9/23/2010 7:23:09 PM (GMT-6)


Cajun Jeff
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Date Joined Mar 2009
Total Posts : 4119
   Posted 9/23/2010 7:38 PM (GMT -6)   
Gush guy I have not heard from you. I think your are making a wise move going to MD Anderson for another opinion. I do think these guys are great. Do keep me posted. Please let me know.. You do still have my number.

Cajun jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 9/23/2010 7:52 PM (GMT -6)   
Hey Jeff. Yup, still got your number. It's in the old blackberry. I spent the first part of this week in deep south Texas. Picked up my new truck in Houston on Monday. Got home late Wednesday evening. Been goofing off today.

I'll get another opinion at MDA on Monday, then visit Dr Sartor the following week at Tulane in New Orleans.

Oh yeah,....my uro here in Alexandria is going to start me on caverject tomorrow. (Appt 10:45) Will have to be careful to not break any speed limits on my way home afterwards....lol (assuming that it works as anticipated.)

When I find the answers to what you and I discussed, I'll give you a call.

k
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !

60Michael
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Date Joined Jan 2009
Total Posts : 2243
   Posted 9/23/2010 7:57 PM (GMT -6)   
Kbota,
Not able to answer your questions but looks like you have done your homework and I wish you the best. Keep us posted as a number of us might be traveling that path in the months and years to come.
Michael

BB_Fan
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Date Joined Jan 2010
Total Posts : 1011
   Posted 9/23/2010 8:07 PM (GMT -6)   
Smart move going to Anderson to discuss HT now. The outcome of your discussions will be of great interest here. Regarding Dr Myer, I don't believe he says that HT is curative. I believe his position is that HT can drive PCa into a remission that must be actively maintained, BB
Dx PCa Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4) - 8 cores, 4 positive, 30% of all 4 cores.
Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%, nerves spared, no negitive side effects of surgery.
PSA's < .01, .01, .07, .28, .50. HT 5/10. IMRT 9/10.
PSA's post HT .01, < .01

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 9/23/2010 8:21 PM (GMT -6)   
BB_Fan said...
Regarding Dr Myer, I don't believe he says that HT is curative. I believe his position is that HT can drive PCa into a remission that must be actively maintained, BB


Check Dr. Myers book; "Beating Prostate Cancer; Hormonal Therapy and Diet" Page 54
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !

Fairwind
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Date Joined Jul 2010
Total Posts : 3887
   Posted 9/23/2010 9:12 PM (GMT -6)   
Kbota, I'm right where you are now, maybe a little worse, positive margin, one vesicle.

Had a long talk with my SURGEON today, and he recommends adjunct radiation ASAP with HT.. He recommends starting within 3 months and for sure within 6 months EVEN IF THE PSA STAYS AT ZERO, which he has little hope for...His reasoning: the sooner you start radiation, the better it works, and when combined with HT, it works even better. He added, "if you were my father, this is the treatment I would recommend.." I think he meant that..When I told him I was going to talk with a big gun, nationally known research oncologist who runs Colorado State University's prostate Oncology Unit, Dr, Crawford, he replied "good for you, you need to do that"....

2010 is going to be a very interesting year..
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 9/24/2010 9:14 AM (GMT -6)   
 
 
My sister works at Methodist Hosp in Houston and she wrote to me that there is a chemotherapy clinical trial going on now at MD Andersen that does not require a patient to have failed or been on HT therapy.  Would be interested to know if they feel this is a possible cure since Chemotherapy in the past was only used to relieve pain in Prostate Cancer patients.  Since I have failed SRT I would be very interested.
 
Thanks,
Jerry1 
Age 70
DX 8/13/08 , PSA 4.0, Biopsy 14 samples 1 positive 12% of sample,
Gleason Score 4+4 =8 Bone scan and MRI negative
Da Vince surgery on Oct 17, 08 Florida Hospital Dr Vipul Patel
Post Gleason report 4+4 = 8 Lymph nodes on both sides negative
margins Negative Stage II (pt2a)
Cath out on October 29th left in longer due to small leak.
11/19/08 dry no more pads
12/2/08 first PSA <0.1
3/6/09 6 Month PSA 0.0
6/3/09 9 month PSA 0.1
7/14/09 PSA still 0.1
10/15/09 PSA 0.3
10/26/09 surgery to remove 3 clips in bladder neck
11/16/09 PSA 0.3
12/14/09 PSA 0.4
12/28/09 PSA 0.5
Start salvage radiation treatments on January 18th.
Finished IMRT
First PSA after 3 mos. 1.5 not good news

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 9/24/2010 9:44 AM (GMT -6)   
Jerry1- It appears that chemo for PCa has less effect than chemo in other types of cancers(this is known), considered very palliative. I don't see compelling evidence that I know of showing it to be actually great if you want to put a word on it, but willing to keep an open mind especially since the newer Cabitzitaxel does seem to be a step in the direction of a better chemo for PCa. I do know of a lower stats patient whom did chemo first, then brachy seeds and so far undetecable psa at around year 9 or so now. (it was the first of this protocol I witnessed)

In Dr. Walsh's book if you read him, between the lines, he didn't say HT is not curative, only that it is normally not curative(there is a difference in terminology there) and some others write similar. Now it could be very rare and/or undocumentable that some patients have done so...I believe that is where Dr. Myers is coming from, that is my s.w.a.g. on this.
 
Kbota you got many opinions and still to weigh the scales, best to you atleast you know how wild this can be in discussions. It is a hard decision like most of the ones we patients, face.

Post Edited (zufus) : 9/24/2010 8:48:52 AM (GMT-6)


Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 9/24/2010 2:05 PM (GMT -6)   
kbota,  My uro onc received his oncology trainning at MDA and recommended no further action in my case.  My stats are similar to yours except that I am now 2 years out from surgery.  I have no idea what to ask going forward.  I am glad you are taking this step amd hope you will keep us informed.
 
Carlos

Diagnosed 2/2008 at age 71, PSA 9.1, Gleason score 5+3, stage T1c.
Robotic surgery 5/2008, LFPF at 6 wks.,nerves spared, stg. pT2c, N0, MX, R0, Gleason 5+3
PSA <0.1 at 26 months and at all tests since surgery.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7078
   Posted 9/24/2010 4:46 PM (GMT -6)   
Fairwind,
 
You got the same suggestion I got - kill it before it grows -
That was a common reaction from the doctors I talked to.
I did my IGRT with a still-undetectable PSA, but nothing else looked good, so ...
 
We shall see what happens.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 9/24/2010 5:36 PM (GMT -6)   
142, yeah, I talked at length with Dr. Crawford's gatekeeper, he wanted my stats and history and when I was done he ventured the opinion that had I started my journey at the CSU facility, the treatment path would have been the same, surgery, radiation, HT. With Gleason 9 he said, you give it everything you have...Still trying to get in to see Crawford..

www.edavidcrawford.com/drupal/

Post Edited (Fairwind) : 9/24/2010 4:39:50 PM (GMT-6)


mr bill
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Date Joined Sep 2010
Total Posts : 707
   Posted 9/25/2010 8:45 AM (GMT -6)   
Just reading over this thread. I had robotic sept 8, 2010. Gleason 9, post surgery pathology found invasion to 2 of 9 lymph nodes, seminal vesicles. I am wondering if MD Anderson is worth the trip from Pa? They are supposed to be #1. Right now I am going to the Cleveland Clinic.
My wife is from Mississippi, and I love the south. However, it may become somewhat cost prohibitive for MD Anderson or Tulane.

Does anyone have any idea what they may reccommend? I guess I am just grabbing at straws. The clinic is OK, but need some fresh ideas also.

Kbota, I wish I had some questions for you. It just seems so many are going through my head regarding the best thing to do next.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 9/26/2010 4:21 PM (GMT -6)   
Mr. Bill, hello, how are you?? Hope your surgery whet smoothly.. Like me, you do not yet have the results of that first post-op PSA test.. Your future course of treatment, like mine, will depend largely on how that test turns out...

HT is a given, I think you can count on that..Whether or not they also recommend RT is just something you will just have to wait and see on...

I can't believe a "center of excellence" treatment facility in Texas treats PC any differently than a "center of excellence" hospital in NYC or Boston..
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 9/27/2010 10:33 PM (GMT -6)   
Well, my wife and I spent most of the morning at MD Anderson. After the initial check in and a mini physical by Heather, I met with a Dr Shi-Ming Tu who is a Genital/urinary oncologist. Very well spoken, very nice fellow who did his best to answer all my questions. The bottom line is that there is no clinical data that suggests that lupron post surgery would be effective given my circumstances. He also stated that MDA would have done the same treatment that I've received todate, with the possible exception that they might have started me on Lupron BEFORE the surgery.

He did emphasize the importance of a good diet, maintaining the proper weight, and getting excercise 3 to 4 days a week. All of which work as anti-cancer agents.

So, at this point, I have my uro and Dr Snuffy Myers saying to use the lupron for a couple of years for a score of 2.
Dr Sartor and Dr Tu saying no, for a score of 2.
Dr Judd Moul makes a case either way.

I'm no closer to having consensus than before. <sigh> <dagnabbit>

Maybe I should stand on a street corner somewhere here in Houston, and take a poll of all the dopeheads and wino's that walk by. Apparently that would be as accurate.
or, maybe I could take a poll on this forum. But gee.....how many dopeheads and/or winos would I get? You guys might pollute the poll huh? <snicker>

no offense to all the forum dopeheads and wino's.....really

Can I request prayer? Or does that violate "the" rule?.....<snicker>

I'm in a strange mood tonight. It's been a really long day, and it's past my bedtime.



k
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 9/27/2010 10:57 PM (GMT -6)   
kbota,

As a Gleason 9 guy, I did the same thing you have done. My surgeon from Cleveland Clinic said that current thinking there was to wait until PSA change.

U of Mich said nuke it within 4 months.

Local rad Onco said nuke it now, oh and there is a 1 12/2 % chance of radiation tumors.

Local uro wants me to do chemo, radiation and HT.

I have decided to wait. So far, so good, but, the other shoe could drop any time.

If we could know it was localized or systemic, it would make it easier. I am not not of nuking my prostate bed, bladder, and rectum, only to find out it has metastasized any way.

Good luck. Maybe a dart board would be good.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

John T
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Date Joined Nov 2008
Total Posts : 4268
   Posted 9/28/2010 10:42 AM (GMT -6)   
Kbota,
If you define curative as low and stable psa after one or two treatments then HT is curitive for about 30% of the patients as they never have the need for futher treatments. There seems to be a bias against HT at most of the major cancer centers and a strong bias for HT by the Onco specialists like Strum, Myers, and Scholz. I personally would go with what the experts do, as they treat tens of thousands of advanced patients and use experience based protocols rather than older proven protocols.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 9/28/2010 11:10 AM (GMT -6)   
Goodlife:
 
I sent you an email
 
Mel

Cajun Jeff
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Date Joined Mar 2009
Total Posts : 4119
   Posted 9/28/2010 3:00 PM (GMT -6)   
Hi Kbota: As you know I was at the GFMPH gathering this weekend and Goodlife and I were having this discussion about you!. Just wanted to let you know that Goodlife is aware of your situation and I told him that you and I have spoken. Will try to give you a call tomorrow.

Cajun Jeff

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 9/28/2010 8:57 PM (GMT -6)   
Sounds good Jeff. I'll look forward to talking to ya ag'in. I'm so glad you guys had a great time at the weekend PCa retreat. I wish I could have joined ya. Maybe next time it can be at your house Jeff, and we'll get a bunch of cajuns together with all dem yankee's.... Man, we could have us a time then huh? Do it in Feb/March, and we'll boil up a few sacks of mudbugs. I'll help.

I have another appt with my uro tomorrow afternoon. He's going to try another shot of caverject at a higher dosage. Hope this one works better than the last one. I told my wife that doc was going to ask her to give the shot this time. I think I scared the poor girl. (Ah think she's afraid it might "go off" in her hand.... As you know, dem cajun gals act funny when dey be skeeered. he he

ahem;
Anyway, she and I just got back home from Houston a few minutes ago, and got the truck unloaded....whew! I had to get her away from Houston and the Galleria. She be dangerous in that place alone with a credit card. Although she did buy me one thing at Dillards.....a new pack of drawahs. Which I sorely needed.....he he

I guess I shouldn't get on any forum late in the day when I'm tired.

Nite all....and God Bless

rut roh...ah may get a ticket after that one....cuz I know I violated something, or someone....he he

<click>
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !

Post Edited (kbota) : 9/28/2010 8:05:02 PM (GMT-6)


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 9/29/2010 5:58 AM (GMT -6)   
LOL too funny for words. It looks like that gathering will be mid April and I was thinking the same thing Mudbugs!!!!!

What thinking about that Dr visit with the misses handeling the MMMMM...Which thing might go off?????? LOL That could be the extra dose to get that thing to work ...

Cajun JEFF
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED
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