DavidE, checking in

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FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 12/10/2010 10:56 AM (GMT -6)   

I'm not a regular visitor here, off and on at best. Regardless I thought I'd take a minute and post an update.

After 6 months on DES my PSA rose three months in a row and is now 81. (if you're not familiar with my case, see my signature)

 

While we try to line up the one of three options that appeal to us most (XL 184, Abiraterone, or Provenge) my Oncologist decided to try high dose Casodex. I'm not counting on a long response time, but you never know. What I am hoping for is a little stability in the PSA rise from 36 to 52 to 81.

 

XL 184 would be our first choice due to the preliminary data regarding bone mets. I am not eligible for the the current Phase II becasue I have no organ involvement. It kind of stinks when your cancer is not 'bad enough'! Rumor has it that there will be an additional Phase II early in 2011 that I would qualify for, but it's not 100%.

 

I have submitted an application for the Phase III Abiraterone trial in Los Angeles and hopefully we'll hear some news next week. This is the 'compassionate arm' of the study that provides the drug versus the change of getting a placebo.

 

Provenge is an option but availability is a concern and my Oncologist is working with Dendreon to determine if and where I could be treated. Kansas University Cancer Center was recently approved as an infusion site but there is no local extraction site. From a patient perspective, this is rather frustrating. What it means is I'd have to travel to Omaha or St. Louis or the most likely case would be three trips to New Jersey.

 
So, that's it in a nutshell - happy holidays and peace be with you all!

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/10/2010 11:01 AM (GMT -6)   
David, thanks for the update, and I wish you well in your continuing journey and your search for new treatments that are effective. Merry Christmas and Happy New Year to you and your family.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh, next in Feb.
ED-total-Bimix 30cc

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/10/2010 12:28 PM (GMT -6)   
David, thanks for checking in, good luck in your next step.
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 marg
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 11/10 Not taking it
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 9/23/10

Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 12/10/2010 7:55 PM (GMT -6)   
Hi, David. I've been checking in occasionally and was glad to hear from you. Good luck with the treatments and let us know how it goes. Happy holidays to you and your family.
AGE:58

Dx: October,27, 2008(the day after my birthday)
Psa 14.5,Gleason (4+3), all scans negative. Biopsy, 4 of 12 positive. DaVinci, 1/19/09. Confined to prostate? No lymph node involvement, all margins clear. 8 wk. Psa<.01,6mon .1,9 mon. .2. Began IGRT 10/09, finished.12/09. Since then,.1.

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 12/10/2010 9:27 PM (GMT -6)   
Thanks for the post David and as always you are a great inspiration. Chat soon on facebook.
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
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.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
PSA July 22nd of 2010 is .71
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%

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/11/2010 1:56 AM (GMT -6)   
David thanks for checking in and the update. I hope your application for the Abiraterone trial sees you accepted. Let us know how you fare.
Bill

FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 1/23/2011 8:45 PM (GMT -6)   
I'm back!

Well, I never really left.

Since my last post:

Jan 3rd - PSA was 142 so I stopped High Dose Casodex
The Abriaterone clinical trial site in LA filled up (long story for another time)
I have been accepted to s site in Atlanta and will go there this week.
If it all works out, I'll get the medication and be home by the end of the week.
I will have to return to Atlanta every two week until we can transfer to a site
closer to home. Omaha (2.5 hours away) is supposed to open by late Feb
and a site in Kansas City is in the works.

I also have received approval from my insurance company for Provenge but will hold off on that
for now becasue of my PSA.

smilewinkgrin
Dx'd 2/11/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
T3N2M1c
Lupron
Was on Casodex, HDK, Nilandron
Finished 12 rounds of Taxotere on 1/26/09
Then back to HDK+HC, then DES+Cumadin,
Then high dose Casodex
15 radiation treatments 06/10 for leg/hip pain
Current PSA(1-3-11) 142
Treatment: Lupron, Finasteride, Zometa
~~~~~~~~
Blog: prostatecancerat42.blogspot.com

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/23/2011 10:03 PM (GMT -6)   
David,
Nick Vogelzang is doing Provenge extraction here in Las Vegas at the Comprehensive Cancer Center of Nevada.

I'm just sayin'...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/23/2011 10:10 PM (GMT -6)   
Good luck, David.
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 marg
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 11/10 Not taking it
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 9/23/10

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/24/2011 4:45 AM (GMT -6)   
Dave will be rooting for whatever works in fighting this, Provenge is a good trump card it appears. Paact Newsletters Mark Moyad said that Dr. Scholz and Lam have a special deal with Johnson & Johnson on Abiraterone and can dispense it without a clinical trial (gig), this was in the latest edition. Maybe find out about that scenario. Probably cannot charge money for it since it is non-FDA, but I don't know how this works in this realm.

Dr. Mark Scholz 310-827-7707
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

MrsGFM
Regular Member


Date Joined Feb 2010
Total Posts : 115
   Posted 1/24/2011 8:51 AM (GMT -6)   
Good luck David. I read through your blog. We are your neighbors, living just east of the stadiums. A small advantage of going to Atlanta is you are escaping our COLD temperatures!
Mr GFM's statistics:
Age 50 at diagnosis
PSA History: 10-05 1.3, 01-07 2.09
8-07 - PSA at Biopsy: 2.26
2 of 12 positive
Gleason Score 3+3 6
11-07 - Robotic surgery hospitalized overnight.
Path Report:
Prostatic adenocardinoma, Gleasons 3+3+6, moderately differentiated
Percent of Prostate involved by tumor 5%
Staging pT2c pNx pMx
Margins free of tumor - no further invasion or extension
Catheter out in about 9 days. No incontinence.
Back to work in 2 weeks
ED - resolved. No meds needed at this time.
Post Op PSA: 03-08 0.01, 10-08 0.02, 7-09 0.04, 1-10 0.04, 7-10 0.04

FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 3/31/2011 8:49 PM (GMT -6)   
I'm back....
PSA is now up to 402 but it's to early to bail out on Abiraterone.
As discussed with the doc in Atlanta we need to give this up to 6 months.

The good news is my symptoms (bone pain) have decreased a lot over the last few weeks.

Aside from the trial I continue to work and was invited to speak in front of 350 JnJ reps on March 1st.
The speech went so well they have have asked me back for a few more presentations in the months
ahead.

Spring is a busy time for our foundation as well with two events in early May and the early planning
for our golf tournament next September.

I'll try to stop back in more often but I'm always available at my blog, facebook or our web site.

Stay strong people and remember 'it is what it is', you can't change the past but you can influence the future!!
If all you are doing is taking the medications and treatment, you are only doing about 20% of what you could be doing!
Dx'd 2/11/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
T3N2M1c
Was on Casodex, HDK, Nilandron
Finished 12 rounds of Taxotere on 1/26/09
Then back to HDK+HC, then DES+Cumadin,
Then high dose Casodex
15 radiation treatments 06/10 for leg/hip pain
Current PSA(3-24-11) 403
Treatment: Lupron, Finasteride, Zometa, Abiraterone
~~~~~~~~
Blog: prostatecancerat42.blogspot.com

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/31/2011 9:05 PM (GMT -6)   
We love you David.
I can't wait for the show in July!

Tony

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/31/2011 9:19 PM (GMT -6)   
Hello David, and thanks for the update, my best wishes to you.

If I may ask, and don't answer if you don't want to, of course. But can you describe basically the type and level of bone pain you have experienced so far, and what kind of pain control regiment you typically use to keep it at bay?

Thanks, and good luck.

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 marg
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
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,

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/1/2011 3:45 PM (GMT -6)   
David,
What is your cutoff for Abiraterone?

Tony

alf203
Regular Member


Date Joined Jun 2010
Total Posts : 52
   Posted 4/1/2011 7:47 PM (GMT -6)   
David; Hi sorry to here that the casdex didn't work, I just had my psa back today even though my psa rose for the last 5 month it jump 1.3 last month now it at 10.24. know back to you I have been on TAK 700 it a trial drug, now for 13 months my psa has been rising the whole time it goes up and down. Well now for the good part even though it has been going up my scans have been stable no movement or spread. I don't know If you will meet the requirements to be on the trial. Good luck david Alf203
AL - 49 Feb 09 dx PSA 118 Gleason score 5-4=9 cores 11-12-100% Stage T4m Cat Scan -mri -Bone scan/ caner spread - spine/lung/liver. Treatmen; casadex + trellstar 3 months PSA droped to .054- pulled off casadex .8/09 PSA 7.43 12/09 PSA 11.65 started lupron/ new drug tak700 1/10 PSA 7.81 -2/10 4.95 4/10 3.34 7/10 [4.02] 8/10 4.4 now upgraded to [T4M1C ] 10/10 psa 5.81 - 2/11psa 8.48

FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 4/3/2011 8:40 AM (GMT -6)   
David in SC: last June the pain in my femurs, hips etc got so bad I had to have 14 radiation treatments. At that time it was rather excruciating. Advil and Extra strength Tylenol did nothing. Oxycoden finally brought the pain down for about a week unitl the radiation kicked in. Not sure what to say other than excruciating; after 5.5 years (at that time) it was the first real pain flare up. At times it would take me 25-30 minutes to get out of bed just to go to the bathroom. Level? 10 without a doubt.

TC - as long as the pain symptoms are held off I plan to give Abby at least 4 months, possibly 6 as the doc in Atlanta suggests.
Dx'd 2/11/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
T3N2M1c
Was on Casodex, HDK, Nilandron
Finished 12 rounds of Taxotere on 1/26/09
Then back to HDK+HC, then DES+Cumadin,
Then high dose Casodex
15 radiation treatments 06/10 for leg/hip pain
Current PSA(3-24-11) 403
Treatment: Lupron, Finasteride, Zometa, Abiraterone
~~~~~~~~
Blog: prostatecancerat42.blogspot.com

tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 486
   Posted 4/3/2011 9:01 AM (GMT -6)   
David:
You are a hero to some (several, many; ME). I love your attitude and I love you.

The VERY best.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/3/2011 9:20 AM (GMT -6)   
David FLHW

Thanks for sharing that painful memory and descritption with me. I am just thinking ahead a bit, and wondered. I understand the "10" pain designation, as for 51 weeks, I experienced that after my bladder/bladder neck was nuked to death by radiation and I wore a surpapubic cath the entire ordeal. The only thing that kept any pain at bay during that horrible year, was regular doses of Loratab 10/500.

How fast do you get relief from the "spot" radiation for your mets? Does it take several treatments before relief, or is it more of a gradual thing? And how long does the radiation keep away the pain, i.e. days/weeks/months?

If these questions are too painful or personal, no need to answer. Just trying to learn more about a person at your level of progression.

You are a hero, to all of us here, a mighty warrior against the PC monster, and to me too. Bless you, brother.

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 marg
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
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,

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5815
   Posted 4/3/2011 9:43 AM (GMT -6)   
Gosh, thats a tough situation, All our prayers are with you and yours, Jack
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/3/2011 10:50 AM (GMT -6)   
Well tell it to get to work. Kenny Chesney and Zac Brown are awaiting us in July. WooHoo!

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3800
   Posted 4/3/2011 10:22 PM (GMT -6)   
>>You are a hero, to all of us here, a mighty warrior against the PC monster, and to me too. Bless you, brother.<<
 
amen to that. 
 
ed
 


 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

leeanglo
Regular Member


Date Joined Dec 2010
Total Posts : 191
   Posted 4/4/2011 9:54 AM (GMT -6)   
Hi David, i was 44 yrs old, at dx, last year with my desease signature as below so i have followed you story from the very begining of my battle with the enemy. You have my admiration for the way in which you have conducted your life during the progression of this desease an although i have a very positive outlook at the moment i often wonder where the strengh comes from as the symptoms get worse.I wish you luck with your battle and hope that you continue to be courageous and positive at all times.
                                     regards Lee Wainwright.
psa on dx 144, gleason 4+3 7 12 biopsie cores cancerous
T3a N2 M1.
psa after 3 months zoladex 20
T levels 0.5 after 3 months zoladex.
now taking 50mg cosadex daily also.

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 4/4/2011 9:02 PM (GMT -6)   
David-
God Bless you. I just can't tell you enough how inspiring you are and how much hope you provide to all of us. Expecting a drop in the PSA on the next post. Thanks for keeping us posted.
Father's Age DX 62 (now 65)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 0 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 2010 PSA <.02
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