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49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/13/2011 12:49 PM (GMT -6)   

 

.

At age 64 my PSA was 9.4 and my Gleason # was a 9. I had a good crop of Prostate Cancer.  I had a radical prostatectomy on December 19, 2005, after which I had 40 treatments of external beam radiation. This was followed by 24 months of Lupron. After all of the above, I got six months of treatment-free life, but the cancer came back.  

 Now that I am looking back, the one thing I would change is that I would still have it removed but it would be by DaVinci (robotic procedure).

 

 

I am 70  now. My prostate cancer came back in 2007 with my PSA hitting 22.6 now on a new test trial at Johns Hopkins called TAK-700. I started Oct 2010 PSA at 17.6 with good results my PSA as of April 2011 is 3.71.

As of 6/28/2011 my PSA is 1.53.

Lots of ankle swelling plus a spike in blood pressure

Get next PSA in Sept.


ralfinaz
Veteran Member


Date Joined Jan 2011
Total Posts : 712
   Posted 7/13/2011 1:04 PM (GMT -6)   
Hello Packard,
Beautiful car...One has to be old like I am to remember those. Thanks for reporting on TAK-700. Congratulations on your good response. Are you on prednisone? Hope you continue to respond to this therapy and your side effects are reduced. This chemical is similar to Abiraterone in that it inhibits androgen synthesis at the cellular level. Wish you the very best outcome and please continue reporting your progress.

RalphV
Phoenix, Arizona
DISCLAIMER: I am a prostate cancer survivor since 1992. The views or opinions expressed here are my own and are not endorsed nor supported by any agency or institution. Recommendations SHOULD NOT be construed as professional advice.
DX at age 58. RP; Orchiectomy; GS (4 + 2); bilateral seminal vesicle invasion; tumor attached to rectal wall; Stage T4; Last PSA September, 2010: <0.1 ng/m

Tim-from-Maine
Regular Member


Date Joined Apr 2010
Total Posts : 83
   Posted 7/13/2011 1:08 PM (GMT -6)   
Welcome to the forum. Sounds like your PSA is heading in the right direction - Is TAK 700 similar to Lupron?
PSA Feb 09 - 9
Dx age 62 - March 2009 - Gleason 7
Surgery - da-vinci RP on April 29, 2009 Gleason upgraded to 9
3 month PSA - <.04
6 month PSA <.04
9 month PSA .05
12 Month PSA .16
SRT began May 3, 2010
SRT complete June 25, 2010 - 38 treatments
PSA went from.16 to .5 during SRT - Then down to .1 3months later - then started climbing - July 2011 PSA=2.9

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/13/2011 2:18 PM (GMT -6)   
ralfinaz
Only on Tak-700 no Prednesone.

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/13/2011 2:23 PM (GMT -6)   
Tim-from-Maine
Tak-700 is a pill form that I take 600 mg a day. 300 am 300 pm
It works like lupron but different way.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3132
   Posted 7/13/2011 4:49 PM (GMT -6)   
From: DR. Mark Moyads book (Beyond Hormone Therapy) page 92 & 97 (Abiraterone & Tak-700) are comparative and both them differ some from Ketoconazole (even though they target the enzyme CYP17), Mark says hydrocortisone is not necessarily needed with these (but likely I guess suggested by many), but with Keto is usually given or needed. TAK-700 by Millennium and Takeda Co., phase III trials, may become FDA approved is my guess.

TAK-700 & Abby drug: 'adrenal androgen synthesis inhibitor', supposed to have less side effects than Keto drug, less need for steroid replacement therapy. Note this drug is also believed to work by not allowing the tumor itself to make male hormones (which at some juncture the cancer can do just that...produce its own), which is why this drug is also known as 'De novo androgen synthesis inhibitor. This drug can cause blood pressure increase (hypertension), low potassium levels and lower-limb swelling (edema), docs can prescribe other drugs to reduce side effects such as this. (do not use DHEA while on these drugs, it can ruin the efficacy). Just thought I would elaborate on this since, we will likely see more people using this or getting into trials with it. Hope it works well, looks encouraging.
 
Also, would yield to Ralph's very long term experiences in support groups and PCa issues, he literally has seen most everything and can elaborate on plenty with first hand knowledge (you don't get that from a book), so Ralph excuse my additional stuff on this.

Post Edited (zufus) : 7/13/2011 3:55:25 PM (GMT-6)


tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 340
   Posted 7/14/2011 8:42 AM (GMT -6)   
I applaud 49Packard for posting his experimental history here. Or anywhere else for that matter.
TAK, also known now as Orteronel is in Phase III trial. The researchers' experience in earlier phases, such as the one our friend 49Packard is in, had no requirement for prednisone. In fact prednisone was prohibited as it may mask the full effect of TAK700. There were apparently enough side effects in the safety and efficacy phase to encourage Takeda to add prednisone to the dosing for the Phase III trial currently running. This makes TAK more similar to Abiraterone which also requires prednisone dosing. The hope for Takeda is that Orteronel has a better safety profile than Abi and a more durable response. The drugs are similar in target and dose and only a superior response will allow Takeda to leapfrog Abi. This is my personal opinion. It is possible that it may be equivalent to Abi and also approved.
Our fellow poster and patient stxdave was on a Phase II trial of TAK last year and had a superb response in psa. His comments are archived here (I hope). Dave died of a fall not long ago.
We have perhaps 18 months, or more, to hear the results of the TAK-700 (Orteronel) Phase III study. For now, we wait.
Again, I salute 49 packard.

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/14/2011 3:17 PM (GMT -6)   
Check out my web site.
I have a fund raiser call Wheels for Prostate Cancer Resarch.

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/15/2011 7:29 AM (GMT -6)   
Good morning to all of you on TAK-700.
I feel great this morning. I have a little swelling of the ankles.
My last blood pressure at Johns Hopkins was 120/71 lowest in years. Over the last seven months I have been on five different blood pressures. The last one is working. I can remember readings of 190/102.
GOD has been good to me.
Just up dated web site http//www.wfpcr.org

alf203
Regular Member


Date Joined Jun 2010
Total Posts : 52
   Posted 7/15/2011 9:34 AM (GMT -6)   
49 packard;
  Good to here how your doing on tak 700, I just got of tak 700 in june,I was on the tak for 17 months it held the cancer at bay with no spreading.
 My psa drop in half the first month but don't be to alarmed if the psa jumps around mine went up and down the whole time untill the end then it
 started to go up at a steady rate untill it spread. I did have problems with my feet and legs and some time my hands swelling up but you just have to get off them a put them up and it would go back down other then that
side effect were not bad I could work  good luck alf203
 
 
 
  P.S   Update today I start chemo, psa jump from 12.38 in june to 17.34 in july since I stop Tak 700 the cancer is on the move it spreed to Three new
spots, they say this should slow it down the cancer, off to the hospital.
 
    Alf 203
 

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 -12.38

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/15/2011 4:31 PM (GMT -6)   
   Alf 203:
I guess I am the new guy on the block(TAK-700) Some days I do stop long enough to put my feet up. and yes they do go down. Right now I take 80mgs of Lassics.
Sorry to hear that your PSA is back up. I have been at zero twice in the last 6 years. Also has been as high as 22.7,
Hang in there.

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/16/2011 9:14 AM (GMT -6)   
Alf203:
Just checking in to see how your visit at the hospital went?
Hope all went as best a hospital visit can go.
Have you ever been on PROVENGE just approved early this yeas?
I hope Med-Care has approved it .

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/16/2011 11:12 AM (GMT -6)   
tarhoosier:
Thanks for the info on TAK-700.
With this chat room I can save my wife (of 45 years) all the small talk and take it out on you guys.
Love hearing from all of you.
When you are on a test trial and the only on at Johns Hopkins, there is nobody to ask any questions to.
It looks like everbody on TAK-700 has Lots of ankle swelling plus a spikes in blood pressure.

President
Wheels for Prostate Cancer Research Inc.
Prostate Cancer Survivor
www.WfPCR.org/

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/18/2011 4:13 PM (GMT -6)   
TAK-700 FROM 49 PACKARD
Can anybody that is on, or has been on TAK-700 give me your PSA stats.
 
Date PSA Testost Cholest Lupron Bone&CT White Cell AST/ALT Potassium
0 - 199 3.50-11.10 37/47 3.6 - 5.2
  Total PSA loss= 16.07 TAK 700          
06/28/11 1.53 down 2.18 177 06/24/11 bone&ct 3.29 26/20 3.7
04/05/11 3.71 down.74 184 04/05/11 bone&ct 3.03 37/40 3.7
03/08/11 4.45 down 2.8
   
02/08/11 7.25 down 1.42 175
01/11/11 8.67 up+1.52 189 01/11/11 3.73 63/79 3.6
01/07/11     bone&ct  
12/14/10 7.15 down5.95 175 3.09 63/76 3.5
11/16/10 13.10 down 4.50 176 2.38  ?5/69
10/19/10 17.60 start tak700 188 3.21 47/52

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 7/19/2011 3:37 PM (GMT -6)   
Tim-from-Maine
Your PSA sounds like mine.
Check the chart above. I am down to 1.53 THANKS to TAK-700 a great drug.
My next visit to Johns Hopkins will be late Sepember (16) I think.
I surely hope they do not end TAK-700. It is a wish come true.
Check me out at:
http://www.wfpcr.org/html/I_live_it.html

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 9/30/2011 2:13 PM (GMT -6)   
 
Just got my Blood work from TAK-700 and it is great.
PSA is 1.04

Date

PSA

 

Cholesterol

Lupron

Bone&CT

White Cell

AST/ALT

Potassium

0 - 199

3.50-11.10

37/47

3.6 - 5.2

Total PSA loss=

16.56

TAK 700

09/20/11

1.04

down.49

188

09/16/11

bone&ct

3.51

30/23

4

06/28/11

1.53

down 2.18

177

06/24/11

bone&ct

3.29

26/20

3.7

04/05/11

3.71

down.74

184

04/05/11

bone&ct

3.03

37/40

3.7


49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 12/21/2011 8:24 AM (GMT -6)   

Hi All:

There was not a Christmas present in the results of my 12/13/2011 PSA.

I had a 63% increase from 1.04 to 1.65

This is my first red flag of the test trial TAK-700.

If I get three consecutive rises (red flags) of least 20% I am out of the trial.

49PACKARD


49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 6/25/2012 3:54 PM (GMT -6)   
Hi all:
 
I ended  TAK-700 first of April 2012 It just stoped working.
I got into a treament called Provenge started May 1, 2012 finished up June 1, 2012.
Will have to wait till Dec to find out if it is working.

BOOGEE
Veteran Member


Date Joined Jan 2012
Total Posts : 550
   Posted 6/25/2012 5:57 PM (GMT -6)   
49packard,

Good luck on your Provenge treatment. Please let us know if it works.
Will keep you in our prayers!

BOOGEE
Age 53
2010 PSA's 6.3, 4.7 5.6
RP open Oct -2011
Stage T1c
Gleason 4+3 left side Gleason 3+3 right side
11 lymp/ no mets.
Perineural invasion present
neg. marg.
Path staging (pt1): pT2c: bilateral disease
PSA Post -Op
1.2 11/2011
1.8 12/2011
3.5 1/2012
2-12Casodex Lupron PSA .03,
5/12 PSA <0.1, T-12
CT, BONE, MRI Neg. for Mets.
F-18/FDG showed 1 met.,spine T-11

49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 6/28/2012 7:41 AM (GMT -6)   
Hi All:

I am doing great.(stay up to 9pm most nights)

I am off most of the meds I had to take with TAK-700.

No furosemide, klor-con, down to 1/4 of blood pressure (118/72 most days) almost no tums.

Waiting for my PSA to start going down, should start in in Sept.

PSA will keep going up for 3 to 4 months till Sept.(I Hope it starts going lower in Sept) It is up from 9.3 to 20.28 today.

 

 

President

Wheels for Prostate Cancer Research, Inc.

Fighting PROSTATE CANCER  With PROVENGE

www.WfPCR.org/


49packard
Regular Member


Date Joined Jul 2011
Total Posts : 135
   Posted 8/24/2012 7:40 AM (GMT -6)   
I am noow on Provenge as of May 1,2012

8/22/2012

On Wednesday I was the guest of Chesapeake Urology for a visit to the Provenge Plant in N.J.

It was a three hour bus trip but all worth it when I got there. You can not image the planning and thought that went into the building. It is many buildings within a building. Each has it own cleanliness, security, and temperature. The back up generators (5 each) have 15 seconds to come on line when a power outage accurses

I got to see first hand all the steps my blood went through to get it ready to put back in me.

Each step has many checks to make sure my blood gets back to me.(50 million) cell are returned each treatment and I went threw three . I could go on all day with the wonders of Provenge.

 

  President

Wheels for Prostate Cancer Research, Inc.

Fighting PROSTATE CANCER  With PROVENGE

www.WfPCR.org/

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