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Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3196
   Posted 10/23/2008 4:27 PM (GMT -7)   
My name is Todd and I am 44 years old. I have been diagnosed for 28 months. At the time of my diagnosis my psa was 3216 and the monster had spread to my lungs and my bones. Hormones knocked it on its butt and my psa fell to .09. In the last 7 months psa has gone from .09 to .25 to .44 to .80. Too young to die from this crap. Do I have any options. I have heard about provenge. I have been informed taxol rarely works.HELP

BillSD
Regular Member


Date Joined Sep 2008
Total Posts : 143
   Posted 10/23/2008 5:00 PM (GMT -7)   
Todd,

There are clinical trials underway for abiraterone acetate that look very promising. Unfortunately, it may not be approved for a couple years (2010 or 2011). You may check into joining their trials if your situation merits (and it may well).

There are other options. I am sure some of the members will tell you what they know.

Hang in there, and stay positive.

BillSD
Age 59 at diagnosis (Now 60)
PSA 4.4
05/15/2008 – Biopsy
Gleason 3+3=6
Most cores positive 40% or more, some 100%
Bone scan and pelvic/abdomen CT show no visible metastasis
06/15/2008 – Began two months Casodex 50 mg
07/01/2008 – Trelstar shot (3 month dose)
09/15/2008 – Retropubic Radical Prostatectomy
Pathology: Staging pT2c pN0 MX
Gleason post op: 3+4=7
No discrete tumor mass
Bilateral involvement
No capsular penetration (carcinoma extends into but not through capsule bilaterally)
Perineural tumor invasion (PNI): present
Perineural margin: Free of carcinoma
Bladder neck: Free of carcinoma
Distal (Urethral) Margin: Carcinoma present
Seminal Vesical: None present
Lymph Nodes: 18 nodes free of metastatic carcinoma
10/13/2008 - PSA <0.1 - disclaimer: I had HT, so...
12/01/08 - Begin 35 treatments EBRT (adjuvant radiation because of concern for positive distal margin and PNI)
 
 
 


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 10/23/2008 5:07 PM (GMT -7)   
Todd-

I have metastases to my lungs and pelvis and am in the middle of a clinical trial. I mentioned it on another forum and was asked for more details in the hope it could help others. What follows is my post on the other forum:

The drug is made by Bristol-Myers Squibb (BMS) and is called Sprycel
(generic: dasatinib). It has proved to be almost miraculous, and is
FDA approved, for patients suffering from chronic myelogenous leukemia
(CML) and Philadelphia chromosome-positive acute lymphoblastic
leukemia and who have failed after initially doing very well on
Gleevec.

There are only about 5,000 new diagnoses of those diseases per year,
and BMS is hoping (quite properly, I believe) that Sprycel will be
effective against solid tumors, also. On biopsy, it was discovered
that the cells in my lung nodules share an 'src' protein with the
leukemia patients. This protein aids the cells in reproducing
uncontrollably.

Currently there are a number of trials , for all kinds of cancers. My
trial has me taking two 50 mg tablets of Sprycel every day and having
infusions (iv) of the standard drugs Taxotere and Prednisone every
twenty-one days. I'm to have six infusions altogether - I had number
four last week.

Just before I had cycle number three, I had CT and bone scans which
were compared to the scans done just before I started on the meds.
The scans showed that the nodules on my lungs have been reduced in
number and many of the remaining nodules are smaller compared to the
earlier scan. The bone scan shows no change in the lesion on my
pelvis - also good news because it had grown during the period from
Feb. 2008 to June 2008.

Most of the links shown in Google for Sprycel or dasatinib relate to
CML. One of the first ones I followed was Jerry Mayfield's diary at
http://www.newcmldrug.com/diary_interface/Results/Diary.asp. Although
he suffered from CML, I was intrigued by his diary, although I admit
to not understanding all the technical terms related to his disease.
Jerry was one of the first participants in a Sprycel trial, which was
done at M.D. Anderson Cancer Center in Houston. Perhaps part of my
fascination with Jerry's account has to do with the fact that my
medical oncologist, Dr. John Araujo is also at Anderson and is, in
fact, the lead investigator of the trial in which I'm enrolled. I'd
recommend reading Jerry's diary because not only is it very well
written, I found it very uplifting and hopeful - something of which
I'm in dire need. Fortunately for me, the trial is also being done in
Nyack, New York, which is about seventy miles from my home. It is my
understanding that these same trials are being done in many countries
around the world.

I hope this has been helpful. Feel free to ask any questions you'd
like.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.

Post Edited (Gordy) : 10/23/2008 6:10:02 PM (GMT-6)


DanielleS
Regular Member


Date Joined Jul 2007
Total Posts : 57
   Posted 10/24/2008 8:12 AM (GMT -7)   
Todd - has your doctor discussed any "second line" hormone therapy such as high or low-dose Ketoconazole?  My husband has had good luck with this after PSA started to rise on Lupron. 

debib
Regular Member


Date Joined Jun 2007
Total Posts : 35
   Posted 10/24/2008 4:08 PM (GMT -7)   

Todd,

Of course we understand....Ron was diagnosed a few months after our last child left the house and we had the world by the tail so to speak...some extra money, bought a couple of harleys, a RV, bought a cabin in the mountains etc....now, his PSA has gone from 0 to 12 in a few months and our oncologist tells us he is sorry...SORRY!!  I don't know what to do, don't really have a plan B...I do find comfort when all is wrong in my world by watching the video of the dying professorVIEW IMAGEhis journey was remarkable...remember we are all here for the same reason, trying to live or help someone live.

Debbie


Age at DX 56 Good Health went for routine physical
PSA 49!
6/06 Biopsy Gleason 5+4=9
12 samples all positive
7/06 lymph node biopsy-3 samples all positve
Told surgery was not an option
8/06 started Zolodex and Cassodex
9/06 PSA 2.2
12/06 PSA 3.8
3/07 PSA 0.78
6/07 PSA 0.23
09/07 PSA 0.12
01/08 PSA 0.28
03/08 PSA 3.49
05/08 PSA 7.5
06/08 PSA 5.7
07/08 PSA 7.0
08/08 PSA 8.0
09/08 PSA 10.0
10/08 PSA 12.0 Stopped Cassodex


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 10/27/2008 7:46 AM (GMT -7)   

Todd,

Please email me if you would like to communicate.  I may be able to give some encouragement.  My address is available on the side bar.

Gene214


PC diagnosed 12-06 @ age 63
Radical open removal 2-14-07, Gleason 3+3=6
Removal of stricture 6-07, incontinence continues
Scheduled for AUS & IPP 05-08
Surgeon cancelled one day pre-surgery, due to cardiac concerns
Nuclear stress 5/13/08
3 stents 5/27
AUS, IPP implanted 07-16-08
AUS, IPP was activated on 08-18-08.  They both work!
10-20-08 went back to surgeon for a follow-up.  Both devices are working very good and surgeon was very pleased that I am very pleased.
 


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3196
   Posted 10/27/2008 10:11 AM (GMT -7)   
Debbie,
My heart goes out to you and your husband. SORRY! I feel your pain. There is more out there and we must all share what works and what does not. Remember our doctors are only practicing medicine.
Look into (pau d' arco.) I take ten vegie caps a day. It may not help but it wont hurt and my oncologist told me so. I think it helps. It is the inner bark of a tree that grows in Brazil. It has many anti-cancer property's. It is cheap. If you a box of 1000 caps it is 20 bucks plus 20 shipping..If you order 2000 it is 40 bucks and they wave the shipping. To me its a no-brainer herbspicetea.com is the web-site I use
september 05 Diagnosed with sciatica as the cause of the extreme pain I was in
November 05 Chest xray for pnuemonia revealed a pulminary nodule. Advised not to worry
June 06 After urinating blood for 2 months advised to have a psa test. 3216. chest xray revealed multiple lesions in each lung. Bone scan revealed pelvic bone affected. Biopsy 3-4=7 gleason scale.
Placed on lupron and casodex. Within a year psa had fallen to under 3.0
Feb 08 psa-.09 may 08 psa-.25 july-.44 sept.-.80
Doctor advised no meat but wild game, fish, chicken, and turkey. Advised to eat lots of vegies
10/27/08. P.S.A. 1.34


debib
Regular Member


Date Joined Jun 2007
Total Posts : 35
   Posted 10/28/2008 3:39 PM (GMT -7)   

Todd,

I thank you!! 

I am glad you are here and one thing I forgot to say to you ...don't forget to do ALL the things you would put off because of time, work or money...just do it!!  we are packing the next 15 years in as fast as we can and one blessing that has come out of all of this is ...I don't sweat the small stuff anymore...I think I would have missed out on so much of life if Ron hadn't been diagnosed ...the cancer is going to do whatever it's going to do ...all I can do is the leg work and research...thank goodness for the information that is available out there and people like you.

Take Care and email anytime.

Debbie


Age at DX 56 Good Health went for routine physical
PSA 49!
6/06 Biopsy Gleason 5+4=9
12 samples all positive
7/06 lymph node biopsy-3 samples all positve
Told surgery was not an option
8/06 started Zolodex and Cassodex
9/06 PSA 2.2
12/06 PSA 3.8
3/07 PSA 0.78
6/07 PSA 0.23
09/07 PSA 0.12
01/08 PSA 0.28
03/08 PSA 3.49
05/08 PSA 7.5
06/08 PSA 5.7
07/08 PSA 7.0
08/08 PSA 8.0
09/08 PSA 10.0
10/08 PSA 12.0 Stopped Cassodex

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