Some Good News For A Change

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Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 10/19/2007 5:07 PM (GMT -7)   
To All My Friends-

I had some good news this week which I'd like to share with you.

In the beginning of August I was fortunate to have my insurance company pay for me to go to M.D. Anderson Cancer Center in Houston. The doc there disagreed with my local (NJ) oncologist about starting chemo immediately, and suggested having CT scans every 6 weeks and doing a "watchful waiting" type thing. I had my next CT scan in September and the consult with my NJ oncologist went something like "the first radiologist saw some new nodules on your lungs, so I looked at the scans with a second radiologist and we didn't see any new nodules". Unacceptable!!!!!

So I had them make up a CD of the scans and I sent it to Houston. I got a four page report back, the gist of which is that there are no new nodules, some of the larger nodules have disappeared and the lesion on my hip has gotten smaller.

I was about to fax the report to my NJ doc, along with a scathing cover sheet, but, my wife asked me to think about it before faxing. And, of course, she's right. I need someone here to order the CT scans on a regular basis, so I didn't send it. But it sure would have felt good if I had.

My reason for this post is to let all of my friends here know of my (at least temporary) good news and to remind everyone that, as Dr. Strum says, "M.D. does not stand for medical deity". And also to remind you that you must take charge of your own trip through this horror and not defer automatically to your physician.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01 AND REMAINS THERE TO THIS DAY
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.
7/2007 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

Post Edited (Gordy) : 10/19/2007 6:10:44 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/19/2007 5:34 PM (GMT -7)   
 Dear Les & Carol,

 

v      The Power of Love (Loving Wife ~ Carol)

 

v      The Power of Friendship (HealingWell's Forum Friends)

Gordy's Corner... :)

Message for Gordy - Our prayers are with you!

 

v      The Power of Hope (Dr. Bernie S. Siegel)

 

v      The Power of Hugs (Lee & Buddy)

 

We will take this “good news” and hold it very close for as long as possible. 

Positives bring Positives…  Know we care about “YOU”….

In Friendship ~ Lee & Buddy


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 10/19/2007 5:36 PM (GMT -7)   
Hey Les,

Great!!! I'm so glad that you are seeing some good things happen. And you are so right about us having to take charge of our own recovery. I would be a drugged up zombie right now if I had accepted my first doctor's opinion.

My best ot you...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 10/17/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started Tri-Mix on 8/7/07.  .02 ml and 50 mg Viagra.  It works!!!
Next PSA and T tests on 1/15/08
 
"Patience is essential, attitude is everything."
 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 10/19/2007 5:48 PM (GMT -7)   
Hi Les. Good for you. Don't take it lying down. Another opinion can make all the difference. It did for me. Take care and get that new vette.

Mika

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 10/19/2007 6:47 PM (GMT -7)   

Gordy:

Thanks for sharing that great news with us - being proactive is the only way to go.  Continue to do well.

Dutch 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/19/2007 7:29 PM (GMT -7)   
Yes, thank you for sharing Gordy. The power of prayer, people and 2nd opinions is a pretty tough team to beat!

Swim
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 10/19/2007 7:35 PM (GMT -7)   
Les,

It was so good to see your post! Good news for you is good news for us...and we all can use that!

Persistance is absolutely necessary in this fight and it can determine what treatment you recieve. There are docs out there who will go over slides, tests, pathology reports, etc. They understand the value of the second or third opinion. Many times all it takes is a phone call to a doctors office or hospital to start the process. It's not hard...it just seems like it is. I was quite surprised with the response I got when calling other physicians in regard to Don's case. It made all the difference to know there was agreement in their opinions. I suppose if there wasn't we would've had other decisions to make...as you have had to do.

It's good for others to see the path that has to be taken sometimes...after all, it's your life we're talking about here. And it is precious.

Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
3 mo. PSA Post LRP Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
09/06/06: 6 mo. PSA: 18.8 Distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
09/05/07: PSA 0.1


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 10/19/2007 7:41 PM (GMT -7)   
Right on, Les!
Hope is a valuable tool. Always keep it by your side. Never allow it to leave your vision. Let it guide you when you have doubts. This news is a reminder to all of us that when all else seems dire, hope will give us our reason to believe we can over come anything.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 10/20/2007 3:49 AM (GMT -7)   
Les,

It is good to hear from you and especially the news of the improvements!

Keep kicking (Well, as your wife suggested , maybe not the physicians...
    ... they are all too human like the rest of us!)
I loved everything about my experience with M.D. Anderson.
One of my relatives is having (occular mets) liver surgery there next week.

Wild horses and boulders of tourquoise for your victories!

CCedar

GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 10/20/2007 6:27 AM (GMT -7)   
Gordy - such great news, really! Not only is there nothing new, but you're seeing a reduction! Like Swim said, your "team" (plus the insurance company) is like a powerful miracle at work.

That's the kind of news that makes you want to hit the road and lay some rubber.
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/06, 4/07 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
PSA test "Un-zero-detectable" on 10/16/07.
If it stays that way for 7 years, recurrence rate drops to 9%.
Future: PSA tests twice-yearly for now.
 


War-eagle
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 10/20/2007 4:42 PM (GMT -7)   

Les,

This is great news. I just want to tell you that I am thinking of you and hope and pray that this trend will continue. We can only pray that a miracle will happen. I know what a monster this is that we are dealing with and we both are handling it in our own way. I, and the rest of the guys and gals here, will always be here for you. I don't believe it will "hit the fan" later. I don't know who said it, "but sometimes you just gotta have hope". So I send you hope.

Love ya brother and keep fighting...........................War Eagle

Walt


Age: 54
PSA 43 7/2005
Biopsy 12/14 Gleason 7 & 9
Divinci 9/2005 - spread to bladder
HT - 10/2005 (Eligard every 6 months)
RT - 10/2005 (38 treatments)
PSA 0.12 to 1.9 2/2007
Bone Scan and CT 4/2007
Casodex 4/2007
Spread to Spine (L4 & T5), rib, and pelvis
Zometa infusions 4/2007
PSA 4.8 8/2007
PSA 4.9 9/2007
PSA 5.4 10/07
 
"I will persist without exception - I will find a way where there is no way"


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 10/20/2007 7:18 PM (GMT -7)   
Thank you all for your good wishes and sentiments.

They are all greatly appreciated.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01 AND REMAINS THERE TO THIS DAY
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.
7/2007 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


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 10/21/2007 8:22 AM (GMT -7)   
Hello Les,

We are certainly glad to hear the good news. I hope that your recovery continues, and there will be more good news to report.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. margins
DaVinci surgery on 02/23/06
Last PSA 08/26/07 @ 18 months "0"


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 10/21/2007 12:31 PM (GMT -7)   
Thanks Glen. But, I'm not counting any chickens just yet.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01 AND REMAINS THERE TO THIS DAY
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.
7/2007 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


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 10/21/2007 6:10 PM (GMT -7)   

I know that you are kind of a pessimist, Les, but this new report is better than a poke in the eye with a sharp stick.  You may end up being one of those guys who lives so long that something else gets you.  If that happens, you win.  Now, about that Corvette.  Don't know what to say.

I think I'm gonna' be in N.J. Tuesday night, but don't know that I can get away.  If my trip gets organized tomorrow, I'll give you a ring.  We need to meet again.  Most of my recent trips have been to middle American, or the left coast.

Anyway, congratulations on the report.  It's a step in the right direction.

Keep Your Mach Up,

Bill


August of 2006, PSA up to 4.2 from 2.7 one year ago. 
October free and total PSA 12% free and 5.0 total.
A month, or so later, 4.7.
Late in the year decide on Image Guided IMRT.
Begin 43 treatments on January 23, 2007 and finish on March 23.
Four month post treatment PSA is 1.9.  (This is a very good result.)
No side, or after effects.  None.
I have aged a year and am now 63.  How did that happen?


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 10/21/2007 6:18 PM (GMT -7)   
Thanks Bill.

I just e-mailed you my work phone number.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01 AND REMAINS THERE TO THIS DAY
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.
7/2007 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

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