Rapidly rising psa

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Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 10/17/2009 3:14 PM (GMT -6)   
Hi all,
 
We have been reeling with shock for almost two weeks and so I thought I would reach out to all of you for any advice.
 
My husband went to get the results of his psa test a week last tuesday. They had been rising somewhat, from 1.9 to 2.5 in the space of three months.
 
Well, his psa has gone up to 8.3 - massive in the scheme of things! His consultant now says he should stop taking Casodex, whilst mantaining the Zolodex, and that he should get a CT scan to see if the cancer has gone to his lymph nodes.
 
He is also talking about introducing chemo in the next 6 - 12 months.
 
We are both really scared! Knowing how treatment varies in the U.S compared with here in the U.K (and that survival rates are much better in the U.S than the U.K!!) are we / the consultant missing anything? Should my husband be trying anything else other than just stopping a treatment (the Casodex)
 
If there is anyone out there with any advice or any messages of hope, we are a family which could really do with either
 
Thanks, Julia
Age - 59
Dianosed - July 07
Gleason 8 (4+4)
PSA - 17.7
Bone Scan - August 07 revealed mets to spine, neck, rib, shoulder and pelvis
MRI - August 07 revealed seminal vesicle involvement
Treatment - Zolodex started on August 10th
First PSA  November 7th - 2.3
Second PSA February 7th - 1.1
Third PSA  May 5th 2008 - 0.8
Fourth PSA September 3rd - 1.7
As of 6th January, PSA up to 2.1 Casodex now added to regime
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 10/17/2009 4:54 PM (GMT -6)   
What a brutal piece of news. Out hearts go out to you and your husband. You might look at the thread "Hope for the advanced brothers" about drug trials being done in England that seem to show good promise, perhaps there is a place for your husband there.

Our thoughts and prayers go out to you both.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/17/2009 5:22 PM (GMT -6)   
Julia, so very sorry to hear about your news. No way to put a good spin on that. There are still options, and there is always hope in a case like this. I wish the best to both of you, and hope you can regain some hope and confidence as you move forward from this point.

Please keep us well posted.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 10/17/2009 8:52 PM (GMT -6)   
Julia, Sorry to hear the bad news. This is not what any of us like to hear about a PCa brother. I can't offer any advice but, I can say prayer for your husband and you.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 10/18/2009 10:43 AM (GMT -6)   
I to am sorry to hear this news. Yes there are plenty of options at this time for you to consider. Take time to educate yourselves and most of all stay positive. I am still a firm believer that attitude plays a huge roll in our healing.
I to will pray for you. Please stay in touch with us, we care very much for your well being

peace and love
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
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

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

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%


Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 10/18/2009 1:17 PM (GMT -6)   

Thank you all for your good thoughts and prayers, they are much appreciated and welcomed by us both.

The trial going on in the Uk does sound promising, but I think it is for people who have already had chemo and where that is no longer containing the cancer. It might, hopefully be available further down the line when the time comes.

Can anyone explain the rational behind stopping one of the hormone treatments? It seems like a backward step to us but we didn't say too much during the consultation as we were both in shock.

I am soo with you about attitude Dale, I have always been an irritatingly positive person, but Rick is the opposite (it works pretty well most of the time ) but right now, I am finding it difficult to be positive for him as the consultant did paint quite a bleak future

Thank you all for caring


Age - 59
Dianosed - July 07
Gleason 8 (4+4)
PSA - 17.7
Bone Scan - August 07 revealed mets to spine, neck, rib, shoulder and pelvis
MRI - August 07 revealed seminal vesicle involvement
Treatment - Zolodex started on August 10th
First PSA  November 7th - 2.3
Second PSA February 7th - 1.1
Third PSA  May 5th 2008 - 0.8
Fourth PSA September 3rd - 1.7
As of 6th January, PSA up to 2.1 Casodex now added to regime
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/18/2009 1:56 PM (GMT -6)   
Missy, it might just take some time to take in the bleakest portion of the news and let it fully absorb. People absorb and resolve bad news in so many different ways. Once that is done, it will be easier to look out again and see what options there are, or might be available.

Just feel so bad for the two of you. But as the advanced brothers here at HW will tell you, never give up hope.

I sincerely hope a solution can be found for your husbands situation.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 10/18/2009 7:14 PM (GMT -6)   
There is a great book that I would like to recommend. It is called "A Reason for Hope". It makes sense out of our battles with cancer. If you would email me your address I would gladly send you a copy. I have a Christian Cancer support group called Champions of Hope and that is the book I use.

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
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

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

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%


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 10/18/2009 7:25 PM (GMT -6)   
Look into alternatives like these, that can and do work even on hormone refractory patients (how long and how well varies like the craziness of PCa to begin with). You might not want to jump into chemo at this time, perhaps. Your possible choices and these are just a few of many that do exist:

#1-Emcyt(will have some side effects to deal with),
#2-Estradiol patches (cheap, side effect minimal),
#3-DES (cheap, effects can be minimal)
#4- Ketoconazole (has some side effects, usually works for some period of time)
Do google search for hormonerefractory PCa (Dr. Strum has a website listing many things)

Dr. Fred Lee uses Emcyt on his own body, as a PCa patient (fyi)
Dr. Premoli (Argentina-used Estradiol patches on many patients, with good results, no clots)
If you want to know alot more about DES, send me an email, click on my name (zufus).

Get ready to fight and you can have quality life along the way.
 "I wouldn't join a club that would have me as a member" (Groucho Marx)


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 10/18/2009 11:07 PM (GMT -6)   
Julia, rotten news.  You and Rick are on my prayer list.

You said, " I am finding it difficult to be positive for him as the consultant did paint quite a bleak future." I don't know what the situation is in the U.K. but here in Canada you can't buy a laxative without side effect warnings that would scare the bridle off a Trooping The Colours Horse. When I went in a few years ago to have a wisdom tooth out I asked the lady at the desk if she had the ambulance on speed dial the warnings were that dire. While it would be wrong not to take the consultant's warnings seriously, as difficult as it must be to do you also probably need to put them into context. And, once you do that, I suspect a positive attitude will be easier to adopt. That said, I can't imagine how frightening and upsetting this must be for you both.

I'll be watching for your update post.

Sheldon AKA Sleepless


Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week.    


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/19/2009 10:17 AM (GMT -6)   
Hi Julia,
Along with what others have said, we send our love and prayers as well. After Casodex, if I went that way, I was looking into Keto and Nilandron. Also a clinical trial would be a good course of action. As you said many won't be offered until after Chemo, but perhaps early Chemo in worth a look as well. Stay positive dear, there is still more things to do. And as always, stay close...

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My Journal is at
My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!


DanielleS
Regular Member


Date Joined Jul 2007
Total Posts : 57
   Posted 10/20/2009 11:19 AM (GMT -6)   
Hi - please ask your doctor about trying Ketoconazole.  My husband has been on low-dose Ketoconazole plus Hydrocortisone for over a year now after PSA began to rise on Zoladex.  His PSA has fallen to the lowest level of any treatment and he has few if any side effects. 

Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 10/20/2009 1:53 PM (GMT -6)   

Oh thank you all for all your advice, practical and emotional. It means so much. I have made notes of all the treatments etc mentioned by everyone and will be sure to check them out.

Dale, I am one of your Facebook buddies so would be grateful if you could send me that link.

Your kindness and support is invaluable, all of you

Julia


Age - 59
Dianosed - July 07
Gleason 8 (4+4)
PSA - 17.7
Bone Scan - August 07 revealed mets to spine, neck, rib, shoulder and pelvis
MRI - August 07 revealed seminal vesicle involvement
Treatment - Zolodex started on August 10th
First PSA  November 7th - 2.3
Second PSA February 7th - 1.1
Third PSA  May 5th 2008 - 0.8
Fourth PSA September 3rd - 1.7
As of 6th January 2009, PSA up to 2.1 Casodex now added to regime
6th October 2009, PSA up to 8.3
C.T scan booked for 19th October 2009 to establish whether cancer has spread to lymph nodes
 


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 10/20/2009 2:27 PM (GMT -6)   
Julia,
I don't have any advice to offer but to let you know that I will be praying for your situation. I had my first psa drawn yesterday (Post davinci Surgery) and am awaiting the results.

Larry
Age at diagnosis 54, PSA 5.1
Biopsy 04/08 12 cores, 5 positive
Gleason 3 Cores at 4+3=7, 2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
 
Post Surgery - Dr. Spared 100% of Nerves on the left side.
Estimated that 50 - 70% of the nerves were spared on the right side.
 
Final Path report
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear
Positive Margin Noted in Right Apex


Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 10/20/2009 2:55 PM (GMT -6)   

Hoping all is good for you Larry, waiting is the hardest part - thank you for your kind wishes, take care

Julia


Age - 59
Dianosed - July 07
Gleason 8 (4+4)
PSA - 17.7
Bone Scan - August 07 revealed mets to spine, neck, rib, shoulder and pelvis
MRI - August 07 revealed seminal vesicle involvement
Treatment - Zolodex started on August 10th
First PSA  November 7th - 2.3
Second PSA February 7th - 1.1
Third PSA  May 5th 2008 - 0.8
Fourth PSA September 3rd - 1.7
As of 6th January 2009, PSA up to 2.1 Casodex now added to regime
6th October 2009, PSA up to 8.3
C.T scan booked for 19th October 2009 to establish whether cancer has spread to lymph nodes
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 10/24/2009 1:08 PM (GMT -6)   
Hello Miss Julia,
 
I do not, unfortunately, have any advice for you but I came across an interesting post on another PCa website. There is a company in the UK looking for volunteers for a clinical trial to try a vaccine that may have some impact  on tumorous cancers. The company is Genelux. Thier website is Genelux.com and from there you may access the clinical trials. Look for GL-ONC1. As I understand it they are actively recruiting for this trial right now. I do not know if this of interest to you or your husband but thought that I would pass along the information.
 
Best of luck to the both of you.
 
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones 
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
 
 
 


Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 10/24/2009 1:46 PM (GMT -6)   

Thank you Don, I will check out the website right away.

Just wondered if anyone can tell me why the consultant should decide to stop one of the treatments (Casodex) is it supposed to confuse the tumours into submission or something? Not quite clear in my head about this.

Cheers, Julia


Age - 59
Dianosed - July 07
Gleason 8 (4+4)
PSA - 17.7
Bone Scan - August 07 revealed mets to spine, neck, rib, shoulder and pelvis
MRI - August 07 revealed seminal vesicle involvement
Treatment - Zolodex started on August 10th
First PSA  November 7th - 2.3
Second PSA February 7th - 1.1
Third PSA  May 5th 2008 - 0.8
Fourth PSA September 3rd - 1.7
As of 6th January 2009, PSA up to 2.1 Casodex now added to regime
6th October 2009, PSA up to 8.3
C.T scan booked for 19th October 2009 to establish whether cancer has spread to lymph nodes
 

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