psa rsing, support needed

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kak
Regular Member


Date Joined May 2009
Total Posts : 85
   Posted 11/24/2009 1:03 PM (GMT -6)   
My husband just got his psa results and they weren't good. His psa went up from 1.19 to 4.65. He has been on lupron for approx. 2 years and when his psa went up in the summer casodex was added and it went down for a little while , but now is up higher than ever. He also had raqdiation 2 years ago in October.

We are both in shock as we thought things were going fine, but as you can see it wasn't. He has had a rough go as his oncologist has taken a leave so he really doesn't have a doctor right now. He will be referred to a new oncologist and will hear tomorrow when he will see him.

The oncologist said, this summer, he would be referred to a chemo oncologist if his psa has risen. He said salvage surgery was not an option. We found out today that a referal will take at least 3 to 4 months. Wow talk about everything piling up.

Can anyone out there help us with questions to ask the new oncologist we just don't know what to ask and we are just in shock. Is there anyone out there that has gone this route that would share their experience.

I know we can say take it day by day etc. but we need to find some hope.
AGe 54 diagnosed March of 2007
PSA 107
Gleason 8
Stage T2 or T3 (weren't sure was out of prostate capsule)
Bone scan march 2007 and Aug 2008 both clear
ct 2007 clear
started casadex/lupron March of 2007 (casadex only for 4 months)(lupron for 2 yrs)
Aug 2007 had 37 treatments (also radiated lymph nodes)
psa spr 07-107,went down to .34 by Dec 08, March 09 0.7, May 1.54
 
 


Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 11/24/2009 1:13 PM (GMT -6)   
I recommend you get the book, Beating Prostate Cancer, by "Snuffy" Myers.

http://www.amazon.com/Beating-Prostate-Cancer-Hormonal-Therapy/dp/0967612926

It is pretty much devoted for men who are on hormonal therapy.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 11/24/2009 1:17 PM (GMT -6)   
When on HT if psa doesn't go to .05 and stay there for a few months it means that a high population of androgen independent PC cells are in his system. His oncologist can start a series of other hormone meds or go to chemo therapy. Zufas can possibly chime in as to the other meds that could be tried such as DES. Although this is not good news it is also not the end of the world as other med may controll the disease. The PC is beyond cure and the strategy now is to control it or slow it's growth for a number of years.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 11/24/2009 3:18 PM (GMT -6)   
Sorry to hear that. Where do you live? Is there a teaching hospital near you. They often have some smart doctors there. I go to the Univ. of Mich. Med. Center for anything very serious.
 
Perhaps even Mayo or John Hopkins or MD Anderson or Sloan Kettering? Of course that depends on finances and insurance. I don't know your circumstances. It might be worth pursuing!
 
Mel
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future. Just in: BAD NEWS: PCA-3 = 75.9! Cut-off is 35. Biopsy scheduled for 11/30


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 11/24/2009 4:11 PM (GMT -6)   
kak,

I am sorry hear of your husband's current condition, and while it would be hard to put a good spin on things, there is still reason to hope. Some of JohnT's suggestions are what you need,, that and for your husband to get hooked up with the right kind of doctor as soon as possible. Please keep us posted of his journey onward. Best to the both of you.

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
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/24/2009 8:06 PM (GMT -6)   
You have more possible hope than you know about, there are alot of possible therapies using drugs against even resistant or refractive PCa (called- hrpca for short)= hormone refractive prostate cancer...the main hormone drugs stop working to control psa levels (lupron-zoladex, casodex and there equals).

Drugs that are known to work against HRPCa: this is just a short list- ketoconazole, estradiol patches (Dr. Premoli has many patients using these without any serious side effects and with good results), DES (man made estrogen): as crazy as it sounds it kills PCa directly via apoptosis even on hrpca cells, does not ruin bone density and works and costs about nothing=no patents a compounded drug $130-200 per year...out performed my ADT3 drugs that were around $13000 a yr. in 2003 (you can use 1-mg safely and it even works in lesser dosages..I have a friend whom confirmed that suspecion I had on fractionalizing), emcyt is another and may have risker side effects (used by Dr. Lee on himself for his own PCa). Estradiol patches are very cost efficient also. There are many other drugs that should work too, the big question is how long and what effects. I used and use DES intermittently for around 4 yrs. now with superior reslults over the 'norm' ADT1-3 drugs, little to zero side effects (priceless after 2 yrs. of ADT3) and so far is still working. The ADT3 drugs failed around 4 yrs. ago, did not stop rising psa levels, small increases but I measured them monthly and bi-monthly with consectutive rises...upon starting DES with Lupron in me still, it stopped the hot flashes and sweats, etc., fast and psa dropped and stabilized within 2 weeks it worked. Worked so well I went off all drugs including this for almost 2 yrs. before psa started back up, resumed this and worked again  (intermittent use) thus far.

Apparently to some degree PCa while it mutates and/or survives probably from its stem cells that don't get killed off, can be fooled into having its receptors...accept or take on different drugs and even some drugs once ineffective and actually work a second time (again) in some cases and this has been witnessed and used by some of the leading oncologist doctors, to reintroduce certain drug therapies.

Dx-2002 (ominous type stats-total urinary blockage-survivor towards 8 yrs. in Feb-Mar)

Post Edited (zufus) : 11/24/2009 7:13:15 PM (GMT-7)


kak
Regular Member


Date Joined May 2009
Total Posts : 85
   Posted 11/25/2009 9:10 AM (GMT -6)   
We are being sent for a bone scan and ct scan, but will not be able to get into a oncologist for 3-4 months. He has me remaining on the lupron/casodex. This Des sounds interesting. Is this something your oncologist suggested or is it something you researched?
AGe 54 diagnosed March of 2007
PSA 107
Gleason 8
Stage T2 or T3 (weren't sure was out of prostate capsule)
Bone scan march 2007 and Aug 2008 both clear
ct 2007 clear
started casadex/lupron March of 2007 (casadex only for 4 months)(lupron for 2 yrs)
Aug 2007 had 37 treatments (also radiated lymph nodes)
psa spr 07-107,went down to .34 by Dec 08, March 09 0.7, May 1.54
 
 


DanielleS
Regular Member


Date Joined Jul 2007
Total Posts : 57
   Posted 11/25/2009 10:39 AM (GMT -6)   
Please ask about Ketoconazole.  My husband's stats were similar to yours.  When PSA began to rise on Lupron, he started low-dose Ketoconazole plus Hydrocortisone.  This regimen worked very well for a year and a half with few or no side effects.  PSA recently began to rise and Avodart was added to his meds.  Last PSA was down two points. 
 
I would strongly recommend not waiting three to four months before begining treatment - any treatment is best begun when the PSA remains low. 
 
Good luck to you.

kak
Regular Member


Date Joined May 2009
Total Posts : 85
   Posted 11/25/2009 6:56 PM (GMT -6)   
Hi DanielleS can you tell me did they take your husband off the lupron when they added Ketoconazole plus Hydrocortisone? Also can you tell me when you say low-dose what that mean in terms of actual dosage?
I appreciate your help.
AGe 54 diagnosed March of 2007
PSA 107
Gleason 8
Stage T2 or T3 (weren't sure was out of prostate capsule)
Bone scan march 2007 and Aug 2008 both clear
ct 2007 clear
started casadex/lupron March of 2007 (casadex only for 4 months)(lupron for 2 yrs)
Aug 2007 had 37 treatments (also radiated lymph nodes)
psa spr 07-107,went down to .34 by Dec 08, March 09 0.7, May 1.54
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/26/2009 10:11 AM (GMT -6)   
I was watching this thread and hoping Bob (Zufus) and others would chime in and they have. There is still plenty of hope and plenty of options. You guys are writing a new chapter in the book of life but you are not ending the book. Stay positive and diligent in your fight against this disease. Keep us posted as to how you feel and what you are thinking. Everyone here cares and shares in your joys and sorrows.
Thanks for sharing
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%


JoeyG
Regular Member


Date Joined Jul 2009
Total Posts : 162
   Posted 11/30/2009 11:13 AM (GMT -6)   
If I am not mistaken, DES has proven to have an adverse impact on those with heart conditions. However, perhaps the low dosage that Zufus is/was taking, may lower the negative impact.  Zufus is tribute to the belief  that all options should be considered in starving the monster. 
Age -57; Diagnosed 10/05 PSA 13.4 GS 9 Organ confined (T2B)
Cryoablation 4/06 Allegheny Hosp-Dr Ralph Miller (Cohen/Miller)
Post Cryo Nadir 8/06 0.2
Rising steadily to 0.7 4/09 :-(
Steady at 0.7 (7/09) (Pomegranate???)
Looking to take next steps soon
Hoping to qualify for salvage cryo or radiation


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/30/2009 12:59 PM (GMT -6)   
Thanks Joey G, some people may not be able to take certain drugs if they have certain risk factors as to heart or high clotting factors and such things. Journal article from Nov. 2003 on DES is saying 1-mg in general is safe and has alot of pluses for the patient compared to the LHRH drugs and does work against refractive (hrpca), works when Lupron-Zoladex etc. stops working. How long is always the next question. Been on/off it for 4yrs. intermittently with results.
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