will PSA rise after getting off hormones?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

law69007
New Member


Date Joined Nov 2010
Total Posts : 12
   Posted 11/25/2010 1:48 PM (GMT -6)   
i have been on Lupron for almost one year and will be taken off it to play a wait and see approach..my PSA is down to .02 i had 40 radiation treatments prostate bed...had radical robotic prostatectomy jan 1st of this year..were not able to spare left side nerves had metastasis to c3, T6 left illiac crest and right acetabelum... will be doing targeted radiation zaps to those spots which are now all quiet no activity.. anyone out therre with similar situation? how long can i expect the PSA not to rise? is it possible that it wont rise again? if it does what treatments have you had? same hormones or different approach!

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/25/2010 4:57 PM (GMT -6)   
I can only speak for myself and the answer would be yes. When I stopped ADT3 my doctor told me that my PSA would likely rise some over the next couple years and probably level off at or below 1. Well it has been .7 for the last two PSA test so I am still going to wait it out a few more months to see what happens.

peace to you
Dale

mycroft
Regular Member


Date Joined Oct 2010
Total Posts : 54
   Posted 11/25/2010 5:26 PM (GMT -6)   
"law:"

Are you being treated by a real cancer specialist, a medical oncologist? If so, does (s)he have extensive experience with PCa?

Your 0.02 PSA is excellent; fits the definition of "undetectable."

According to one of the leading specialists in PCa, med onc Stephen B. Strum, MD, a patient should have an undetectable PSA for at least one year on treatment before considering a suspension. It's called IADT (Intermittent Androgen Deprivation Therapy).

When the PSA begins (probably but not certainly) rising again, the ADT is restarted. The "off" time varies.

Questions:

(1) was surgery prescribed for you when you had known mets at C3, T6, L iliac crest, and R acetabulum?

(2) what was your Gleason score at dx?

(3) what was your PSA at dx?

As above, it is possible that PSA might not rise again, but don't bet your life on it.

ANECDOTE alert: I can, with fear and trembling, give you this personal experience. DO NOT rely upon my story to make any treatment decisions! What helps me may harm you, and vice versa.

I have been on a regimen of IADT for about four years. I have used Trelstar (similar to Lupron), plus Avodart, staying on Avodart during "off" periods. Inevitably, PSA rises because this is not a curative treatment; there is no such thing at this stage. It's called a "vacation" because testosterone recovers (yee-haw!).

Some add Casodex/bicalutimide to the mix, (ADT3).

When PSA (I have a 28-day testing cycle) rises to my trigger point, I restart the ADT.

At some point, the ADT might cease to be effective. That's when the patient educates himself, consults with his oncologist, tries to propitiate his gods, and selects the next treatment.

There is a great deal to learn, and I strongly recommend the following sources of reliable and unbiased information:

(a) The authoritative website of the Prostate Cancer Research Institute (PCRI) at http://www.prostate-cancer.org/pcricms/

(b) _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), Barnes & Noble, and bookstores. A lifesaver, as I very well know.

law69007
New Member


Date Joined Nov 2010
Total Posts : 12
   Posted 11/26/2010 2:05 PM (GMT -6)   
Hey myctoft thanks for reply.... I am with sloan Kettering hospitL with a leading prostate oncologists dr. Howard Scher ... My metastasis surfaCed a month after prostatectomy... I am comming off lupron dec 31 a year after starting it... I was told that taking Avodart might hinder future treatment options and he recommends against it... We are going to cyber knife the lesions on bones with 1-2 treatments to kill the cancer there so it does not return.
I'm taking many supplements recommended by . Dr. Charles "snuffy" myers whom I also consulted in VA. Look him up read his book and seek him out!!!! Please give me input

mycroft
Regular Member


Date Joined Oct 2010
Total Posts : 54
   Posted 11/26/2010 4:35 PM (GMT -6)   
law69007 said...
I am with sloan Kettering hospitL with a leading prostate oncologists dr. Howard Scher ... My metastasis surfaCed a month after prostatectomy... I am comming off lupron dec 31 a year after starting it... I was told that taking Avodart might hinder future treatment options and he recommends against it... We are going to cyber knife the lesions on bones with 1-2 treatments to kill the cancer there so it does not return.
I'm taking many supplements recommended by . Dr. Charles "snuffy" myers whom I also consulted in VA. Look him up read his book and seek him out!!!! Please give me input


Dr. Scher is well-known. Why he believes that Avodart (dutasteride) "might hinder future tx options" mystifies me.

Its "label" use is to reduce the size of the prostate by ~50% when treating BPH (Benign Prostatic Hyperplasia).

What we as PCa patients are interested in is this "side effect:" It is a selective inhibitor of both the type 1 and type 2 isoforms of the steroid 5α-reductase, an intracellular enzyme that converts testosterone to dihydrotestosterone (DHT), which is many times as active as testosterone in nourishing PCa cells. I use it, and so do (probably) thousands of our brothers. I'd be very interested to know why Dr. Scher takes that position; what tx options?

law69007
New Member


Date Joined Nov 2010
Total Posts : 12
   Posted 3/12/2011 9:42 AM (GMT -6)   
hey Mycroft...how do you determine your cut-off point to start ADT again>?what helps determine this? could you pleqase respond?
45 yrs old....yes you read it correct!!!!
Gleason 9, PSA 51 before robotic prostatectomy Jan 2010, left nerves not spared
stage 4, metastasis to C3, T6, left iliac crest, right acetabulum
40 radiation treatments, on Lupron and casodex since surgery
presently PSA .02 PET scan shows no activity all quiet..
CANCER is just a word!!!!!! we are all warriors!!!! have faith in new developments of drugs!!

law69007
New Member


Date Joined Nov 2010
Total Posts : 12
   Posted 3/12/2011 9:49 AM (GMT -6)   
can anyone out there offer me any hope or information??? i have been off hormones since december 28,2010.... Had Pet scan February 23rd along with blood work.. Pet scan shows all quiet to my lesions i had in spine and hips with no FDG uptake and no new activity. however, my PSA on february 23rd showed a .29.... after being under a .05 for almost a year and being on hormones during that time. my PSA taken again March 11, 2011 now shows a .7
i am rising rapidly almost doubling every 2 weeks. i am waiting to see my medical oncologist next week to discuss what next? P.S. already have done 40 radiaition treatments to prostate bed and spot treatments to spine at C3 , T6 and L1.. your thoughts and advice is well appreciated!
45 yrs old....yes you read it correct!!!!
Gleason 9, PSA 51 before robotic prostatectomy Jan 2010, left nerves not spared
stage 4, metastasis to C3, T6, left iliac crest, right acetabulum
40 radiation treatments, on Lupron and casodex since surgery
presently PSA .02 PET scan shows no activity all quiet..
CANCER is just a word!!!!!! we are all warriors!!!! have faith in new developments of drugs!!

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7213
   Posted 3/12/2011 10:10 AM (GMT -6)   
Law:
 
I sent you an email.
 
Mel

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/12/2011 10:16 AM (GMT -6)   
Mycroft- nice job for information. Do read my thread on Pathogenesis-Dr. Bonkhoff weblink  w/photos explains plenty on PCa totality of issues.

Post Edited (zufus) : 3/12/2011 9:40:59 AM (GMT-7)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 3/12/2011 11:49 AM (GMT -6)   
Law,
There is about a 30% chance that your psa will never rise. The attached vidio that Mel posted is an excellent overview of what is currently available if HT does fail at some point.
http://www.prostateforum.org/speaker.cfm?sid=6
Anyone on HT or that has advanced PC should be familiar with the treatments that are available and their effectiveness.

JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

ralfinaz
Veteran Member


Date Joined Jan 2011
Total Posts : 735
   Posted 3/12/2011 11:53 AM (GMT -6)   
Hi Law,
You have an aggressive cancer at a very young age. Ask for a testosterone test. Given that all your imaging tests show no activity, you are left with an increasing PSA as your main guide. Because of your high Gleason Score, you might want to check a couple of more markers:
Prostate Acid Phosphatase (PAP) is an marker for PCa activity in bone
Chromogranin A (CGa) is a marker of neuroendocrine disease.

Given the rapid doubling PSA time after localized and salvage treatment; androgen deprivation and spot RT to bone mets, it seems reasonable to start maximal androgen blockade (MAB). That is a combination of LHRH + antiandrogen + a 5-alpha reductase inhibitor to slow down disease progression.

Stay positive and never, ever give up!

RalphV
Phoenix, Arizona
Surviving prostate cancer since 1992. RP; Orchiectomy;
GS (4 + 2); bilateral seminal vesicle invasion; tumor attached to rectal wall. Last PSA September, 2010: <0.1 ng/ml
Laughter is the best medicine!

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3787
   Posted 3/12/2011 1:19 PM (GMT -6)   
Gleason 9, metastasis to the bones, that's a pretty tough prognosis..In Dr. Walsh's book, somewhere around page 479 there is a chart that predicts survival rates for advanced cases like this..
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

mycroft
Regular Member


Date Joined Oct 2010
Total Posts : 54
   Posted 3/12/2011 2:23 PM (GMT -6)   
law69007 said...
hey Mycroft...how do you determine your cut-off point to start ADT again>?what helps determine this? could you pleqase respond?


There was little science involved. I simply selected the level above which I don't want my PSA to rise more by instict than anything else.

Post Edited (mycroft) : 3/12/2011 12:26:56 PM (GMT-7)


law69007
New Member


Date Joined Nov 2010
Total Posts : 12
   Posted 3/12/2011 6:08 PM (GMT -6)   
Anyone have any thoughts on oxygen therapy and a pure vegetarian diet with only fish....?? Anyone else know where I may find similar cases like mine and what life expectancy they had after prostatectomy
45 yrs old....yes you read it correct!!!!
Gleason 9, PSA 51 before robotic prostatectomy Jan 2010, left nerves not spared
stage 4, metastasis to C3, T6, left iliac crest, right acetabulum
40 radiation treatments, on Lupron and casodex since surgery
presently PSA .02 PET scan shows no activity all quiet..
CANCER is just a word!!!!!! we are all warriors!!!! have faith in new developments of drugs!!

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/12/2011 6:38 PM (GMT -6)   
We presume you have been to www.yananow.net  the experiences/histories and mentors area??? You can find hundreds of patients, their journey, treatments by modality and psa numbers and more. Nothing like this elsewhere, Terry H. has done a great job in making this available to the PCa community on his own doings. Not sponsored by a drug company and other such, fun. It is amazing what some people have done in fighting this dragon.

leeanglo
Regular Member


Date Joined Dec 2010
Total Posts : 191
   Posted 3/13/2011 4:09 AM (GMT -6)   
LAW, good morning to you, just popped on site here this morning and havnt been on for a while but spotted you dx and thought it might be nice to offer some support.I am 44 yrs old 45 in april and like yourself a younger member to this S..t!! desease that weve been allocated.I also had bone and lymph node mets on discovery so i am uncurable and have been put on ht therapy here in the uk.My psa dropped from 144 to only 20 after 3 months so already on adt2 now with cosadex in the mix,also having zometa infusions every 4 weeks to protect my bones.It seems all the guys on here are suffering this desease and its effects but with the greatest of respect to the older guys us KIDS !! have really got the rough end of the stick.I will attach my email ad below so if you ever wana chat or compare notes please feel free.All the very best of luck with your fight.....
Rrgards Lee.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/13/2011 4:41 AM (GMT -6)   
Lee- It has been suggest by James-Tony not to post your email address, you could have clicked on (law's member name in blue) and found he has a found email or you can set yours up the same way or there is an option to use an anonomous email address through Healingwell.

Any good offering for others whom wish to see various perspectives and talk to someone, not always do people wish to offer and do such. Casodex
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, July 22, 2018 5:28 PM (GMT -6)
There are a total of 2,984,323 posts in 327,208 threads.
View Active Threads


Who's Online
This forum has 161989 registered members. Please welcome our newest member, 45791Anne312.
421 Guest(s), 14 Registered Member(s) are currently online.  Details
Balladeer, whatdoigotDOC!, Girlie, fawad malik, Sherrine, Tudpock18, feeling good, gumby44, dbell, beagleman, KC342, LLLLX, (Seashell), moleUC