New member with question-continuous or intermittent hormone therapy?

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coach4life
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/26/2009 12:20 PM (GMT -6)   
I am a new member with a question to put out there---is it better to go with continuous hormone therapy (ADT) or intermittent (IADT)? Want to thank everyone for all the great info and support as it has really helped as we go through our journey beating PCa! I'm the wife/advocate for my husband, a 14 yr PCa survivor!
 
History should hopefully appear below if I did the signature right---but in a nutshell, Jimmy had RP in 1995, then EBR in 1998 (PSA began rising), then hormone therapy was begun in 2000 after a significant rise from 1.3 to 3.6 in 3 months) and he has had continuous LUPRON inj. up to the present successfully keeping PSA < .1! As for treatment side effects,is still continent (some accidents, but mostly ok) but impotent which is to be expected and has generally tolerated all well. (no hot flashes, that's my department!) As for the impotence, we would not have made any other decision and have no regrets.....we had a great sex life prior to PCa but have learned a lot along the way & have become more intimate in other ways-communication is definitely the key as some of you have already said.  The main difference now (with hormone treatment) and BHT(before hormone therapy--my made up abrev) is that before he did have desire but was frustrated about performance so tried different things such as viagra...now with hormone therapy desire is gone, thus the frustration is gone also. So I feel this is a good thing(not sure this is also his view). We are still on this journey together, but we are hugging and holding hands a lot more!
 
Back to question--since Jimmy, now 65 & retiring from coaching/teaching is also promising to take a more active role in his health (weighs>300 lbs, has high blood pressure-controlled, is a candidate for type II diabetes) Through this forum I have connected to some wonderful links and learned alot (THANKS!)-Dr Gerry Chodak (great videos---I encourage everyone to go look as you can watch specific ones that pertain to your state in this battle) and the Prostate Cancer Research Institute site (see the PCRI 2008 Conference-I learned a lot about trials concerning our interest in intermittent vs. continuous ADT in the talk by Dr. S Strum) to name a few. I have not listed specific links as I am not sure if it is allowed or has to be approved by moderators (maybe you moderators can give me a heads up on this)  Sooo, thru these sites I have learned that there are studies out there showing cont. ADT has some harmful side effects---such as bone loss, incr. risk of diabetes, loss of muscle, impotence, affects to cognitive function...to name a few, so for that reason there are studies showing IADT should be the way to go. It gives the body a rest so to speak--a time for some QOL benefits, and if I'm reading the info out there correctly, they have absolutely no evidence that there is any difference between ADT & IADT as to life expectancy.  We will be discussing this with our uro (who happens to be a friend in whom Jimmy has tremendous confidence), but I was wondering if we should also consult an expert oncologist---? Any response, advise, etc. would sure be appreciated..Did not mean to write so much..Thanks for all of your work and inspiration! To those of you out there beginning or further along in this journey, don't get discouraged even if PSA rises...as long as you keep informed there is constantly being new info published showing that PCa can be beat!!
Kris

Posting for my husband
Diag. 3/1995 ; PSA:6 ; Age: 51(currently 65) ; Gleason: 2+4=6
Nerve sparing Prostatectomy 6/1995, no lymph node inv.
Side effects: continent (still after 14 yrs.!) but impotent
and not much helped, tried inj./pump/viagra
3/98 - PSA:.1 ; 5/98 - PSA:.2 ; 6/98 - PSA: .3
Began radiation - 7/98 to 8/98; PSA dropped to .01
until 5/2000 - PSA:1.3 ; 9/2000 - PSA:3.6
HT began 10/23/2000 ; undetectable PSA since
 
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 3/26/2009 12:35 PM (GMT -6)   
Welcome Kris! I love the abbreviation you created :) We will have to keep that one around. Thanks for sharing your journey. It is fantastic to hear that your husband has tolerated HT for 9 years and that Lupron has kept his PSA undetectable!! My father is on Lupron and the plan is to do IHT. However, he does have hot flashes and other side effects and is very much looking forward to his HT vacation. As you mentioned, there are a couple of schools of thought on IHT vs continuous. Last year when we met with a couple of Radiation Oncologists and Oncologists, they recommended intermittent. So, the plan is that my father will stop his HT after he completes the second year and we will hope and pray that his PSA stays undetectable. IF his PSA should rise, it will most likely be started again once a certain level is reached.
If you don't mind me asking, what was your husband's post op report? Did he have any positive margins? Again, welcome to HW!!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4250
   Posted 3/26/2009 12:46 PM (GMT -6)   
Coach4life,

From everything I have read, IADT is more effective as you can continue it for a longer period as the PC cells stay androgen dependent longer and the quality of life issues are better during the periods you are off it. I hope he is on Casodex and Proscar along with the Lupron as it is more effective and Proscar is still taken during the off periods as it slows the PSA rise.
Weight training and excercise is essential he will lose muscle and bone during the treatments. Weight training will nulify this, also take calcium citrate for bone loss.

I would highly recommend that you consult with a prostate oncologist, there is a good list on the PCRI web site. They know a lot more about the biology of cancer and can adjust medications and tell when the hormones have stopped doing their magic. Even if you have to travel to see a good oncologist your current urologist can still give the treatments locally. The oncologist will act as your personal consultant.

A must read is "Beating Prostate Cancer; Hormone therapy and diet" by dr Charles Snuffy Myers. There are also free videos on the PCRI web sit from Dr Sholtz and Dr Lam that are worth viewing.

Hormone Therapy has proven effective in controlling PC for many years and hopefully there will be more advancements in the next few years that will help. Good luck.

JohnT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

JohnT


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 3/26/2009 12:52 PM (GMT -6)   
Hi Kris...I don't have anything to offer concerning hormone therapy...but want to welcome you here and just to express what a great post you wrote. You are asking a question and yet at the same time providing a wonderful insight and inspiration to those that are traveling the same journey as your husband. I applaud you for your positive attitude and support you give to your husband.

Welcome,
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


coach4life
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/26/2009 1:26 PM (GMT -6)   

Thanks all for your input. I was afraid at first (my first forum post ever!) but can see how helpful this is. Really appreciate the info.              

DotingDaughter-Found the report! and doctor states "without positive margins, seminal invasion or capsular invasion". I think this means the cancer was confined to within the prostate--the path report states the tumor "touches the inner aspect of the capsule, part. on right side, but no ext. of tumor thru the capsule or beyond marked margins are found" I remember at the time we were so relieved...ok they got it all, it didn't get outside the prostate---but unfortunately it found a way

JohnT-We are definitely getting that book! Know he should be doing training and he has promised me he will start...I think he has had a rather defeatist attitude, but all evidence shows that he can make a difference just by lifestyle...you know the one about--"If I knew I was going to live longer I would have taken better care of myself"!  That's my husband to a T~    We are also going to get that oncologist---Thanks!

LVTX-Thanks for the welcome....shoulda done this earlier

Kris


Posting for my husband
Diag. 3/1995 ; PSA:6 ; Age: 51(currently 65) ; Gleason: 2+4=6
Nerve sparing Prostatectomy 6/1995, no lymph node inv.
Side effects: continent (still after 14 yrs.!) but impotent
and not much helped, tried inj./pump/viagra
3/98 - PSA:.1 ; 5/98 - PSA:.2 ; 6/98 - PSA: .3
Began radiation - 7/98 to 8/98; PSA dropped to .01
until 5/2000 - PSA:1.3 ; 9/2000 - PSA:3.6
HT began 10/23/2000 ; undetectable PSA since
 
 


stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 3/26/2009 2:04 PM (GMT -6)   
Hi coach4life,

I engaged intermittent therapy if for no other reason than to prove the efficacy of 42 radiation treatments and 2 years of combined Lupron/Casodex.

My urologist was 100% against IADT so I had to get a second opinion from a medical oncologist at the genitourinary cancer clinic at M.D. Anderson. The medical oncologist agreed to manage my treatment, providing a PSA threshhold at which to resume Lupron and the volume of Lupron in each shot. A timetable was also set for CT scans, bone scans, and xrays, depending upon results. The regimen was set up so that if failure occurred, control was not lost.

The quality of life was significantly better with IADT, though it may be hard to prove scientifically. But QOL is all in perception, and everyone is different.

I would highly recommend IADT but caution you to hand the reins to a professional so you can get the most from the treatment. And, there is yet no evidence that IADT is less effective than constant hormone therapy.

Best Wishes,

Dave
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months and PSA remaining to be <0.1 for the entire 24 month period.
July 2001 - 2nd opinion required to go intermittent ADT.
MDAnderson biopsy revised Gleason (4+5=9).
Intermittent ADT, Lupron only, with PSA threshhold established at 1.0.
March 2007 - Diminishing returns with Lupron, conferred with MDA urologist for bilateral orchiectomy. Uro asked for biopsy of prostate again. Biopsy resulted in tumors found with Gleason (5+4=9).
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
September 2008 - PSA 0.45
November 2008 - PSA 0.67
December 2008 - Resume Casodex
December 2008 - Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


Life is not waiting for the storm to pass, it's learning to dance in the rain.


coach4life
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/26/2009 2:59 PM (GMT -6)   
Hi Dave....Thanks for your reply. I keep seeing where Lupron is combined with other drugs (such as Casodex) and my husband is just on Lupron. Wondering about that, it may just be different for each individual case. Will definitely be searching for a good expert oncologist to monitor and guide us (MD Anderson is pretty close).....that's the next step. His next inj. is in May, so hopefully his urologist will agree with this plan. Good luck to you, Kris

Posting for my husband
Diag. 3/1995 ; PSA:6 ; Age: 51(currently 65) ; Gleason: 2+4=6
Nerve sparing Prostatectomy 6/1995, no lymph node inv.
Side effects: continent (still after 14 yrs.!) but impotent
and not much helped, tried inj./pump/viagra
3/98 - PSA:.1 ; 5/98 - PSA:.2 ; 6/98 - PSA: .3
Began radiation - 7/98 to 8/98; PSA dropped to .01
until 5/2000 - PSA:1.3 ; 9/2000 - PSA:3.6
HT began 10/23/2000 ; undetectable PSA since
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 3/26/2009 3:18 PM (GMT -6)   
Hello and welcome to us, Kris,

My very best to you and your husband, you are right, it's a team work thing, that's how my wife and I handle are medical woes, we do it together. Your post was most informative, sounds like you have done plenty of research in those areas. I hope things continue to go well for the two of you.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 3/26/2009 5:10 PM (GMT -6)   
Hi Kris,

Welcome to the forum. I also post for my husband who does not using a computer at all! It is wonderful to meet long-term survivors. Members here will assist you with comments and information which we found cannot be matched anywhere - on an amazing variety of topics. My husband also struggles with a weight issue, so once again we have started the year full of resolutions! There is lots of really good diet advice in back posts here. Good luck with sorting through your questions about HT now. Welcome to you and Jimmy. Lana & CJ
Creed_three
Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable PSA since Surgery (< 0.1) specifically,  
June 2007: 0.01; Oct 2007: 0.02; April 2008: 0.02: October 2008: 0.03: November, 2008 (repeat PSA with instructions to lab to calibrate carefully) = 0.02.
 


coach4life
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/26/2009 5:45 PM (GMT -6)   

Hi Lana,

Good to meet another gal who's looking out for her husband. Mine only uses the computer when he HAS to and he would never in a million years search out info on PCa! I found a mole on his back and forced him to get it checked...they took out a baseball size melanoma...whew! What would they do without us, right? I have new resolve on the (we don't say diet) lifetime eating habits plan....I will look into more posts to find some info....Thanks! It looks like your husband is really doing well. Here's to continued success~Kris

Purgatory--thanks for your positive words~you guys are really inspirational!


Posting for my husband
Diag. 3/1995 ; PSA:6 ; Age: 51(currently 65) ; Gleason: 2+4=6
Nerve sparing Prostatectomy 6/1995, no lymph node inv.
Side effects: continent (still after 14 yrs.!) but impotent
and not much helped, tried inj./pump/viagra
3/98 - PSA:.1 ; 5/98 - PSA:.2 ; 6/98 - PSA: .3
Began radiation - 7/98 to 8/98; PSA dropped to .01
until 5/2000 - PSA:1.3 ; 9/2000 - PSA:3.6
HT began 10/23/2000 ; undetectable PSA since
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/26/2009 7:44 PM (GMT -6)   
Hi Kris,
You first post? You did great. And your husband and life together is very inspirational. I truly appreciate what you have said. I am much newer to this though I entered the club at a younger age. Still it is advanced disease and the IHT is appealing to me. But some studies are showing conflicting data on when the off times should be. I am supposed to go to the off time starting in May, but we may continue the treatment indefinitely. I am very encouraged by reading stories like Jimmy's. I too have lost all the desire after just two short years (on ADT). And my Ruthie and I are as close as can be. I love her with all my heart and she returns it to me. I thought I understood what intimate was until I learned what this disability called ED was. But true to form, like so many of the girls here have said, there are other, even better ways to be intimate. And so it is for me and my Ruthie!

I will meet Dr. Chodak in person in May. He and I will be on a panel together discussing the issues about our disease. he as an expert Doctor, and me as a layman patient. Dr. Chodak is a founding father of Us Too International. He has made a career of being a great urologist that has his mind set of helping patients cope with this disease. Very commendable.

And you could not have said it better. I don't want to think about what the last two years would have been without my wife. I have seen so many ladies here posting, that I have had the luck of seeing what such love can do for their man. And it isn't just wives, it's daughters, cousins, nieces, girfriends.

LOL...and all it cost us guys was a rib... :-)

Peace and blessings to you. To all you girls!

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 3/27/2009 8:04:30 AM (GMT-6)


coach4life
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/27/2009 2:25 PM (GMT 0)   

Hi Tony,

I want to thank you for all you do as it impacts all of us fighting PCa. I really admire your willingness to put yourself out there....I know you have helped many...far more than you even know. This is all new to me as we have mostly kept it to ourselves, but now I'm convinced the more you get into (or put into it) the more you get out of it! It would have helped tremendously when first diagnosed for us to have all this info plus the stories of so many. By the way, congrats on your 2 yr anniversary! (March 23 we celebrated our 41st!!) Keep up the good work~We will look for the show with you and Dr Chodak..

Kris


Posting for my husband
Diag. 3/1995 ; PSA:6 ; Age: 51(currently 65) ; Gleason: 2+4=6
Nerve sparing Prostatectomy 6/1995, no lymph node inv.
Side effects: continent (still after 14 yrs.!) but impotent
and not much helped, tried inj./pump/viagra
3/98 - PSA:.1 ; 5/98 - PSA:.2 ; 6/98 - PSA: .3
Began radiation - 7/98 to 8/98; PSA dropped to .01
until 5/2000 - PSA:1.3 ; 9/2000 - PSA:3.6
HT began 10/23/2000 ; undetectable PSA since
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/27/2009 9:01 AM (GMT -6)   
Kris,
Thank you for some very kind words. I was getting started on getting things together for our trip to Zion and saw this post. Ruthie and I have been together for 15 years, married for 13. We are celebrating my 2nd year with an undetectable PSA. And so it is that we are as strong as ever.

I am a lucky guy. So is Jimmy.

I plan on being around to do this stuff for a long time. Getting involved has always been my way. I have learned much since I was diagnosed, why keep it to myself? Besides, when I have been so lucky to meet some great people the rewards are friendships and love. How could I go wrong?

Again, peace.

The date for the show is May 9th. How it will be broadcast I will post here. Some great doctors and me? Who'd a thunk it.. :-)

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 3/27/2009 8:58:35 AM (GMT-6)

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