Low testosterone count 2 years after PC sugury

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Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/13/2006 8:09 AM (GMT -6)   
Hello, My name is Pete and I just found this site. I had my prostate removed 2 years ago and my PSA is still .01 a good thing but my testosterone is at 150, very low per my Doc. It just dropped this year and with the drop came depression and a state of constantly being tired. My Doc has tryed several anti depression meds. but so far they haven't helped. He told me testosterone therapy is a no no. Has anyone run into this problem? Any suggestions??
Thanks,
Pete  

Letty
Regular Member


Date Joined Sep 2006
Total Posts : 80
   Posted 11/13/2006 12:26 PM (GMT -6)   

Hi Pete and as I can see this is your first post, We'd like to welcome you to the board,

As for your question, I'm sorry I can't help you as we have not experienced this.  However, I'm sure some of the others will be along soon that may have some information for you.  I just wanted to welcome you and "bump" your post back to the top before it got too far down on the topics list where others might miss it!

 


Letty,
 
Husband diagnosed May 2006 at age 50.  RRP performed 13 July 06.
PSA 5.7,  Gleason 3+4=7, Staged T2C, Cancer confined to prostate.
His father diagnosed at age 62 and is currently a 13 year survivor!


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/13/2006 12:56 PM (GMT -6)   

Hey Lefty, thanks for bumping me up! I see that you have information about your self at the bottom of your post. Is this  required? I don't remember my PSA & Gleason at the time of my sugery but it was very similar to yours. I had mine out at 50. My father died at 52 in 1973 of what I beleive was prostate cancer. Lynph glands to bones but not diognosed back then. This testosterone thing I have now is driving me crazy. I am more depressed now than when I learned of the cancer! I am just so tired all the time and can't seem to get any treatment to deal with it. I work over 50 hours a week and when not working I'm sleeping. I'm drinking over a pot of coffee a day. I hate to sound like a crybaby but I'm at wits end with this thing. I've also posted on several other forums and haven't heard back anything yet. But I'm staying posative. I can't be alone, I'm sure someone has beaten this problem, I just have to find him!

Thanks again,

Pete  


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1725
   Posted 11/13/2006 12:57 PM (GMT -6)   
Pete,

My husband is on testosterone. He's been on it since about a year post-op, so about 8 months now. Most Docs refuse T believeing any stray cells will multiply on T therapy...which they will. Sometimes there has to be a choice made...to live with quality and take the risk or live 30-40 years with poor qulity of life. Mind my asking what your ageis, original stats were and whether your PSA is < = or greater than .01? There are plenty of Docs out there who treat low T after successful surgery Pete. Your's just isn't one of them.
Oh....to answer you question about whether low T occurs....yes, it is occasionally reported following treatment, especially after radiation.

Swim

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/13/2006 1:10 PM (GMT -6)   

Thank You Swim, I'm 53 now, as I just stated right before I received your reply, I don't remember my Gleason or PSA off hand, I'll look it up tonight when I get home. I knew there had to be others like me out there! My wife isn't going to go for the Testosterone therapy, I just know she woun't. Have you heard of any othe treatments??

Again thanks so much for your reply!!!

Pete


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1725
   Posted 11/13/2006 1:40 PM (GMT -6)   
Pete,

If ya'll do your homework, you'll find some studies on T after PCA. It is becoming more acceptable. My hubby just turned 50. His T levels have been in the basement since testicular cancer treatment in 95. There is no proof whatso ever that normal T levels will cause cancer and obviously, men with lower T levels do get cancer...so what to do? You're 53. Is your wife going to feel the aches, pains, disabling fatigue and depression, lack of any zest for life what so ever for the next 30 or so years? if she isn't then her opinionion is just that...its' you body Pete.

Are there other things? DIM is about the only thing that may offer some relief without knowing some things about your cancer first. Swim

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/13/2006 2:40 PM (GMT -6)   
I'm trying, thats why I looked up this forum. I just found out about this in my yearly physical. I told my Dr. I was tired and depressed and he guessed at it right away only to confirm it in my blood test last week. I had been on welbutrin and he changed me to effecsor but I don't think it will help either. You are right about how I am feeling and I will check with a different uroligist but I really had no idea that they do treat PC patients with testosterone, just what my Dr. and uroligist told me. Thanks for your help!!
Sincerly,
Pete

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/13/2006 3:15 PM (GMT -6)   
Swim, you mentioned DIM, what is it?

Pete

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1725
   Posted 11/13/2006 3:17 PM (GMT -6)   
SOME patients are able to be treated with testosterone following treatment. You have a 2 year HX with undetectable PSA's. If your intitial PSA, Gleason score and post-op pathology were all low you may be one of the lucky few.
That's why I asked for them.

Let me get together some places to read later tonight when I'm free. Supposed to be working so I best get to it. Takle care in the mean time.

Swim

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/13/2006 3:20 PM (GMT -6)   
Thanks Swim, me too!

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/14/2006 8:45 AM (GMT -6)   
Just an update on my history: at 50 years old PSA was 6.6 at diognosis in May 2003, surgury was preformed at Johns Hopkins Hospital, Md on 8/22/03, Adenocarcinoma of the prostate with Gleaso grade 3 + 3 = 6, organ confined with no metastases, margins negative, with pathologic stage and margins : T2NOMX. I guess I lost a year somewhere! It was 3 years ago! I copied this right off my surgury report I dug out last night. Thanks for motivating me to find i!

Sincerly,
Pete

Letty
Regular Member


Date Joined Sep 2006
Total Posts : 80
   Posted 11/14/2006 11:03 AM (GMT -6)   

Hi again Pete,

I'm so glad Swim has been able to give you some of the information you were looking for.  In answer to your question about personal information some members include in their post at the bottom of their replies, it is not required.  If you want to include your stats though, after you login, "click" on the "control panel" in the top corner of the page and you can enter your information there.  Then it will automatically include it with all your posts.  I enjoy reading others personal info because it allows me to compare our situation with theirs and also helps to answer some of their questions.  It is up to the member and is not required.

Wishing you all the best,


Letty,
 
Husband diagnosed May 2006 at age 50.  RRP performed 13 July 06.
PSA 5.7,  Gleason 3+4=7, Staged T2C, Cancer confined to prostate.
His father diagnosed at age 62 and is currently a 13 year survivor!


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1725
   Posted 11/14/2006 11:56 AM (GMT -6)   
Pete,

I'm still gonna get to some artiicles on Testosterone. Busy getting next years lesson plans written. Gosh I hate it when they get new books!
Anyway, gooooood stats Pete. Your PSA was higher than Paul's so there was probably a little more tumor burden than his but it's the same as Paul's. Best news so far is, it's been 3 years, not 2! Even makes you more of a candidate.


Now, a place to search...one place anyhow. Google a Dr. Joel Kaufman and look for his articles There is more than one version ..A Rational approach to androgen therapy in men with prostate cancer is the title. One site to find it is www.schering-malehealth.de/content/bio_kaufman.htm
There are also articles by Dr.s PK Agarwal and MG Oefelin from Cleveland Clinc on the subject. Kaufman is a Urologist in CO. If your Doc won't be reasonable and at least discuss the possibility with you, switch. My husband told his Doc either "we can work together on this or I will do it anyway." Actually, he would have gon eto Cleveland clinic not too far from here and had his care followed by them. U of M is not about to let that happen...LOL!


As long as you clearly understand there are no guarentees that cancer won't resurface Pete. We do know testosterone feeds cancer but it doesn't cause it. You aren't the first to want T replacement and you certainly won't be the last. If younger men continue to be treated we're going to see more and more men wanting treatment for low testosterone. It's a matter of quality not just quantity of life. Your stats are low and it's been 3 years already. Paul waited a year...11 if ya count the 10 he alread suffered. Good Luck with that.

DIM...diindolymethane or endole carbinole/DIM, the better combination. Comes from vegetables and is used widely in women with a hx of breast cancer to help balance their good/bad estrogens. It's usefullness in men, besides being an amazing chemo preventative, it does help the body better balance that estrogen to testosterone ratio. Some men do very well as far as the DIM freeing up a little testosterone by competing for the same receptor sites as E2 while others just get the anti-cancer benefits. Look in Life Extension for the long ans short of it. men who use T replacement do have more E2 conversion. Most use something to balance that out. Paul uses DIM and it works fine for him. It was originally given to him as a chemo prevention....we KNOW the bad PCa hormone is estrogen..so men, get those tummies down! A good brand is Enzymatic Therapy's Estro Balance. Remember to take a little D with that. It has calcium in it but no D. Antoher good brand is Nature's Plus DIM PLUS.
Gotta scoot, Swim

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/14/2006 12:05 PM (GMT -6)   
Thanks for the kind words Letty, reading through the posts I can tell there are a lot of caring people on this site. I'm so glad I found it. I've been in kind of denial for the last couple years. I didn't talk to anyone (including my wife) about my feelings or about the subject. But just 2 weeks ago my eyes were opened by a wonderful bunch of guys on a retreat put on by a group called "Reel Recovery". They take groups of 12 men at a time who have or had cancer to different locations around the country to learn to fly fish. But its alot more than just fishing, we had plenty of group meetings led by a retired pycholigist and cancer servivor who really got me to finally open up. I learned more about myself and my recovery in 3 days than I have in 3 years!! It's really changed me. I would have never been on a site like this before my trip. It's also why I'm a little less educated on the subject of prostate cancer than most on this site, but I hope to change that with your help!
Thanks again,
Pete

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/14/2006 12:14 PM (GMT -6)   
Thanks for taking the time to give me all that info Swim, I must have writing back Letty while you were writing to me. I will check it out and let you know how I make out.
Thanks again!!!
Pete

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/14/2006 3:39 PM (GMT -6)   

WOW!!!!  This is what it’s all about    :-)  

 

Pete you’ve got a good one with …Swimom   I’m learning lots too!!!!

 

This forum is soooooooo Powerful ..... and as I always say

 

KNOWLEDGE IS POWER ~ and ~ POWER conquers FEAR!!!!!

 

Hi! ~ Pete Sr.

 

Sending a warm welcome to you and yours… Glad you found us!!!

 

I hope you will continue sharing your journey with us…

 

In New Friendship  ~ Lee & Buddy


mama bluebird - Lee & Buddy… 53 on surgery day

RRP April 3, 2006   PSA 4.6 Gleason  3+3=6  T2a   Confined to Prostate

June 29th PSA Less than 0.1 Non-detectable


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1725
   Posted 11/14/2006 11:07 PM (GMT -6)   
tongue   tongue Yeah, I can come up with a few good places to start. Now if I could come up with a way to type without errors!
 
Pete,
You can expect some resistance concerning testosterone therapy but if you are serious, a Physician will eventually listen. Armed with enough information may change someone's mind. T replacement has long been thought an absolute contraindication for prostate cancer patients. Yesterday's thoughts are slowly changing though it is still a risk so many Doc's refuse to take. I understand why. If there are stray cells they could resurface. Understandable concern on anyone's part. What I understand more is my husband was 38 when he spiraled downward after losing his vital hormone and it wasn't getting any better. Heck, he still got prostate cancer and wasn't on T when he got it although adding it in late 2004 did lead to a diagnosis.
 
Thank God I pushed him to do something about his low testosterone then. Otherwise it would be sometime this year before he had PSA drawn. He turned 50 and that's the suggested age for testing. Had he waited any longer who knows how aggressive the cancer could have been. Actually he should have never been started on T in 04. His PSA was 2.7 (too high for a 48yr. old) then and should have been investigated before initiating T therapy.....goof Doc! He no sooner started on T when his PSA increased and a biopsy confirmed cancer. As soon as he stopped the T, his PSA stopped rising right away. His surgery was in 4-05.
 
That was the beginning of my education on testosterone and prostate cancer! I have read thousands of articles and studies on both subjects since and come to one conclusion.....I'll never know enough! Good Luck and stick around. I'd love to know more about the fishing trip and your search for a healthier tomorrow!
 
swim
 

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/15/2006 8:36 AM (GMT -6)   
Thanks Moma Bluebird (Lee & Buddy) for your warm welcome! And thanks again Swim for helping me get started on how to fix this complicated problem we both have. I read what Dr. Kaufman had to say and it made sence to me. I am curently shopping around for a new uroligist, (I haven't been to one in about a year and a half) and I will be sure to bring a hard copy to show him. I have been having my PSA checked by my reg. Dr. but had a falling out with my uroligist who I had been with throughout my surgury and after. He really broke my heart, I thought he was different but when it came right down to it, it was just about $$$$. I bonded to this Dr. as you know, a patiant / Dr. relationship can get very personal during your recovery. He was even the one who told me about Johns Hopkins and wasn't upset when I chose them for the surgury over him. But when I was between jobs and picked and had to pick up COBRA insurance, he dropped me like a hot potato! Even through I was paying $1,300 a mo. for it. And he let his financial guy tell me they would not except COBRA! As I was walking out I saw him and wanted to tell him I would pay cash just to stay with him, he turned his back and walked into his office and closed the door. I just don't get some people! But the guys at "Reel Recovery" made me see that I really need to get another uroligist ASAP. and I'm working on it. By the way, if you have time check out Reel Recovery's web site, it will tell you more about there group than I can.
Thanks for listening,
Pete

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/17/2006 9:23 AM (GMT -6)   

A very special new Thread: To all my new friends!!!! from Pete Sr. was started....

 

Make sure you don't miss it!!!!!

 

It reminds us exactly what this forum is all about and how important sharing is!!!

 

Thank you Pete for having the courage to step into the sunshine and let it bring warmth and love and caring into your being.............

 

We will "always" be there for you and other who need our strength.... and at times we may need to pull from your strength….  So always remember how important your “journey” is for all of us.

 

yeah    Please ~ Keep this thread:  Low testosterone count after 2 years after PC surgery 

going because of the topic and all the information & knowledge  being shared!!   Others will definitely learn from this journey’s posting as we take the next stepping-stone.


mama bluebird - Lee & Buddy… 53 on surgery day

RRP April 3, 2006   PSA 4.6 Gleason  3+3=6  T2a   Confined to Prostate

June 29th PSA Less than 0.1 Non-detectable


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/25/2006 10:15 PM (GMT -6)   

Dear Pete,

 

Back on 11-13 ~ I was blown away with your Thread: Low testosterone count 2 years after prostate surgery…

The postings between you and Swimom.... really touched my heart ~ because this is what this forum is all about!!!  Knowing you're not alone........................... yeah  

 

I responded with a warm welcome…. and told you I'd be back~~~~  Chirp ~ Chirp ~ Chirping... I'm back  tongue  

 

I knew I’d be back to share with you…  but not having had any experience or knowledge as to what was happening I wanted to understand a little more about which stepping-stones you were on now and which ones you’d traveled before today.

 

After going back and really soaking in what Swimom and you have talked about ~ it was truly meant to be that you found us!!!!  And how glad we all are that you did!!!!  It is a blessing for all of us too!!!!

 

You truly are not alone and now so many others will know they are not alone with Your Journey's thread: Low testosterone count 2 years after prostate surgery... the information here is so important... you really need to continue coming here with your updates... Okay!!! :)

 

Please ~ continue to post different avenues that you search out… we want to understand everything ~ and we want to be there for you!

 

After reading all the postings....I have typed a long posting and it’s kinda all over the place so I’m going to separate it into several different postings….

 

We hope to hear from you soon as to what your next steps will be. 

Remember….. we are traveling with you ~ on this new path.

 

Keeping you “extra” close in thoughts and prayers…

In Friendship ~ Lee & Buddy

 

Pete ~ Thank you for your kind heartfelt words on our Thanksgiving Thread….  I had this special message ready to send to our friends...over a month ago.  It was something I needed to do to let others know how important they have been to us.  I thought what a nice Thanksgiving Card this would make ~ so saved it for our favorite “day” to send.

 


mama bluebird - Lee & Buddy… 53 on surgery day

RRP April 3, 2006   PSA 4.6 Gleason  3+3=6  T2a   Confined to Prostate

June 29th PSA Less than 0.1 Non-detectable


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/26/2006 10:49 PM (GMT -6)   

I told you I'd be back.................  tongue   part2....

Hi Pete ~

 

After re-reading your postings again… I have to say WOW again!!!

 

It’s taken me some time to process my thoughts and understanding of things.  Sometimes this happens to me and I can’t just sit and type/write something.  I have to feel it and then it just happens.  Several times I’ve come to the computer to talk with you and my thoughts were going in all directions.  Plus ~ I wanted to look at the Reel Recovery Website and understand what it is about!!  It is obviously a very powerful / positive tool for helping to understand what one is going through and how one can pull strength from others.  What an amazing story of giving by Stewart “Stu” Brown.  What a strength to leave ~ for others to

pull from. 

 

You have an inner strength that just needed a little nudging to move you into the   s u  n s h i n e. 

And you will see    r a i n b o w s     now that you are freed from the darkness that surrounded you!

 

Thank you for opening up to all of us!!!!  Your journey will be so very important for “us” and newbies coming along….

 

You have taken such “POSITIVE STEPS”…. In very “POSITIVE DIRECTIONS”

and we are so happy to be along for this journey.

 

I’m interested to know how you found out about Reel Recovery?  Who ever directed you to this program obviously knew you were suffering silently… and that person deserves a huge HUG!!!!!!    So here’s one for you and one for the person who set you on the right stepping-stone to move forward!!!!

 

!@#$%^&*     H U G S  for  Y O U  and that  ”Special person who led you to the light”  *&^%$#@!

 

Take care and know that we are so happy you’ve joined us.

 

In New Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… 53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

April 3, 2006   PSA 4.6   Gleason  3+3=6  T2a  

5 of 7 cores right lobe, 2 of 7 cores left lobe

Confined to Prostate

June 29th ~ PSA Less than 0.1 Non-detectable


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/27/2006 12:22 PM (GMT -6)   
Hey again Lee & Buddy,
 
You asked how I found Reel Recovery? I am an avid fly fisher, at least I used to be before I fell into this awful funk! I started as a kid over 45 years ago. Anyway I read alot of magazines and different web sites about fly fishing. I'm not quite sure when I first read about them or where, I just remember thinking it was a great thing for guys with cancer. I no way thought of myself as having cancer, it had been years since my surgury. I thought I was cured and not elligable to go on one of there retreats. After about a year of reading about them and the different forums they had had around the country, I thought I'd write them an E-mail. In it I told them I wasn't looking for any freebee's and that I didn't concider myself as having cancer. I also told them about the horrable depression I'd been in since my surgury and how it had affeceted me both physcilly and mentally and asked if they ever had anyone like me attend. To my supprise, Stan wrote back saying I was a perfect candidate for them and they had loads of guys like me attend, but they only had 2 retreats left this year. The 1st was outside of Seatle Washington and the final of the year was in Northern California and I was welcome to attend either one but didn't expect me because I live in South Florida. I chose N. Cal. in the begining of November. They paid for everything but my plane fare to Reno, NV which was closer than SanFransisco. So after I found plane tickets for $100.00 each way on Price-Line.com. I signed up bought the ticket and rented a car. I truly didn't think they could help me and was really just going for the fishing. Boy was I wrong!!!! I can't speak highly enough of these guys. I remeber sitting in the 1st meeting trying to think of a way I didn't have to particapate and just go fishing. But after being introduced to all the guys and hearing their stories, I told mine. By the 2nd day I was in tears just letting it out with more support and compassion than I ever experianced with a group of guys before in my life! It was great and so was the fishing! But it was the group leaders and my fellow survivers that I'll remember. I'm still writing to a lot of them and am trying to plan a reunion next year. It truly was a Band of Brothers, to steel a phase frome someone else. Thats my story. Sorry it was so long, but it motivates anyone to go it's worth it.
Thanks for asking,
Pete
  
53 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg.  


DanielB
New Member


Date Joined Nov 2006
Total Posts : 2
   Posted 11/29/2006 9:44 PM (GMT -6)   

Hi Pete,

I had my prostate removed a little over 3 years ago at age 47.  My cancer was locally advanced so I had chemo and hormone deprivation therapy.  My testosterone level only increased about a year ago and now seems somewhat normal.  Recently I had implant surgery.  I think I survived all of these changes in my body by focusing on exercise.  Soon after I finished the chemo, but while still on casadex I began running.  I hadn't run much before my diagnosis.  To make a long story short, eight months later I ran a marathon.  It was a great distraction away from all of the chemicals in my body and the surgery.  I continued exercising until I literally could feel the drugs leaving my body.  Lately I've been recovering from the implant surgery and have not been able to exercise and I feel lousy.  I can't wait to get back to the gym.  My suggestion is to try some type of physical exercise that you enjoy and set some kind of goal.  I don't think it can hurt.

Good luck, Daniel

 

 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1725
   Posted 11/29/2006 11:26 PM (GMT -6)   
Daniel is a wonderful example that medicine and Doc's are a practice, an art and searching for the right artist can often make all the difference in the world! How great is it that you are doing so well Daniel? God Bless all that you have endured and all that you have overcome!

Swim

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/30/2006 8:09 AM (GMT -6)   
Daniel,
That's an amazing story, guys like you are my heros and hopefully will inspire me! At the risk of sounding like more of a crybaby, I have other health problems which limit my abillity to exercise. When I was young I did some really stipid things after my Dad died after a long battle with PC. Lots of motorcycle & car wrecks and an awful lot of time spent in the hospital. I was the president of "the just say yes club" I just din't care about anything and never figured I'd live this long, but God has his reasons for everything.
I'm still here and have a great wife and two wonderful sons as well as neck, back, knee, shoulder, and hip problems for starters. The Dr's say I need at least 6 orthopedic surguries and counting. I've lost count of how many I've already had. To compound these problems, I had to have my thyroid taken out several years ago due to a egg size tumor growing around it. I've never been able to get the right mix of med's to keep me normal with that. I try to swim, but have limited access to a pool and can't handle the ocean anymore. I never thought I'd write about all this stuff in this forum because everyone has problems, and like Daniel, alot are worse than mine. After my 1st post which was this one about my low testosterone I started reading the other threads and reallized how many brave people are here and I must have sounded like a little ***** to most of them, complaning about MY problems. And after reading back over this post, I'm doing it again. Sorry people, I'm just in one of those moods and not feeling to good about myself today.
Pete
53 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg.  

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