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pooks6719
New Member


Date Joined Jun 2006
Total Posts : 17
   Posted 11/13/2006 12:07 PM (GMT -7)   
 Is there anyone here who was orginally diag with a Gleason 8 thru 10 and a PSA above 20?  It appears that most of the men here are thinking about having surgery or have had it.  I have alot of hope that my husband's hormone treatments will work for some time but I have to also be realistic. So far so good and he goes next month to get the 12 mo. hormone implant that was put in last Dec. taken out.  I'm wondering if there is anyone else here with similar numbers and what type of treatment they are doing.
Husband's original PSA 32
cancer in 6 out of 12 samples - Gleason 9
Radiation / 12 month Hormone Implant
 


Letty
Regular Member


Date Joined Sep 2006
Total Posts : 80
   Posted 11/14/2006 8:49 AM (GMT -7)   
Hi pooks6719,
 
My husbands gleason was a 3+4=7.  I have seen other posts on here by men or their wifes with higher gleason's but I don't know where they are now!  Sometimes others check in quite infrequently so maybe someone will still come along.  There is another website however called yananow.net that has a lot of information about all kinds of treatments.  In the "mentor experience" section, men have posted about their treatment and leave their e-mail address so you can ask questions if you have any.  If you haven't been to this site before, it would be worth checking out.
 
Best of luck to you and yours, 
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!


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/14/2006 12:25 PM (GMT -7)   
Hi ~ pooks6719,

Welcome.... I hope you find answers.... and yes ~ we would really be interested in hearing about your journey. This is a different approach and one that a lot of us would like to know about.

Thank you so much for taking the time to post. It helps not only you ~ but it helps us as well.

May I ask how old your husband is?? and where are you located??

Our thoughts and prayers will be with you..... I hope you stay in touch!!!!

Take care ~ 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


jeb187chs
Regular Member


Date Joined Aug 2006
Total Posts : 62
   Posted 11/16/2006 8:37 PM (GMT -7)   
Pooks6719,

My Gleason was first estimated at 8 from biopsy but ended up 9 at post-op pathology. My PSA was over 16 before surgery, but...... because my bone scan, cat scan, pet scan, lung x-ray etc. all came back clear we decided on surgery. After the pathology though based on the pathology the doctors suggested I seek further treatment. My PSA post op has gone to 0.2 and stayed there for over a month. My Prostate cancer had penetrated the sheath and invaded the seminal vessicles and bladder neck..... but thank goodness had not spread to the lymph nodes that were also removed.

I start after Thanksgiving on a clinical study using hormone and chemo or hormone therapy alone. It does not preclude radiation and I expect to have it whenever my oncologist decides it is time. I am a big believer in second opinions and I will continue to have followups by at least two oncologists during my treatment. The way I look at it.... I am not giving up and I won't let them do it either. We had a problem with one radiation oncologist and consulted another and truly got a new lease on life and feel we are on a "good" path now.

Hang in there as our friend Bluebird says this is perfect place to find "rainbows" and "hugs" when your days are dark and gloomy. People here are blessed by the others in this forum.

John
Diagnosed Aug. 7, 2006
Age 56
Biopsy 8 of 10 positive
Gleason 8
PSA 16.2
Negative CTscan, bone scan and lung x-ray
Lapro Prostatectomy 9/7/2006
Capsule penetration, seminal vessicle involvement, clear lymph nodes.
Post op PSA 0.2
Followup Hormone Therapy


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/21/2006 1:00 PM (GMT -7)   

Hi ~ Pooks6719  and Loved One,

 

Did I hear that a rainbow was needed……and.......... a special HUG?

 

Here they are comin’ atchu!!

 

 

!@#$%^&*     H U G S  for  Y O U     *&^%$#@

 

/////////////////////////////////////////////////////////////////

////////////////////////////////////////////////////////////////

///////////////////////////////////////////////////////////////

///////////////////////////////////////////////////////////////

 

Your very own rainbow ~ just for you!!!

 

Thinking of you and hope you’re finding answers.

 

In 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

Post Edited (bluebird) : 11/22/2006 9:00:21 AM (GMT-7)


dreadnought
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 11/21/2006 1:46 PM (GMT -7)   
Jeb,
I have been waiting to hear what you have decided to do. I am in the same situation as you are and am going back to the MD next week to see what options we may pursue. The clinical trial that you appear to be in has been mentioned as a possibility.
Could you tell me what kind of side effects they have told you to expect? How long will the treatment last.

Good luck to you......you are in the prayers of lots of folks on this board.

slls
Regular Member


Date Joined Dec 2005
Total Posts : 38
   Posted 11/21/2006 2:54 PM (GMT -7)   
Recently publisher William Ziff passed away. He was diagnosed with Pca 28 years ago, the Doc’s gave him 2 years. I like a story like that, I just wish I could see his medical history.

Wicket
Regular Member


Date Joined Aug 2006
Total Posts : 316
   Posted 11/21/2006 4:45 PM (GMT -7)   
Slls,
 
I like that story too.  Gives everyone hope that this thing can be beaten or at least staved off for a long, long time.
 
Ellen
 
Curtis, 63, Diagnosed Aug 21, 2006
T1C
Gleason 3+3=6, 3+4=7
PSA 4.10
Bone Scan Negative!!
 
DiVinci surgery done Oct 3, 2006
Catheter out Oct 11, 2006
After surgery T2C and cancer found on both sifes instead of just one.
Pathology report came back clean!!!


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 11/21/2006 6:22 PM (GMT -7)   
I was diagnosed in January 2005 at age 61 - PSA 26.5 and Gleason 7 (4+3). I was started on Zoladex (same as Lupron) and Casodex to reduce the size of the tumor which was very large. I did all my reading, met the requisite number of doctors calling each other names and liars, decided the first uro was a quack and finally decided on 5 weeks of external beam RT and then HDR brachytherapy during the summer of 2005. PSA has been checked every 2 months since the brachytherapy and has been undetectable each time. Had last 3 month Zoladex shot a few weeks ago (total of 2 years) and will feel more comfortable about PSA readings after this shot has run its course. Several months after the brachy, urologist did a DRE and said prostate was so flat that it felt like it had been removed (it was about twice normal size the first time it was measured via ultrasound). Side effects of both HT and RT have been minimal and not one moment of incontinence.

That's my story and I'm stickin' to it!

jeb187chs
Regular Member


Date Joined Aug 2006
Total Posts : 62
   Posted 11/21/2006 9:36 PM (GMT -7)   
Dreadnought,

The side effects of the study, which by the way I qualified for now that my PSA has held at 0.2. The hormone therapy is supposed to put the cancer cells "to sleep", supposedly the prostate cells most often do not continue to grow and multiply when the testosterone is reduced by what amounts to "chemical castration". The good thing about this compared to physical castration is that it can be stopped and allow the production of testos to start again. The side effects..... loss of sex drive, possible hot flashes, possible loss of muscle mass, and thining of bones. Usually short term these side effects disappear after the treatment ends. The treatment usually runs one or two years.

If I get the chemo leg.... half get chemo half don't, the side effects of chemo can be loss of appetite, vomiting, and possibly loss of hair and anemia. But these last ones are less likely with the chemo for prostate cancer. The doctor says most participants have little or no side effects.

The radiation if we do it while in study, can add other side effects. Possibly affecting continence, sex drive, bowel function etc.

BUT the bottom line....... we'll be killing the little buggers, extending life, and delaying the possible reoccurance of the cancer. In my mind I have to do everything possible to achieve this. The nomograph based on my pathology, gleason score, and pre-op PSA indicates a 95% likelyhood of reoccurance of the cancer.

Not pretty but that's the way I understand it. If anyone else has any comments I'd love to hear them. I am determined to beat this.

John
Diagnosed Aug. 7, 2006
Age 56
Biopsy 8 of 10 positive
Gleason 8
PSA 16.2
Negative CTscan, bone scan and lung x-ray
Lapro Prostatectomy 9/7/2006
Capsule penetration, seminal vessicle involvement, clear lymph nodes.
Post op PSA 0.2
Followup Hormone Therapy


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/22/2006 8:49 AM (GMT -7)   
John ~ I hope you don't mind me quoting the information above and pasting it to your Thread "John ~ Strength in Numbers".  This information is so important it lets others know where you are in your journey .. and keeps your journey current...
 
tongue  Lee "the chirping mama bluebird"

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 2/9/2007 11:34 PM (GMT -7)   

Hi ~ Pooks6719  & Loved One,

 

Just a little note to let you know we are thinking of both of you!!!

 

No response back since 11-13 on your Thread: Gleason and was a little concerned...

 

Having seen postings periodically from you on other threads listed below….  Decided to do a search to see if you had any resent PSA's and I found them!!!!!!! 

 

What a wonderful feeling to see these results!!!!! 

Partial Quote:The implant has been successful in reducing his PSA to .08 from an original PSA of 30

 

*&^%$#@    WOO HOO!!  (*&^%$#  undetectable!!!!!!

 

I hope you don’t mind me putting together a little time-line for Newbies…. So they can see where you 1st came onboard and where you are today.  This is so important!!!

 

Take care and we would love to hear from you as to how things are going.  yeah

In Friendship ~ Lee & Buddy

 

 

(direct links below ~ just click on the title!  

Reminder to click on the REFRESH icon once there)

 

Partial Quotes from Pooks 6719

 

12-19  VA Disability Benefits

 

We just got my husband's new PSA count and it is .08. My husband is on a 12 month hormone implant which will be removed this week and another implant put in good for another 12 months.  The implant has been successful in reducing his PSA to .08 from an original PSA of 30 so this will be a Great Holiday!!

Wishing you all a Joyous and Healthy Holiday and New Year.

 

Husband's original PSA 32

cancer in 6 out of 12 samples - Gleason 9

Radiation / 12 month Hormone Implant

 

 

12-20 reply to Gleason 9 (Kate12)

Orginally my husband's bone scan showed a couple of spots but all the doctor's confirmed that they didn't think it was anything other than either some old injury or arthritis.  We are just hoping they are right. He was told that there was no cure for him and because of his orginal high PSA and the Gleason 9 he would be on some type of treatment forever.  Surgery was not an option for him as the numbers indicated there is a good chance it was already outside the prostate.  The hormone implant appears to be doing its job with very little side effects so far.  He is going back to doctor this Friday to get another 12 month implant. Like I said before - the PSA was lower again this time - so for now - we are happy.  There is also another message board on healthboards.com that seem to have more people with Gleason 9's.  I've gotten alot of good info from both this board and the other.

 

12-19-06 reply to Gleason 9 (Kate12)

Please have hope.  My husband had orginal PSA of 30 - 32 with a Gleason 9 and was had a hormone implant that was good for 1 year and had 40 + radiation treatments.  It took a whole year but the hormones brought the PSA steadily down.  He just got his new PSA results and he is at .08.  Hopefully you will see it go downward  also.  This past result was the greatest news to get before Christmas.   Here is wishing you and your's a joyous and healthy New Year.

 

11-13-06  Gleason 8-10 thread by Pooks6719

Is there anyone here who was orginally diag with a Gleason 8 thru 10 and a PSA above 20?  It appears that most of the men here are thinking about having surgery or have had it.  I have alot of hope that my husband's hormone treatments will work for some time but I have to also be realistic. So far so good and he goes next month to get the 12 mo. hormone implant that was put in last Dec. taken out.  I'm wondering if there is anyone else here with similar numbers and what type of treatment they are doing.

 

9-20-06  Acanthosis Nigricans thread by Pooks6719

Has anyone here have Acanthosis Nigricans as a result of their prostate cancer? My husband has it and the derm states it's caused from the prostate cancer. If anyone here knows of it or has it I'd appreciate any input as to how you are treating it as we have several creams but have to keep changing as they all start to irritate after a while. Apparently this will be an on going problem unless the cancer goes away and with an original PSA of 30 and a Gleason 9 - this is unlikely - but I'm still hopeful. Any information would be appreciated.

 

7-19-2007 Replied to: VERY ANXIOUS about HUSBANDS PROSTATE DIAGNOSIS

Medlaw - My husband had an orginal PSA of 30 with a Gleason 9 and was diag in 2005.  He went for the bone scan and x-rays also and just had them all re-done again last week. The only thing that showed was the same small area on ribs which also showed up in 2005 and our doctor said it was from an old injury .  Nothing changed in 2 years on the scans & xrays but his PSA is now down to 0.1.  I just went through all the questions and concerns of could the cancer be spreading even though the PSA isn't rising because he was have some back pain.  We have been told that unless the PSA is rising or the original PSA was in the 100's not to fixate on it spreading to the bones.  The doctors have told us that we all have pain in some form on any given day and just because he has prostate cancer doesn't mean every pain or shadow on a test is associated with the pc. I do alot of research and I want answers because I don't like to be blindsided.  However, I'm trying very hard not to waste my time worrying - until there is a confirmation that I have to worry.  Although I don't post much - this is a great site with alot of people that are more than willing to share and give whatever support they can.  Hope all goes well for you and everyone here.God Bless.

 


Husband's original PSA 32 in 2005

cancer in 6 out of 12 samples - Gleason 9

Radiation / Hormone Implant since Dec 2005

Last PSA 4/07 - .08


 

:-)  thread updated: July 19, 2007 .....Pooks ~ we are so glad to see you posting.... Our thoughts continue to be with you! In Friendship ~ Lee & Buddy

Post Edited (bluebird) : 7/19/2007 8:49:59 PM (GMT-6)


fredlp
New Member


Date Joined Jan 2007
Total Posts : 14
   Posted 2/10/2007 8:10 AM (GMT -7)   
Hello All

I was originally diagnosed in mid November 06. My PSA was 38.3 and my Gleason was 7 (3+4) 2 of 12 cores positive at about 30%. My Urologist, of course, recommended immediate surgery. I decided on additional research and after careful consideration, decided on Proton Beam Therapy at Loma Linda Medical Center in California. I have an appointment with the Dr. at Loma Linda on Tuesday February 13th. I will either begin treatment in the next couple of weeks or will start a course of hormone treatment for two months prior to beginning treatment. By the way, my current age is 70. I think my main point here is related to high PSA and the meaning/importance of the reading. I was retested about 30 days after the original 38.3 in November. That December PSA was 24.6 and after requesting antibiotics, a Urologist prescribed 30 days of Cypro. The reading two weeks ago, about February 3rd was 15.6. Obviously there was/is infection in the mix. I continue to watch my diet and exercise every day and I will be tested again on the day of my appointment at Loma Linda. I will get back with additional info after returning.

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/10/2007 10:27 AM (GMT -7)   

Hi ~ fredlp, 

Welcome! to Healingwell and thank you for sharing…. 

Please….. consider starting a personal….New Thread  “today”….with your information just posted…. 

Then we can all follow your journey with Proton Beam Therapy.    This would be so valuable for Newbies down the road and for those of us... who want to learn more about all options....   

This would truly be a wonderful gift for all of us….   

In New Friendship ~ Lee & Buddy

Thank you for starting your thread! yeah

(direct link ~ just click on the title!  Reminder to click on the REFRESH icon once there)

 Off To Loma Linda for Proton Therapy  Started by: fredlp


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

Post Edited (bluebird) : 2/13/2007 12:10:40 PM (GMT-7)


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 2/10/2007 11:42 AM (GMT -7)   
My dad was diagnosised with PCa on his 49th birthday (15 years ago). He had a gleason of 7, PSA off the charts and was staged at D2, final stages. He was given 6 months to live and told to go home and get his personal items in order. Through friends, he found a wonderful onocologist who was determined to "control" my dad's cancer until a cure was found. He went through hormone treatments, radiation and lastly chemo. My dad always said, "they save the Big guns for last." All of the treatments worked well to control his cancer. His PSA dropped down as low as 2.6. Unfortunatly, he fell and broke his hip in Feb 1996. That is when he lost his fight. Before breaking his hip, he worked every day, traveled a lot and lived a very full life. I contribute the braking his hip to his decline. The treatments do work. He lived 4 1/2 years with very few days of "being or feeling sick". Good Luck to you all. This cancer is very beatable and I know that a cure is right around the corner! Oh, and if you have not heard of it, there is a book called "Peace, Love and Healing" by Dr. Bernie Segal. It discusses how positive thinking and Knowing you can beat cancer does wonders for the healing process. I highly recommend it to everyone. I gave it to my husband last week, after he was diagnosised with PCa.
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Looking for Surgeon with lots of da Vinci experience
Live in OK, willing to travel


Prairie Gal
New Member


Date Joined Feb 2007
Total Posts : 3
   Posted 2/21/2007 12:53 PM (GMT -7)   
Hi Pooks, I remember you from the other forum. Just wondering how you and your husband are doing.
 
My husband is approaching two years since his diagnosis, and he is feeling great. His PSA was 120 at diagnosis, Gleason 9. He has been on Eligard injections and Flutamide tablets and his PSA is currently .3.
 
Take care, and let us know how you both are.
 
 

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 2/23/2007 10:05 PM (GMT -7)   

Fredlp:

Hope all is going OK at Loma Linda.  Proton is being used quite a bit now for salvage after surgery failure and while I was there had several guys with high PSA's.

Keep us updated.

Dutch



Diagnosed Feb 2001  (Age 65)
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.

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