Gleason 8-10

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, 

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

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,

I like that story too.  Gives everyone hope that this thing can be beaten or at least staved off for a long, long time.

 

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

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 1 st 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.   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)

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! (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

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.