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Posted 11/14/2013 1:26 AM (GMT 0)
Grettingz,
Red--please forgive me for highjacking your thread, but Grettinz has no e-mail listed
And I merely wanted this VN vet to know that he has my support if he elects to have an orchiectomy since he mentioned it and not his doctor. With his heart condition it may reduce the risk of stroke and heart attack. Never forget the "red dirt" of Pleiku and your support of our "warrior women" is certainly appreciated. Salute!
Bill idea
Posted 11/14/2013 12:36 PM (GMT 0)
Gunfighter, no problem! This thread is to serve as a place for support and information sharing, with intent to focus mostly on these "high risk" unique issues.

With the G9 stuff, we often face some pretty difficult situations and choices. Your support of greetingz is wonderful, and just what we need to hear.
Posted 11/14/2013 2:37 PM (GMT 0)
My husband is a Gleason 9.  I am new to this board but will try to create a signature later. He also chose the 3 prong approach of HT, Tomotherapy and HDR seeds. He had 25 external sessions and 4 HDR. Treatment ended about a month ago. He has recently had excruciating pain in his shoulders. We know that getting mets initially to the shoulders would be odd but I am frightened. Meeting with ortho PA today and hope to get some answers.

God Bless all of you in this journey...

Posted 11/14/2013 4:37 PM (GMT 0)
Harp and Gunslinger, bless your hearts. I am encouraged. I dont check my mail but maybe once a week,.. but here; hallokkbye at gmail dot com

Montanan, I wish your and your husband great success with your treatment.


(email "obscured". I would prefer you remove it entirely, and put it in your profile instead. - 142)

Post Edited By Moderator (142) : 11/18/2013 7:57:35 PM (GMT-7)

Posted 11/14/2013 5:25 PM (GMT 0)
This is a very interesting... and sobering...thread.

Good luck. I really feel for you guys that G9's and seeing an increase in PC activity.

I know I will eventually be following in those footsteps. I am a G4+3, but am on HT so I am in the incurable phase.

I suspect the only difference is speed of advancement?

Mel

Posted 11/17/2013 1:24 AM (GMT 0)
Thinking of you Greetingz! My mom and her side of the family are from Topeka. I have fond memories of Lake Shawnee and Gage Park.
Posted 11/19/2013 2:54 AM (GMT 0)
Just adding to this post that my dad, in his 70s, gleason 9 post surgery with clear lymph nodes but seminal vesicle involvement (robotic prostatectomy in april 2013)...his most recent psa results still have him in the "undetectable" range!
:-)
Posted 11/20/2013 1:59 AM (GMT 0)
Skooley-      I also am in my 70's  (76) with Gleason 9.  May 2012 robotic surgery, Nov. 2012 IMRT for 2 months, Degarelix 80 mgm monthly for 1 yr. Ended 2 weeks ago.  psa neg for 5 months after surgery then rose to 0.12 prompting salvage treatment. psa neg every 3 months for past year while finished with IMTR but while still continuing monthly ADT. Now waiting to see what the psa does while off ADT.  Glad to hear your psa is not detectable.  That is always a relief.  Hope it continues that way.  Dr. K    pmikey

gleason

Posted 11/20/2013 3:53 AM (GMT 0)

My father has been recently diagnosed. He is 48 always been healthy no medical issues. He started to have severe pain that would start in his lower back and radiate though out his body. He went to the e.r. where they did a ct scan. C.t. scan showed lesions on the spine and the doctor suspected cancer. We got a family physician  which ordered a pet scan. Pet scan showed hotspots in the prostate, pelvic lymph nodes, kidneys, colon. Lungs, liver, and pancreas were clear, her exact words were from the neck down in the skeletal system. She said it was one of the severest cases she had seen involving the bones. We went to an Urologist who performed a prostate exam then ordered a biopsy. His Gleason score was 4 + 5=9 Our oncologist is starting chemo to attack the lymph nodes, then hormone therapy later. Our Urologist is very encouraging , that we could have years. Our oncologist is straight forward telling us it is advance and non curable. My question is will this treatment help his pain? Have any of you had similar treatment and what was the outcome? Why does it feel like a roller coaster? One doctor up beat, encouraging, the other mellow toned but vey precise. We will see our oncologist Thursday to discuss when we will start treatment. His p.s.a level was 676. We feel like we are in a fog. This forum has been much comfort to me. I read your stories and feel like I know each of you. I'm so glad I ran into this researching. When will he start to see some relief in pain? 15 mg time released morphine twice a day and 15 mg morphine 1 to 2 as needed every 4 to 6 hours and it still sometimes doesn't knock it, I read its called break though pain. Any advice would be greatly appreciated.

age 48

Gleason 4+5=9

p.s.a. 676

bone mets in skeletal system

lymph nodes in pelvic

Getting ready to begin treatment

Post Edited (dotson) : 11/19/2013 9:06:05 PM (GMT-7)

Posted 11/20/2013 4:19 AM (GMT 0)
Dotson,

I've started a new thread for you so folks can say hello. You'll get more attention with your own thread. People don't always read past the first page or two on a long-running thread like this one.

Your new thread is here: www.healingwell.com/community/default.aspx?f=35&m=2912963
Posted 11/21/2013 4:18 PM (GMT 0)
Latest PSA came back...Up again...Dang. I guess it is time for second line hormone therapy. Hubby is so depressed. Lupron alone only worked for about 5 months. Lowest PSA 1.2. I hope and pray that Casodex does the trick for longer
Posted 11/21/2013 4:34 PM (GMT 0)
There are lots of treatments with more coming on line every day. He's just getting started. Tell him to cheer up. We'll spell you on the hoping and prayer.
Posted 11/21/2013 4:54 PM (GMT 0)
Thanks Peter.....I have been telling him that but he is having trouble believing me
Posted 11/22/2013 3:43 PM (GMT 0)
My latest 6 month PSA test

PSA values:
Nov 2011, undetectable
Feb 2012, undetectable T=1.66
Nov 2012, 0.29 T=4.0
May 2013, 0.32 T=5.11
Nov 2103 0.20 T = normal
Posted 11/22/2013 4:12 PM (GMT 0)
Fox Run    

What is your plan now since your psa is 0.20 ?  Observation or resume ADT.  I may have similar results since my psa has been zero while on ADT but I completed 1 year of Firmagon on 9/11/2013 and now I anxiously await what my psa will be after stopping ADT.  I have had Robotic surgery, IMRT and 1 yr. of ADT.    pmikey

Posted 11/22/2013 5:04 PM (GMT 0)
My gleason was 4+5 (2 samples) MDA, 1 sample 4+5 Johns Hopkins, extra capsule invasion (buldge)
possible seminole.(weak signal). psa 9.5. radiation 79.2 rads. Protons+photons+Lupron.Lupron 2 months before , 2 months during, and continuous after. But I might hang it up after the 6 months.
Doctors here do not get paid what the shot costs. so that is a problem(medicare) I don't know about the kickbacks. I have major sleep problems, long periods of boiling alive, many gastro problems from the xrays. and no white cells anymore. My understanding is the rads hits the marrow and hurts it. and Lupron inhibits white cell maturation.
Posted 11/22/2013 7:24 PM (GMT 0)

pmikey said...
Fox Run
What is your plan now since your psa is 0.20 ? Observation or resume ADT. I may have similar results since my psa has been zero while on ADT but I completed 1 year of Firmagon on 9/11/2013 and now I anxiously await what my psa will be after stopping ADT. I have had Robotic surgery, IMRT and 1 yr. of ADT. pmikey

Same plan, keep monitoring every 6 months until my 5 years are up(in 2 years). I've been off ADT for almost 2 years now and until my PSA levels says otherwise, I have no intention on going back.
Posted 11/26/2013 5:27 AM (GMT 0)
Hey everyone....just realized how this thread is working and wanted to raise my hand virtually and say I'm here....my story can wait...my signature below gives a good idea...peace to all..
Posted 11/26/2013 4:40 PM (GMT 0)
Hey Percy - thanks for checking in!  Every story here may help someone that is looking for options, and for some sense that they're not alone.  This diagnosis is isolating; I know of no one else in my sphere of contacts with this, and HW provides a critical supporting community.
Posted 11/27/2013 6:37 PM (GMT 0)
Dropping in to update.

A heartfelt thank you to those who have replied regarding my last post. I am not of the sort who reads up on doctor speak, and I have a hard time with some of the more detailed cancer jargon.

So I just speak as I experience. I am halfway through my radiation treatment on left hip/left shoulder/clavicle. The clavicle is electron beam. There is a break in treatment due to Thanksgiving holiday and I am glad for it.

Yet, this round of treatment is far easier on my system than the prior round and Im not sure why. I have a somewhat good appetite, less nausea, less of a problem with diahrea etc. A nurse told me it usually is because of knowing whats coming and having less tension. I think I will just call it a blessing. Last round caused a loss of just over 20 lbs. So far the loss of weight is right at 2 lbs.

Taxotere and surgical castration is on the ever closing horizon yet I am not nearly as concerned over my health feeling as I do lately.

Last psa was 30~ in late Sept. It should drop once again after radiation.

Since I am in new territory with coming chemo, I have a question of sorts. Psa is Prostate specific Androgen correct? If it ( the cancer cells) mutate into whatever they mutate to, how important/reliable is a Psa reading ? Reasoning that before psa was around 155 with two metastises on bones, and now from 10 to 30 psa with much more bone involvement. Does this mean a closer spaced nuke bone scan is wise?

Post Edited (greetingz) : 11/27/2013 11:40:46 AM (GMT-7)

Posted 12/30/2013 7:34 PM (GMT 0)
Writing for my husband:

Diagnosed at 60th birthday:  7/3/12

Gleason: 9

PSA: 1400

Admitted with Renal Failure & metastasis

Lupron for 6 months; PSA back to 125

Casodex for 2 months; PSA back to 125

Currently enrolled in Clinical study combining Lupron, Zytiga and Xgeva, along with Demnosumab

PSA continuing to climb

Too early to say if effective

No chemo or radiation yet

Scans showed progression into hip joint and right femur, with some thickening over the past year

Curious if PSA is an indicator for Gleason 9?  Saw a post earlier stating it may not be a good indicator?

Posted 12/30/2013 8:41 PM (GMT 0)
Welcome to the forum!

Gleason scores indicate how mutated a cell is from normal and it seems the more mutated a cell is the more aggressive it is in growth because it no longer follows a DNA check. So higher gleason, more mutation. If psa is an indicator of Gleason someone with more knowledge than I should comment.
Posted 12/30/2013 10:10 PM (GMT 0)
myoho, sorry you have to be here but glad you found us. You're dealing with a serious situation, and this is a really good place to find some support for both of you. There are people here who can help with some advice, I'm sure.

I've seen studies that say the more advanced cases, like Gleason 9, may not produce as much PCa as lower-grade cases. The cells have become so degraded that they don't function much like prostate cells anymore, and thus don't produce as much PSA.

A high PSA alone doesn't really relate to the Gleason score. It's more related to the volume of PCa in the body. A 1400 PSA is quite significant, as you're already aware.

Be encouraged though, there are others on this forum with even higher PSA numbers and still doing ok a number of years later. There is hope!! Don't freak out too much from the dire information you'll find searching the internet.

*************************************************************************************
edit: myoho, I made a thread for you directly so you can have support for your questions. It is here:
https://www.healingwell.com/community/default.aspx?f=35&m=2949400

I hope you stop in. This is a very helpful forum
Posted 12/30/2013 10:54 PM (GMT 0)
I don't know how I missed this topic before, but, unfortunately, include me in it. Signature below.
Posted 12/30/2013 11:30 PM (GMT 0)
Redwing,

Again...good job with the list...very interesting and we 9s need to stick together.

Question for you:

You said, "I've seen studies that say the more advanced cases, like Gleason 9, may not produce as much PCa as lower-grade cases. The cells have become so degraded that they don't function much like prostate cells anymore, and thus don't produce as much PSA."

In the highlighted sentence, where did you get this information?  Curious because I've seen variable responses to therapies for those with PSA negative disease.  Meaning, I don't think we can generally assume that those cases that produce zero to little PSA will not respond well to the usual therapies and drugs and therefore do function pretty much like normal PC cells...they just don't produce that enzyme to any real degeree.  That's not to say that there are other low PSA producing PSA that don't respond well to therapies as well. 

With all things PC, there appears to be nothing that is completely 100%.

Thanks,

Jerry

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