Advanced (stage 4) group: I'm looking... - Advanced Prostate...

Advanced Prostate Cancer

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Advanced (stage 4) group

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I'm looking for a group that "deals' in stage, 3,4 prostate cancer,

cancer that has spread beyond the prostate into lymph nodes

and bones. does such a group exist?

18 Replies
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hinersin, You are in the right place. Welcome, please share a little about your medical history and feel free to ask any questions and provide feedback and insight to others.

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Hidden in reply to JoelT

Could you "direct" me to the advanced, metastatic "area"? With all due respect to the early stage men, I have no interest in such matters. I need information (which i found on the Yahoo site) regarding end stage drugs and strategies. It's difficult at best to find Chuck Maack and his invaluable posts.

Darryl
DarrylAdministrator in reply to Hidden

As Joel correctly pointed out, you are indeed in the advanced prostate cancer community. And, Chuck is here, too.

motosue
motosue in reply to Hidden

hinerism,

Joel is equally knowledgeable in our cancer fight. 

Wilfred

Hidden
Hidden in reply to motosue

I don't quite understand what you mean by "equally knowledgeable".

motosue
motosue in reply to Hidden

Like others have said, Chuck is here on these posts so you should be able to find him.  I thought you wanted to look for chuck so I said that Joel can answer questions  that we may have on our Stage 4 cancer also too. Sorry for the mix up on my part if I confused you by my reply.

Wilfred  

About 98% of this group, as well as their posts are men with advanced Prostate Cancer.

hinerism I too as well am dealing with stage 4 prostate cancer. I was diagnosed 2013, Gleason score 9, bone mets. I have had radiation to my prostate as well as my L3. Tumor on L3 removed in Sept. back in Nov. Radiation again to L3. I am in a wheel chair, in the process of Jevtana chemo, however, I have had neutropenic fever putting me hospital for 12 days and then ileus which has put me back in for 2 more days. My ileus is still active and I am trying to find out how I am to handle the ileus. So I hope this information helps you know that advanced prostate cancer men are here too.

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Hidden in reply to Jonlaco

Hello,

Thank you, I appreciate you taking the time to share information with me and others.

Hi Hinduism,

My husband has prostate cancer to his lymphs and bones. You can review my intro. You found the right place. This is a great group willing to share and provide insight.

I was diagnosed in 2006 with high grade metastatic cancer stage 4, and given a year to live ,I am still here and enjoying every day even more. I have never had a clear bone scan in 10 years. You are in the right spot , it may take a few days to get going, maybe you could present your stats , and ask some questions.

Dan dx,2006 , gleason 10 , bpsa 148, stage 4

Jonlaco
Jonlaco in reply to Dan59

Dan59 what treatments have you had? I bet hearing a year to live was a punch in the stomach. You are the first gentleman I have heard of having a Gleason score of 10, I am a Gleason 9 and thought WOW how am I going to survive this? I have had a rough go and I am still fighting, even though I am now in a wheel chair (L3 tumor) I try to keep my spirits up and continue with treatments. Where has your cancer mestatized (sp) in your body? I am very interested in what treatments you have completed.

Dan59
Dan59 in reply to Jonlaco

IJon sorry for not responding sooner, Mine was in my ribs, in my lower spine by l2 and originally thought to be in my shoulder, more recently I have a spot in my right acetabulum and my right hip, along with many nodes and clumps of nodes, when first diagnosed it was thought to be in my lung , but later tha was determined to be a benign unrelated event. I have been on zolodex , zometa , triple dose casodex, nilandron, estrogen patches,High dose ketoconazole, zytiga and xtandi

You are in the right place. I was DX'd eleven years ago with Stage 4 Prostate Cancer with mets to T3 & L2. Did a chemo trial. Have not had treatment since February 2010 and still maintain a PSA of <0.0. Good luck. Keep kicking the bastard. gourd_dancer.

motosue
motosue in reply to gourd_dancer

Hi Gourd,

can we hear your story of treatments too?

Wilfred

I began writing a reply, that disappeared before I had the opportunity to finish.  I'll start over.  I have stage 4 prostate cancer in my spine and lymphatic system.  I am on Lupron aka Eligard every- injection 6 months, next due in July 2016.  My psa went from 37.7 to Zero.  You can read a detailed account of my journey beginning in 2009 at yana.com (You Are Note Alone) or go to this link for my page

yananow.org/display_story.p...

Feel free to contact me, if there are any questions you may have about my journey.

Good luck and don't let yourself be define by prostate cancer- live life on your terms

Hi Hinerism, I am aged 49, with recently diagnosed Gleason 10, Metastatic PCa in dozen or so spots on my skeleton (though I'm not in any pain). I am new to this group, but I think you're in the right place. Cheers Paul.

Yes! And you have found it. I was #4 non-op mets bladder ,2lymph nodes lit up, urethra blocked due to APC Tumors. Kidney failure , emerged from hospital with tubes out of kidneys trough my back and a foley for over a yr. it was hell. I recommend avoiding that. 50 yrs ago I would have benn dead. So I’m here due RT &Adt along with all holistic measures taken from the start. There is so much informed experiential advice here, that any question or advise that you seek will be answered from someone that has been exactly where you are at now. There are thousands , you are not alone by any means.

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