Looking for other stage IV PC to learn from

Haven't posted for a while. Briefly, found out in Oct Husband had PC. Gleason 3+4 and 4+3, 80% and 20%. Bone scan clean. Davinici surgery Dec 2011. Removed prostate, lymph nodes, seminal vesicle. Pathology from surgery showed PC in lymph nodes, bladder and seminal vesicles, Gleason 9. We just moved back to Northern Virginia this week to continue treatment. I would really love to talk to someone who also has stage 4 PC. Everything I read is pretty bad, but there has to be some hope out there.

hope4thebest said...
Haven't posted for a while. Briefly, found out in Oct Husband had PC. Gleason 3+4 and 4+3, 80% and 20%. Bone scan clean. Davinici surgery Dec 2011. Removed prostate, lymph nodes, seminal vesicle. Pathology from surgery showed PC in lymph nodes, bladder and seminal vesicles, Gleason 9. We just moved back to Northern Virginia this week to continue treatment. I would really love to talk to someone who also has stage 4 PC. Everything I read is pretty bad, but there has to be some hope out there.

Hope4the best,
I am a stage T4 treated in 1992 with a radical prostatectomy followed by an orchiectomy (physical castration) when the cancer had escaped the prostate and invaded both seminal vesicles and the rectal wall. I was given 4 years to live then, but here I am 20 years later at age 78.

Hope, there is always hope that your husband will respond to further treatment and one important difference is that today he will have access to the newest therapies available and many more on the research pipeline. If I can help you in anyway, I'll be more than glad to help. I urge you both to remain positive and since you are in VA, try to seek the counsel of Dr. Charles Myers in Earlysville (close to Charlottesville). He is a medical oncologist who is a prostate cancer survivor. Wish you the very best.

RalphV

Goto www.yananow.net   and lookup on going experieces/mentors of hundreds of patients, some with your scenario and see what they did, how they are fairing and some have emails to contact....it is a great thing on the internet, thanks to Terry H. et al.

Yeah I am one of those survivors too and my story is there too, approaching year 10 soon and so far doing well enough to be a happy camper, but I fight dirty (LOL) and get envolved in my decisions for therapies big time (fired some docs too), starting with 8 opinions back in 2002. What a trip mi amigo....get a cyber education asap is the best free education you will ever see. My stats were worse than what you posted basically and had total urniary blockage and started in emergency room, then shipped to uro-doc and the 'fun' began. Ralph's story is perhaps the greatest success story I have seen in a high risk sort of incureable scenario and winning!!!!

The good news is I am still ranting and raving, on PCa issues...so as to extend needed full disclosures on this anomolie.  Bad news.....I can forecast that one, but prefer to enjoy the current and even add humor...maybe it is laughing in the face of death....we aren't in armor fighting emenies anymore (dark ages)....this one you fight on your terms, so be as valiant or outlandish as you need to be. Here is the forum f

Post Edited (zufus) : 1/2/2012 12:21:31 PM (GMT-7)

In your situation, and living in Virginia, I would certainly consult Dr Myers.   I am in Atlanta and my uro has a number of patients for whom he collaborates with Dr Myers.   I have decided that if I need advanced care I would either see Myers or Oliver Sartor in New Orleans.   My understanding is that he won't file your insurance papers and his fees are set independent of insurance negotiations.   Thus, you pay him and then get reimbursed for some portion from your insurance.

     Hope4thebest,

My dad was diagnosed with PCA in April 2011,Gleason9 Stage4 with exstensive mets to the bone. He began hormone therapy immediatly which only kept his psa down for the first 3months.  He had to undergo some radiation last month for some spinal compression at t10. He is feeling better now, but is about to begin chemo with docetaxical?  His psa has tripled in a six month period of time. He is still feeling fairly well and remains pretty active.  Will let you know how the chemo helps him, but don't lose hope, there are lots of new treatments on the horizon.

Harriet

Hope4thebest,

Your username reflects the attitude from which you must not waiver. I am stage 4 with significant symptomatic skeletal involvement. I have seen oncologists at U of Penn in Philadelphia, Sloan Kettering in NYC and most recently Charles Myers in Virginia. I was most impressed with Myers and I am currently following his treatment plan. It's a frightening place that you are in. We understand your fears. Education is your best medicine for now. Gather opinions and learn about your adversary. This forum is a wonderful tool. Use it when you need information, counsel, a sounding board and even sympathy. We are a one stop shop. Keep us informed. Best of luck.

Jim

Hi hope. Stage4 here. I don't know what to say. I think your screen name says it all. I get frustrated a lot when I read the posts from the lucky guys who were able to be cured. They talk about wet diapers and when thier catheters came out and how long it will be until they are sexually functional again. Sometimes I don't think they realize how lucky they are. I would do anything to be one of them. I would love to be wetting my pants every day just to hear my doctor say congrats we got it all you have beaten cancer. Sometimes when I post I can't see the screen through the tears. Those are my weak times. We all have them. It's okay but it is a place that we cannot muust not stay. As a good friend tells everyone at this site. STAY POSITIVE. Attitude and faith are everything when it comes to the fight. We must take the fight to this disease. We must feed our bodies and feed our spirits and stay strong. We must be selfosh at times and do the things we want to do and never miss an opportunity to see the beauty of this world and the wonder of tthis life. We must first and foremost decide that we want to live. The rest is easy. Every single man woman and child on this earth is terminal but stage 4 Pca. Is not a death sentence. This is the best time in the history of the world to have prostate cancer. There is a ton of money and research being thrown at it and they are going to beat this disease up and take It's lunch money. Stay strong. Hope for the best. Live your life to the fullest And never miss a moment. Every man dies. Not everyman lives. Best regards. Todd
p.s. at the time of my diagnosis i was stage four and given a year to live. It has been 67 months. There is hope, Hope

Thanks for the advice and the wisdom of experience. At this point, Dr. Meyers is not an option for us if he doesn't take insurance. My husband had just started a new job in Austin when we found out about the Cancer. We decided to move back to VA where our support system is, so he no longer has a job. Fortunately, I had not yet quit mine, so we do have health insurance and a house to live in! We will take this one day at a time and I will check out a couple of the web sites mentioned above.

Hope4TheBest,

I tried replying to your email but it keeps bouncing back. If you have another email you want me to send it to, please send it to the email in my profile and I will forward my reply.
Thanks!