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Posted 2/28/2012 3:58 PM (GMT 0)
god bless all

brief history: radiation for locally advanced pc in 1997(jeez-has it been 15Years living with pc)

psa now at 50 and after countless treatments, my oncologist wants other treatments before chemo.

i just got approved for provenge(only FDA approved treatment for pc  in usa that uses  your immune system to fight pc- and it just got approved by medicare).

does anyone have important info on provenge? it seems pretty basic- they remove white cells-send them to locations throughout the usa-at these locations the cells are treated- then they are sent back to your doctors and placed into your body.

there are many treatments for advanced pc besides chemo. the most important advice i would give  is to see an oncologist. they are experts in cancer. urologists are experts in organs. this darn cancer is like no other. for example, patients that have colon or breast cancer with simliar conditions, are given simliar prognosis. pc is different. it is truly a homogeneous cancer. everyone reacts differently. some patients with good numbers do poorly and some patients with bad numbers do well. a great example is manny hamelburg - a legend in boston. he had horrible numbers and after chemo, he is in his 20th year and doing great. check out his websites. i read of his amazing story in a magazine in 1997 after i received very bad news.

i finally met him later that year, and he inspired me and i never gave up hope since.

god bless all of you  carrig from boston

Posted 2/28/2012 7:47 PM (GMT 0)
Thanks Caring for all your info. and particularly the good news you share.

we need all the positive stories  and good news we can hear.

Jim and Marie

in Il.

Posted 2/28/2012 8:42 PM (GMT 0)
jim and marie---- i guess they are giving you hormonal treatment to shrink the tumor and then follow up with additional treatments. that is standard treatment. that is what i had done in 1997 at age 49. i saw 3 urologists and 3 oncologists in 1997 and made the decision to go with radiation because it had spread. well it's been 15 years and even though my psa is now climbing very fast, my bone and cat scans are still negative. the cancer is still in the bio chemical micro stage. i am not sick and can run 10 miles at age 64.

But my docs want a more aggresive treatment now-ie progence

i rely strickly on my oncologists. my urologist is basically out of the picture. they have no idea why i am doing so well. they think there is something in my body that reacts well to treatment.

i think you will do great from what i've read. did they do an ultra sound scan to view the tumor? i was happy to see both of you replied. my wife has been my greatest treatment. at the beginning we went to support groups, but for the past dozen years we rely on each other. i have had pc everyday for over 15 years and if i never had a psa test, i would be considered cancer free.

if you need any help, don't hesitate to blog..    carrig from boston

Posted 2/29/2012 1:23 AM (GMT 0)
hey carrig

I 'm the same way. I recovered from surgery quickly, exercise every day and even on Lupron I have

no side affects.the bad news for me is that I had node and svi . My PSA was higher after surgery.

we did go to one RO who said radiation now and one week later , a well known Med ONC who said no

radiation due to a less than 10% chance of getting all the cancer. for now we are sticking to his plan.

next app. on March 8th along with 2nd shot. My psa had gone down to .9 from a 6.9 reading after

surgery. that was a two month check of a 4 month shot, so we are thinking it should be much further

down by now. we shall see.

I always sign both our names . That;s how important she is for me in this journey.

take care

Jim and Marie

Posted 2/29/2012 8:44 PM (GMT 0)
"I always sign both our names . That's how important she is for me in this journey.
take care
Jim and Marie"


I love you, daddy!!!

I did finally get an account on here, but I've been "shadowing" and not really posting anything. Seeing you write this brings tears to my eyes...

You and momma are so lucky to have each other, and I am THE LUCKIEST to have the two of you as parents.

Love,
Leslie (and Matt and Mickey!!!...and Oliver, and Olso...and Clarence...etc.)
Posted 3/1/2012 8:13 AM (GMT 0)
Carrig11

I am one of the few members that have experienced Provenge last year. I went in and was diagnosed with some nasty PCa and decided to have surgery with a RRP open cut. My oncologists told me and strongly recommended I delay surgery and have the three treatments and then have the operation. It was a hard decision but in hind sight I am glad that I did. I was in a very small study group of only 40 that were just Dx and were committed to surgery. As far as I know, all forty had the three treatments prior to surgery. I was randomly selected for a fourth treatment post surgery which I had in late July.

As you will see in my signature, I had bad biopsies and even worse pathology. Somehow I am at non-detectable coming up on ten months post surgery. I will never forget my medical team on my first PSA post surgery at six weeks, they looked at the screen, were quite, opened up my case file and read the notes, and then went back to verify the data on the computer were correct and even called the lab to make sure they had the one PSA results for me. After a ten minute drill, they said wow, we sure didn't expect you to be non-detectable at this stage.''In fact, I had lined up my radiologist oncologist and medical oncologist and were all geared up to immediately start HT weeks after surgery and then start IMRT six weeks after the hormones started.

So hopefully, it is due to Provenge and you will see a benefit with your cancer battle.

Let me know if I can answer any questions.

Good luck.
Posted 3/1/2012 3:43 PM (GMT 0)
devastated- amazing story. never heard of provenge being administerd as ist treatment. it seems to have great results. i.m happy for you and appreciate the info. i'm guessing that the provenge, at the very least, greatly improved your immune sysem.
i.m basically in a holding stage now with advanced pc. after 15years of taking lots of treatments.
my scans are still negative but have a rapid rise in psa. my docs wanted something to take before i had to have chemo.
i'll be taking provenge now, and then maybe metaformin(meds for diabetes) in about 12 months.

like you i had very bad numbers 15 years ago at age 49. i decided on radiation and have luke warm feelings about my decision. my scans are clean, but for whatever reason, my dead,radiated prostate starter growing 15 months ago. it affected my two ureters(tubes that go from the kidney to the bladder-not to be confused with the uretha.) so now not only am i dealing with the darn pc, i also have to deal with possible kidney damage due to urine backing into the kidneys.
but i don't look. the radiation gave me a normal live for almost 15 years.
i wish you all the best. you have gotten amazing help. i'm still a little stunned over your story. remember we are not statistics. we are individuals who will fight this cancer to the end. god bless carrig from boston
Posted 3/1/2012 3:57 PM (GMT 0)
jim and marie-- i'm a pretty stong individual and very seldom lose control. but i'm telling you that the post from your kids filled me with so much emotion(sadness and happiness at the same time) that i'm blown away. i can't remember when three lines affected me so much. they know how special you two are to them, and it's specially rewarding that your kids know that both of you feel the same. wow-what a great family.

all of you will have many,many happy years together. god bless carrig from boston
Posted 3/1/2012 4:36 PM (GMT 0)
You're right carrig. I'm still wiping my tears this a.m. and I read it yesterday!

Took me by surprise. Ddn't now she had gotten on this web site.

Even with PC, I'm so blessed in so many ways.

God be with you as well.

(by the way, that was my youngest of two daughters. the other names included her dog and 3 cats)

Jim and Marie

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