Kicked out of the Club

Trew

klauren said:

zero club
Hi Larry,
I'm fairly new to this site, but i see entries by you in here all the time. I am the wife of a 55 year old man who was diagnosed last October at age 54. His post-op PSA was 50. Had a RP on Jan. 4, 2010. Recovery went very well. Surgical biopsy revealed bi-lateral positive margins, gleason 4+4 and pentration of capsule and invasion of seminal vesicles. Staging T3b. 3 month post op PSA was 0.34. six weeks later PSA was 35.0! surgeon was shocked. talk about doubling time! He started him on Lupron and Casodex therapy. Had his first injection in May and his quality of life has been severely diminished. Terrible hot flashes (almost constant) sweats, weakness of muscles (mostly his legs) and diminished cognitive abilities and loss of drive. awful, awful therapy for him. But it seems this is all he can do. Apparently it's doing its job since he just had another PSA last week and it is now immeasurable (does that put him in the "zero club"?! But he is still in a terrible dilemma as far as whether he wants to continue this protocol. Any advice? He's leaning toward opting for some quality rather than quality. no one seems to be able to give us a straight answer as to whether this protocol will actually extend life.
You seem to be very well read and versed on this dreadful disease. Please write me with your input when you can. Sorry to hear your PSA is on the rise. You'll beat it!
my prayers are with you.
klauren

The hormone treatment is a
The hormone treatment is a nightmare existence in many ways. Mrs. Trew told me this morning something about looking on the positive side- I am still with her. I will hold to that thought for now.

lewvino

klauren said:

zero club
Hi Larry,
I'm fairly new to this site, but i see entries by you in here all the time. I am the wife of a 55 year old man who was diagnosed last October at age 54. His post-op PSA was 50. Had a RP on Jan. 4, 2010. Recovery went very well. Surgical biopsy revealed bi-lateral positive margins, gleason 4+4 and pentration of capsule and invasion of seminal vesicles. Staging T3b. 3 month post op PSA was 0.34. six weeks later PSA was 35.0! surgeon was shocked. talk about doubling time! He started him on Lupron and Casodex therapy. Had his first injection in May and his quality of life has been severely diminished. Terrible hot flashes (almost constant) sweats, weakness of muscles (mostly his legs) and diminished cognitive abilities and loss of drive. awful, awful therapy for him. But it seems this is all he can do. Apparently it's doing its job since he just had another PSA last week and it is now immeasurable (does that put him in the "zero club"?! But he is still in a terrible dilemma as far as whether he wants to continue this protocol. Any advice? He's leaning toward opting for some quality rather than quality. no one seems to be able to give us a straight answer as to whether this protocol will actually extend life.
You seem to be very well read and versed on this dreadful disease. Please write me with your input when you can. Sorry to hear your PSA is on the rise. You'll beat it!
my prayers are with you.
klauren

Klauren,,Sorry to hear about
Klauren,,Sorry to hear about your husband....Actually right now my PSA is 0...The nurse told me the psa level wrong on the phone...When I saw the doc he said it was 0...So good for now with my positive margin.

Yes...I'm on this forum lots! I love to help others...So many helped me last year when I went through the diagnosis, surgery, etc. so just trying to help likewise.

Yes also I have read tons! My Dad had PC back around 1997 and he is still doing great so when the cancer struck me....learned even more!

On the Harder cases though I've not read much about them...Are they sure on the PSA of 35 and not .35 or some other number? From what i read I would suggest the following...
see if they can do the test where they put in sometype of radioactive material that will go to the cancer site...forget the name of the test...But that would show if it has mestacised in our area.
Also I would strongly, strongly suggest you check out healing well prostate cancer forum on the web. They have a very, very active group over there with men, women that have tons of experience with this beast. I check both forums frequently. I personally like the format here better but the other one will get you QUICK answers since they have a larger membership base.

Good luck and keep in touch!

Larry age 55 PSA 0
Gleason 3+4 7
one positive margin

gumbyrun

lewvino said:

Klauren,,Sorry to hear about
Klauren,,Sorry to hear about your husband....Actually right now my PSA is 0...The nurse told me the psa level wrong on the phone...When I saw the doc he said it was 0...So good for now with my positive margin.

Yes...I'm on this forum lots! I love to help others...So many helped me last year when I went through the diagnosis, surgery, etc. so just trying to help likewise.

Yes also I have read tons! My Dad had PC back around 1997 and he is still doing great so when the cancer struck me....learned even more!

On the Harder cases though I've not read much about them...Are they sure on the PSA of 35 and not .35 or some other number? From what i read I would suggest the following...
see if they can do the test where they put in sometype of radioactive material that will go to the cancer site...forget the name of the test...But that would show if it has mestacised in our area.
Also I would strongly, strongly suggest you check out healing well prostate cancer forum on the web. They have a very, very active group over there with men, women that have tons of experience with this beast. I check both forums frequently. I personally like the format here better but the other one will get you QUICK answers since they have a larger membership base.

Good luck and keep in touch!

Larry age 55 PSA 0
Gleason 3+4 7
one positive margin

Welcome back!
Welcome back to the club! I would like to use a club on that nurse! Oh well, all's well that ends well?!