Re: getting worried

[Guest guest]

Dave,1st-, sign on to the advanced prostate cancer listserv at: http://health.groups.yahoo.com/group/advancedprostatecancer/join

2nd- Get yourself to a medical oncologist who treats prostate cancer, most urologists are not experienced enough with the ins & outs of advanced prostate cancer.  3rd- On the advanced site post your problem and your complete history including PSA tests with dates, treatments and medications (with dates). 

 

Went last week and had another bone scan done because I have been having a lot of leg and shoulder pain. Talked to the uro on the phone yesterday and tells me it has spread to the bone. Not a good day for me yesterday. They have me on a new medicine, bicalutamide. Have another appt. with uro on Sept. 14th so will find out more then.

Also, my PSA which had previously gone way done to 6.0 went to 60 and my most recent PSA test shows it went up a little more, but uro didnt say exactly what it is now.

Getting really worried now. Once it goes into bone it's pretty much over as I understand it.

Dave

-- T Nowak, MA, MSWDirector for Advocacy and  Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer, TogetherSurvivor - Recurrent Prostate, Thyroid, Melanoma and Renal Cancers

www.advancedprostatecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare.com - information and support about prostate cancer

http://health.groups.yahoo.com/group/advancedprostatecancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer

[Guest guest]

> Went last week and had another bone scan done because I have been

> having a lot of leg and shoulder pain. Talked to the uro on the

> phone yesterday and tells me it has spread to the bone. Not a

> good day for me yesterday. They have me on a new medicine,

> bicalutamide. Have another appt. with uro on Sept. 14th so will

> find out more then.

> Also, my PSA which had previously gone way done to 6.0 went to 60

> and my most recent PSA test shows it went up a little more, but

> uro didnt say exactly what it is now.

> Getting really worried now. Once it goes into bone it's pretty

> much over as I understand it.

Bone mets are a serious development, but can be treated by a

real cancer specialist, a medical oncologist. I recommend that

you consult one ASAP, preferably one who is well-educated in

treatment of PCa.

The uro, unless very unusual, is a surgeon and nothing more.

Good luck.

Regards,

Steve J

[Guest guest]

Dave is this Bicultamide plus lupron or Zoledex?

getting worried

Went last week and had another bone scan done because I have been having a lot of leg and shoulder pain. Talked to the uro on the phone yesterday and tells me it has spread to the bone. Not a good day for me yesterday. They have me on a new medicine, bicalutamide. Have another appt. with uro on Sept. 14th so will find out more then.Also, my PSA which had previously gone way done to 6.0 went to 60 and my most recent PSA test shows it went up a little more, but uro didnt say exactly what it is now.Getting really worried now. Once it goes into bone it's pretty much over as I understand it.Dave

[Guest guest]

Don't know. Have been getting Zoladex shots every three months for past 9 months. Bicalutamide is something new they are doing.

Dave

To: ProstateCancerSupport Sent: Tue, August 31, 2010 12:47:25 PMSubject: Re: getting worried

Dave is this Bicultamide plus lupron or Zoledex?

getting worried

Went last week and had another bone scan done because I have been having a lot of leg and shoulder pain. Talked to the uro on the phone yesterday and tells me it has spread to the bone. Not a good day for me yesterday. They have me on a new medicine, bicalutamide. Have another appt. with uro on Sept. 14th so will find out more then.Also, my PSA which had previously gone way done to 6.0 went to 60 and my most recent PSA test shows it went up a little more, but uro didnt say exactly what it is now.Getting really worried now. Once it goes into bone it's pretty much over as I understand it.Dave

[Guest guest]

Dave, It always concerns me when I read

statements like yours <snip> Getting really worried now. Once it goes

into bone it's pretty much over as I understand it. <snip> because it ain’t

necessarily so. I was told I my disease had metastasized to the bone four years

ago and I certainly don’t think it is ‘pretty much over’ for

me!!

I don’t want to minimize your

concerns or the fact that advanced prostate cancer that has metastasized to the

bone can be extremely dangerous, BUT……as Aubrey Pilgrim used to say

time and again The Golden Rule Of Prostate Cancer Is That There Are No Rules.

There is a multiplicity of variants in the disease itself; our own metabolism

can change the outcome; treatment effects vary widely. The most important thing

is not to give up hope, to seek knowledge and the best advice you can get from

the best oncologist you can find.

You might also go to the Indexes on my

site and look for the stories of men with T4 diagnoses because that means they

had metastasis when diagnosed. Many people discount the value of anecdotal

evidence, but if you start at http://www.yananow.net/Chart-Gleasonu6.htm#8

(which shows the men with Gleason Scores of 8 or higher, since those diagnoses

are more often associated with metastasized disease), you will see the stories

of men who have died but you will also see stories of men for whom it was not ‘pretty

well over’ and who are still battling on – one man on

(http://www.yananow.net/Mentors/H.htm

) who was diagnosed in 2002 – eight years ago. Mail these men, ask them

for guidance in what they did and why. Of course they can’t tell you,

with your particular diagnosis what you must do, but they can from their

collective knowledge, perhaps point you in a direction that might be useful to

discuss with your chosen oncologist.

And never give up hope.

All the best

Prostate men need enlightening, not

frightening

Terry Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Dave

Sent: Wednesday, 1 September 2010

4:01 AM

To: ProstateCancerSupport

Subject:

getting worried

Went last week and had another bone scan done because

I have been having a lot of leg and shoulder pain. Talked to the uro on the

phone yesterday and tells me it has spread to the bone. Not a good day for me

yesterday. They have me on a new medicine, bicalutamide. Have another appt.

with uro on Sept. 14th so will find out more then.

Also, my PSA which had previously gone way done to 6.0 went to 60 and my most

recent PSA test shows it went up a little more, but uro didnt say exactly what

it is now.

Getting really worried now. Once it goes into bone it's pretty much over as I

understand it.

Dave

[Guest guest]



Dave looks like you have a number of options left, don't get measured up for a wooden overcoat yet, I have known men in your position who have lived over 11 years.

Enjoy your life fill it with pleasure not worry

getting worried

Went last week and had another bone scan done because I have been having a lot of leg and shoulder pain. Talked to the uro on the phone yesterday and tells me it has spread to the bone. Not a good day for me yesterday. They have me on a new medicine, bicalutamide. Have another appt. with uro on Sept. 14th so will find out more then.Also, my PSA which had previously gone way done to 6.0 went to 60 and my most recent PSA test shows it went up a little more, but uro didnt say exactly what it is now.Getting really worried now. Once it goes into bone it's pretty much over as I understand it.Dave

[Guest guest]



One thing you might get them to consider is zoledex plus bicultamide, keep us up to date with how things go. If this next treatment can give you a boost it will help extend towards the 11years. I can't nor can anyone tell you how long you will live, we prefer to give you the maximum we have seen for someone like you to give you something to aim for. Hope it works for you.

Vitamin D helped me, I don't know if it can hep you, but worth a try.

I hope the bicultamide which acts to block testosterone that is made in another gland other than the testes, zoledex tries to block production of testosterone from the testes

getting worried

Went last week and had another bone scan done because I have been having a lot of leg and shoulder pain. Talked to the uro on the phone yesterday and tells me it has spread to the bone. Not a good day for me yesterday. They have me on a new medicine, bicalutamide. Have another appt. with uro on Sept. 14th so will find out more then.Also, my PSA which had previously gone way done to 6.0 went to 60 and my most recent PSA test shows it went up a little more, but uro didnt say exactly what it is now.Getting really worried now. Once it goes into bone it's pretty much over as I understand it.Dave

[Guest guest]

Hi Dave,

I wish I could say more - I'm new to PCa as my husband was recently diagnosed,

so I do not fully understand everything about the disease. But I wanted to tell

you that my thoughts and prayers are with you.

Sandy

>

> Went last week and had another bone scan done because I have been having a

lot of leg and shoulder pain. Talked to the uro on the phone yesterday and tells

me it has spread to the bone. Not a good day for me yesterday. They have me on a

new medicine, bicalutamide. Have another appt. with uro on Sept. 14th so will

find out more then.

> Also, my PSA which had previously gone way done to 6.0 went to 60 and my

most recent PSA test shows it went up a little more, but uro didnt say exactly

what it is now.

> Getting really worried now. Once it goes into bone it's pretty much over as

I understand it.

>

> Dave

>