RE: Question-

July 13, 2012

Sounds like the Casodex and Lupron are keeping the PSA values low. Wish we had a group of oncologists who could chime in, rather than single patients. Good luck. My mother, who is 88, has managed her osteoprosis over the years. She has shrunk, no doubt. I wonder if you have lost height? I was on Lupron for 7 months after a 30 day regimin of bicalutimide. Near the end of the seven month mark I realized that I had lost an inch. Got to keep up with those calcium/vitamin D tabs. Regards, T A little about me- I am 48- ok- young- I know- strike one. 2 spots on the ribs- ok- strike two. I was diagnosed in 2009 and had a RP in October. The Post Op PSA was approx 8. After this I was put on Lupron, and due to my osteoperosis I was placed on Zometa as well each coming every 3 months. I knew the guy I was going to wasnt an expert- but I thought he wasnt giving me bad care. The PSA dropped to <0.1 for 6 months- went to .5- and then 3.4 all in 3 month intervals. Knowing I had one shot at this- I switched to Loyola University in Chicago- seeing a Doctor Flannigan who is the Dept Chair. In Aug of 2011 he added cassodex, and I am quickly below <0.05 for 3 shots- and have been on a vacation since March. I go in again in August and the way I feel, I would be suprised if it jumped- I feel really great. Which leads me to my queston- I had a dexa scan in Jan of 2010 which showed osteoperosis- and the note, a severe risk of fracture. Hence the Zometa. I had a repeat dexascan which showed completely normal. I just had this. Dr. Flannigan is leaning toward me forgoing the zometa- but having the bone mets- and the normal dexascan now- the Zometa was the only thing I was doing for this. I welcome any thoughts, I am scheduled at the end of the month- I just didnt cancel it yet- should I push for this- or just let it go, thankful that the osteoperosis seems to be a thing of the past (I know....for now). Thanks for the help- this board certainly informs all. Tim

July 13, 2012

I would like to know where QCT's exist. When I ask folks I am always told DEXA scans. I do not have a need now but is there a set of recognized places? Thanks

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July 13, 2012

I would like to know where QCT's exist. When I ask folks I am always told DEXA scans. I do not have a need now but is there a set of recognized places? Thanks

____________________________________________________________

Fast, Secure, NetZero 4G Mobile Broadband. Try it.

July 13, 2012

I would like to know where QCT's exist. When I ask folks I am always told DEXA scans. I do not have a need now but is there a set of recognized places? Thanks

____________________________________________________________

Fast, Secure, NetZero 4G Mobile Broadband. Try it.

July 13, 2012

I would like to know where QCT's exist. When I ask folks I am always told DEXA scans. I do not have a need now but is there a set of recognized places? Thanks

____________________________________________________________

Fast, Secure, NetZero 4G Mobile Broadband. Try it.

July 14, 2012

Sent: Friday, July 13, 2012 2:27 PM

> A little about me- I am 48- ok- young- I know- strike one. 2

> spots on the ribs- ok- strike two.

> I was diagnosed in 2009 and had a RP in October. The Post Op

> PSA was approx 8. After this I was put on Lupron, and due to

> my osteoperosis I was placed on Zometa as well each coming

> every 3 months. I knew the guy I was going to wasnt an expert-

> but I thought he wasnt giving me bad care. The PSA dropped to

> <0.1 for 6 months- went to .5- and then 3.4 all in 3 month

> intervals. Knowing I had one shot at this- I switched to

> Loyola University in Chicago- seeing a Doctor Flannigan who is

> the Dept Chair. In Aug of 2011 he added cassodex, and I am

> quickly below <0.05 for 3 shots- and have been on a vacation

> since March. I go in again in August and the way I feel, I

> would be suprised if it jumped- I feel really great.

> Which leads me to my queston- I had a dexa scan in Jan of 2010

> which showed osteoperosis- and the note, a severe risk of

> fracture. Hence the Zometa. I had a repeat dexascan which

> showed completely normal. I just had this. Dr. Flannigan is

> leaning toward me forgoing the zometa- but having the bone

> mets- and the normal dexascan now- the Zometa was the only

> thing I was doing for this. I welcome any thoughts, I am

> scheduled at the end of the month- I just didnt cancel it yet-

> should I push for this- or just let it go, thankful that the

> osteoperosis seems to be a thing of the past (I know....for

> now).

Tim,

I'm very far from an expert, but my first thought is that you

should not assume that you are out of the woods on osteoporosis.

From what I know about the problem, it doesn't just magically

clear up, as yours is said to have done, even with bisphosphonate

treatment. The bisphosphonates help with the problem but, as far

as I know, they don't make it go away.

After reading Chuck's reply to you, I'm even more concerned that

your osteopenia/osteoporosis problem is not as controlled as the

scans make you think.

If you haven't already done it, I recommend that you go to a

library and get some books on osteoporosis and learn what you can

do to reduce your risk. Exercise of various types is usually

recommended as the best thing to do, and that is also a great

thing to do on hormone therapy. In this case, if you have ever

had a problem with osteoporosis, you should do what you can to

reduce the risk even if the problem really has cleared up.

I'm also interested in the quick drop in your PSA after adding

Casodex to your treatment. What that suggests to me is that the

Lupron did not lower your testosterone level as much as desired,

or did not hold it low. Adding Casodex does not lower your T

level but it does partially block the uptake of T into the cells,

which has the effect of lowering T levels inside the tumor cells.

I suggest asking for a test to find out what your T level is.

Not all doctors do that, but it seems to me that if a doctor is

going to put you on therapy to lower your testosterone level, it

would be good to find out how well it worked by actually

checking.

Finally, I suggest that you look into adding Avodart to your

treatment. Chuck Maack has written some good patient oriented

material on this. See his website references in his postings.

It seems to me that, so far, your treatment has been average at

best. It's not clear to me that the doctor who performed a

prostatectomy should have done it, and not clear to me that

anyone is thinking through what's going on instead of just

reading test results and saying, " this means that and that's all

there is to it. "

It is tough to be diagnosed with metastatic prostate cancer at

such a young age. I recommend that you learn what you can about

the disease and find the best doctor you can find. That may be

the Dr. Flannigan, but if you think it's not, then look for

another. I believe that all doctors do a better job when the

patient learns the facts on his own and can discuss his case

intelligently with the doc, and press for the best care.

Every case is different, but you should know that there are a

number of men in this group have been metastatic for 15 years or

more and are still alive, still walking around, still pain free.

Furthermore, I believe that we have seen some significant

improvements in treatment in just the last year, especially

Zytiga and Enzalutamide, and a successful Phase I trial in

targeted chemotherapy was just announced that may enable men to

get heavy doses of chemotherapy drugs directly into the cancer

cells, while reducing the dosage to the rest of the body. I'm

hoping that will be a breakthrough in treatment, though only time

will tell.

So the bad news is, you have cancer. But the good news is, there

is a possibility that you will still live into old age and have a

good life.

Best of luck.

Alan

July 14, 2012

Thank you for the thoughtful response. I have learned volumes from this group and one other site that I have found. It enabled me to know enough to kick the first doctor to the curb. At the beginning of the process you are overwhelmed with information you don't know which way to go. At this time I believe I am in a good place at Loyola, he is the dept chair and is on the list of Chicago's top doc's.

Oh...did I tell you I had thyroid cancer (hurtle cell), and several malignant melanomas. All were caught early and the early concern was the rib spots were the other cancer. I had 2 negative PET scans- so the other cancers were ruled out. I have read your response a couple times and I know I need to do my homework on the info Chuck sent. I agree with you- while a nice thought- I don't think the osteoporosis magically disappeared.

Things I have learned from since I have been diagnosed.

Finding an expert is key. I was really uneasy with what was going on. I think in the past I had B- care, I think its probably A- care. Its not perfect, but I agree with needing the knowledge to get the right care. If anyone is reading this and doesn't feel they are going to an expert, please do so.

And the last thing I have learned- I have to live life. I am on my 3rd year of this thing, and anyone on this board certainly has there mind working from time to time. But I learned to live every day- enjoy every day- and don't sweat the small stuff- it isn't worth it. I am on the 14th day of a 17 day Florida vacation- I hiked with my wife over 5 miles today. I have to make dinner- while she is in the pool.

Thanks to all who take the time to reply- and Chuck- I have thanked you before- I have learned alot.

Tim Ebert

To: "ProstateCancerSupport " <ProstateCancerSupport >Sent: Sat, July 14, 2012 10:59:26 AMSubject: Re: Question-

Sent: Friday, July 13, 2012 2:27 PM > A little about me- I am 48- ok- young- I know- strike one. 2> spots on the ribs- ok- strike two.> I was diagnosed in 2009 and had a RP in October. The Post Op> PSA was approx 8. After this I was put on Lupron, and due to> my osteoperosis I was placed on Zometa as well each coming> every 3 months. I knew the guy I was going to wasnt an expert-> but I thought he wasnt giving me bad care. The PSA dropped to> <0.1 for 6 months- went to .5- and then 3.4 all in 3 month> intervals. Knowing I had one shot at this- I switched to> Loyola University in Chicago- seeing a Doctor Flannigan who is> the Dept Chair. In Aug of 2011

he added cassodex, and I am> quickly below <0.05 for 3 shots- and have been on a vacation> since March. I go in again in August and the way I feel, I> would be suprised if it jumped- I feel really great. > Which leads me to my queston- I had a dexa scan in Jan of 2010> which showed osteoperosis- and the note, a severe risk of> fracture. Hence the Zometa. I had a repeat dexascan which> showed completely normal. I just had this. Dr. Flannigan is> leaning toward me forgoing the zometa- but having the bone> mets- and the normal dexascan now- the Zometa was the only> thing I was doing for this. I welcome any thoughts, I am> scheduled at the end of the month- I just didnt cancel it yet-> should I push for this- or just let it go, thankful that the> osteoperosis seems to be a thing of the past (I know....for>

now).Tim,I'm very far from an expert, but my first thought is that youshould not assume that you are out of the woods on osteoporosis.From what I know about the problem, it doesn't just magicallyclear up, as yours is said to have done, even with bisphosphonatetreatment. The bisphosphonates help with the problem but, as faras I know, they don't make it go away.After reading Chuck's reply to you, I'm even more concerned thatyour osteopenia/osteoporosis problem is not as controlled as thescans make you think.If you haven't already done it, I recommend that you go to alibrary and get some books on osteoporosis and learn what you cando to reduce your risk. Exercise of various types is usuallyrecommended as the best thing to do, and that is also a greatthing to do on hormone therapy. In this case, if you have everhad a problem with osteoporosis, you should do

what you can toreduce the risk even if the problem really has cleared up.I'm also interested in the quick drop in your PSA after addingCasodex to your treatment. What that suggests to me is that theLupron did not lower your testosterone level as much as desired,or did not hold it low. Adding Casodex does not lower your Tlevel but it does partially block the uptake of T into the cells,which has the effect of lowering T levels inside the tumor cells.I suggest asking for a test to find out what your T level is.Not all doctors do that, but it seems to me that if a doctor isgoing to put you on therapy to lower your testosterone level, itwould be good to find out how well it worked by actuallychecking.Finally, I suggest that you look into adding Avodart to yourtreatment. Chuck Maack has written some good patient orientedmaterial on this. See his website references

in his postings.It seems to me that, so far, your treatment has been average atbest. It's not clear to me that the doctor who performed aprostatectomy should have done it, and not clear to me thatanyone is thinking through what's going on instead of justreading test results and saying, "this means that and that's allthere is to it."It is tough to be diagnosed with metastatic prostate cancer atsuch a young age. I recommend that you learn what you can aboutthe disease and find the best doctor you can find. That may bethe Dr. Flannigan, but if you think it's not, then look foranother. I believe that all doctors do a better job when thepatient learns the facts on his own and can discuss his caseintelligently with the doc, and press for the best care.Every case is different, but you should know that there are anumber of men in this group have been metastatic for

15 years ormore and are still alive, still walking around, still pain free.Furthermore, I believe that we have seen some significantimprovements in treatment in just the last year, especiallyZytiga and Enzalutamide, and a successful Phase I trial intargeted chemotherapy was just announced that may enable men toget heavy doses of chemotherapy drugs directly into the cancercells, while reducing the dosage to the rest of the body. I'mhoping that will be a breakthrough in treatment, though only timewill tell.So the bad news is, you have cancer. But the good news is, thereis a possibility that you will still live into old age and have agood life.Best of luck. Alan

July 14, 2012

Thank you Alan. That made me feel better. (¯`v´¯).`·.¸.·´ ¸.·´¸.·´¨) ¸.·*¨)(¸.·´ (¸.·´ .·´ ¸ JackieTo: ProstateCancerSupport From: ameyer2@...Date: Sat, 14 Jul 2012 07:56:53 -0700Subject: Re: Question-