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Old 12-10-2009, 12:08 PM   #1
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Invitation for comments-Questions to follow

As one of the outstanding members of this board (IADT3since2000 aka Jim) might put it, I was originally “challenged” with a diagnosis of prostate cancer in early 2007. First time ever PSA tests came in at 298 and 263. Biopsy of 12 cores showed 8 were cancerous – Gleason scores of 7 cores at 3+4 and 1 core at 4+4. CT, Bone and MRI scans not showing any metastasis. Did hormone therapy (Lupron & Casodex) and received radiation therapy. Response to hormone therapy was very good - PSA’s came down to .3 during IMRT radiation and everything seemed good by July of ’08 when radiation ended and I stopped taking hormones at that time.
Went in for 6 month PSA check in Jan of ’09 and found my case had become a bit more “challenging” – PSA up to 7.2. I continued to consult with radiation oncologist which in hindsight was a mistake. PSA’s continued to rise all during ’09 – from that January score of 7.2, April – 42.5, May – 67.3, July 202.4 and beginning of August – 235.8. A bone scan in June still showed no metastasis.
During these months, doctor is saying that rising PSA is most likely dying cancer cells and soft tissue damage, both from the radiation treatment, putting out higher than normal PSA. He kept saying that they should turn down at any time although I could tell he was becoming more and more uncomfortable with diagnosis. He also kept claiming that it was not necessary to start hormones again as long as the cancer not showing in bone (hence the negative bone scan in June reinforced diagnosis).
By August, I asked to be referred to Moffit Cancer Center where I had found a clinical trial that might possibly apply to my case. The clinical trial was interesting but I mainly wanted to see a medical oncologist who knew more about prostate cancer than my radiation doctor. I’m still amazed that the radiation doctor did not admit that my case had progressed to a stage that his expertise no longer applied.
To try to make a long story a little shorter, I ended up being excluded from the trial at Moffit - had to have a clean bone scan from less than 60 day prior (Mine from June was by then 90 days old). New bone scan at end of Sept showed metastasis to bone along with PSA now up to 416 ng/mL. I’m sure William Bendix as Chester A. Riley would have said – “What a revolting development this is”.
However, I at least now have my case being treated by a medical oncologist. But I still have not found a doctor in FL who is a prostate cancer specialist and I believe that until I do, I am choosing the treatment I feel I need and consulting with doctors at Moffit to discuss. I have re-read “A Primer on Prostate Cancer” by Dr.Stephen Strum and Donna Pogliano and also “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers. I have spent a lot of time reading past newsletter articles published by PCRI and have set up lines of communication with a lady named Jan Manarite who handles the “Helpline” for PCRI. I plan to participate in this board where I can see there is available some very outstanding advice being given from a patient’s perspective.
At the end of Sept I have started on ADT triple blockade (6 month shot –Eligard, 50 mg casodex daily, Avodart daily). My first evaluation test was encouraging – testosterone level of 35 ng/dL and PSA reading of 18.5 (taken late Oct and down from the late Sept reading of 416). I’m starting Zometa infusions in January. Will look at testosterone and PSA levels again in January - am scheduled for next Eligard shot and bone scan in March ’10.
I also have some questions to ask but they can wait. I invite anyone on this board to make any comments, suggestions or observations after reading this; and I thank you for your time in reading it.
Right now, my only comment is one of self-encouragement – “GAME ON”

John S.

 
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Old 12-10-2009, 05:37 PM   #2
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kcon HB Userkcon HB User
Re: Invitation for comments-Questions to follow

"GAME ON"....I truly like that.

Welcome; I wish you success.

Your case is outta my league, but I wanted to issue my support for your "GAME ON" view.

 
Old 12-11-2009, 08:05 AM   #3
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Re: Invitation for comments-Questions to follow

John - this is also very much out of my league but I think you bring up an excellent point.
"..... I’m still amazed that the radiation doctor did not admit that my case had progressed to a stage that his expertise no longer applied...."

Having not been there I have no idea if this is true - but what I do know is that there are far too many doctors who take the view similar to this. As my wife (a medical professional) has said many times ... You see a surgeon for an opinion and they will want to "cut" because that is what they do. We need doctors that look at our complete case and are able to give you a good idea of the options. This is true in cases like yours that start out one way and take a turn the other. I am sure your doctor started out on the right course - but once it got beyond that he/she should have given you a set of options. That said, we as patients need to understand that doctors are human and as such they make mistakes. When they do we tend to run right to the lawyers and that has also got to change (notice I did not say stop as there are some mistakes that should be investigated).

I wish you well and hope you are know at a place that can give you the full medical work-up and advice along with a set of options.

MrMike

 
Old 12-11-2009, 11:32 AM   #4
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sonofsten HB User
Re: Invitation for comments-Questions to follow

To kcon and mrmike,

My case outta your league? No way! ....maybe different treatment divisions, but definitely in the same league of encouragement and support....and I thank you for yours.....

John S.

 
Old 12-11-2009, 04:59 PM   #5
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IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: Invitation for comments-Questions to follow

Hi John,

Wow, what a roller coaster ride you have been on! At least your situation is now looking good with that late October PSA of 18.5! I believe you will continue to have a great response to triple hormonal blockade therapy. I'll join in congratulations for the attitude you have achieved and the success you have engineered as a now empowered patient. Impressive! I'll add some thoughts to an excerpt of your first post, in green.


Quote:
Originally Posted by sonofsten View Post
As one of the outstanding members of this board (IADT3since2000 aka Jim)

Thank you for your kind thought!

might put it, I was originally “challenged” with a diagnosis of prostate cancer in early 2007. First time ever PSA tests came in at 298 and 263. Biopsy of 12 cores showed 8 were cancerous – Gleason scores of 7 cores at 3+4 and 1 core at 4+4.

The doctors I follow would want some kind of combination therapy, such as radiation plus longer term hormonal therapy, not just brief adjuvant therapy that might have been primarily intended to shrink the prostate.

CT, Bone and MRI scans not showing any metastasis. Did hormone therapy (Lupron & Casodex) and received radiation therapy. Response to hormone therapy was very good - PSA’s came down to .3 during IMRT radiation and everything seemed good by July of ’08 when radiation ended and I stopped taking hormones at that time.
Went in for 6 month PSA check in Jan of ’09 and found my case had become a bit more “challenging” – PSA up to 7.2. I continued to consult with radiation oncologist which in hindsight was a mistake. PSA’s continued to rise all during ’09 – from that January score of 7.2, April – 42.5, May – 67.3, July 202.4 and beginning of August – 235.8. A bone scan in June still showed no metastasis.
During these months, doctor is saying that rising PSA is most likely dying cancer cells and soft tissue damage, both from the radiation treatment, putting out higher than normal PSA. He kept saying that they should turn down at any time although I could tell he was becoming more and more uncomfortable with diagnosis.

I'm not comfortable with your former doctor's view in January with your PSA of 7.2, but I can understand it as a call at the very liberal end of arguably sound medical practice - could have been a rather large "bounce" after radiation. But, because of your initial case presentation and that rather high post radiation PSA, I have a lot of trouble with his decision to wait until April to get the next PSA. The fact that he did nothing when your PSA hit 42.5 in April leads me to think he really does not understand prostate cancer. That he did no more than order the bone scan in the next few months strikes me, as a layman, as inexcusable in 2009.

He also kept claiming that it was not necessary to start hormones again as long as the cancer not showing in bone (hence the negative bone scan in June reinforced diagnosis).

For years some eminent institutions and doctors had a position of non-intervention after initial treatment until there were signs of metastasis or the appearance of symptoms of advanced prostate cancer. Johns Hopkins was one of them, though I think they now may be more ready to intervene. But to me, such delay is most unwise, especially considering what we know in the closing years of this decade!

By August, I asked to be referred to Moffit Cancer Center .... I’m still amazed that the [initial] radiation doctor did not admit that my case had progressed to a stage that his expertise no longer applied.

You could consider refering the doctor's management of your case to the state medical society. It may not be a clear case of malpractice, but I personally hope this doctor does not treat any other patients with challenging cases of prostate cancer!


.... New bone scan at end of Sept showed metastasis to bone along with PSA now up to 416 ng/mL. ...
However, I at least now have my case being treated by a medical oncologist. But I still have not found a doctor in FL who is a prostate cancer specialist and I believe that until I do, I am choosing the treatment I feel I need and consulting with doctors at Moffit to discuss. I have re-read “A Primer on Prostate Cancer” by Dr.Stephen Strum and Donna Pogliano and also “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers. I have spent a lot of time reading past newsletter articles published by PCRI and have set up lines of communication with a lady named Jan Manarite who handles the “Helpline” for PCRI.

I'm impressed with Jan. She organized a group of survivors to support approval of Provenge at the FDA. She has worked for and with PCRI for some time and is dedicated.

....
At the end of Sept I have started on ADT triple blockade (6 month shot –Eligard, 50 mg casodex daily, Avodart daily). My first evaluation test was encouraging – testosterone level of 35 ng/dL and PSA reading of 18.5 (taken late Oct and down from the late Sept reading of 416).

The doctors I follow would advise an increase in Casodex to 150 mg a day, based on your case and the metastasis, I think, though your PSA is dropping so nicely that maybe 50 mg per day is enough. It looks to me as if you are now on a sound program with a good chance of success!

I’m starting Zometa infusions in January. Will look at testosterone and PSA levels again in January - am scheduled for next Eligard shot and bone scan in March ’10.

It would probably be wise to also get DHT and 25-hydroxy vitamin D tests then.

...
Right now, my only comment is one of self-encouragement – “GAME ON”

John S.
"GAME ON" indeed! Have at it!

Jim

 
Old 12-12-2009, 11:39 AM   #6
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sonofsten HB User
Re: Invitation for comments-Questions to follow

Hi Jim,

Thanks for your reply. It was very encouraging to hear that you think my triple blockade treatment has a chance of continued success.

I had started this thread saying there were questions to follow and Jim's response has triggered some more questions so I'll start with them. However, I invite anyone to jump into thread.

Jim-you mention upping the dosage of the casodex.....I'm not averse to an increased dosage but since so far,as you say,the PSA is dropping nicely and also,the side effects have been very mild (milder even than first adjuvent hormone therapy?...perhaps,caused by the change from 3 mos shot of Lupron to 6 mos shot of Eligaard?) But if the PSA keeps declining, perhaps the "bullet" of 50 mg is enough,and I can hold the "bigger bullet" of 150 mg in reserve.
Also you said...."It would probably be wise to also get DHT and 25-hydroxy vitamin D tests then".....I assume "then" meaning in March?

Other questions:
The monitoring of "the biology" of my cancer, as Dr.Strum would call it ,is presently on a schedule as follows:

January '10--Start Zometa but don't know how often to have treatment.....once a month??....quarterly?? I had a Bone Mineral Density Dexa-Scan done a few months ago and I am going to obtain the T-Score results from that test(I know there is the more accurate QCT BMD scan but Medicare doesn't cover it in FL, so I'll use the Dexa-Scan and save a few bucks).....knowing the T-score might help determine frequency but I don't think the bone situation will be too bad yet.
Also January '10
Check testosterone level(striving for <20 ng/dl), check PSA using hypersensitive assay(striving for that .05 ng/ml or even lower).

March '10
Bone scan to see what the hot spots that showed up in Sept'09 scan look like(there were only a few)....hoping that 6 mos of ADT3 at least kept them in check. Also checking PSA and testosterone again.

Anyone with comments?.....Thanks

John S.

 
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