So what does this Doc take for his PCa problems

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zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 12/28/2008 8:14 PM (GMT -6)   
Figure this is noteworthy for other PCa patients and survivors to think about. Now a leading cryo doctor whom is called the founder of cryo-therapy (won't use his name herein, you can figure it out or find it on your own, initials happen to be  Dr. F. L.) Well he has PCa and what does he take for it? This information is a few years old now but may still be his drug of choice for his treatments. How would I know about this, normally I wouldn't, but my Onco-doc whom is affiliated with the same Hospital is a friend of his and he happen to disclose it to me and others at a Prostate Cancer Support Seminar that my Onco-doc happens to run. So, I would say this is the real truth and rumored stuff.
 
Now I don't know if this doc had any other treatment, was not privey to that either way. But, does he take Zoladex, Lupron, Casodex, Avodart, Casodex, combos, estradiol patches, DES???
No but I was getting warmer on the last two mentioned above, he is taking Emcyt which you can read about on your own, I am not versed in it either but it falls into the similar category of estrogen type drugs like DES or Estradiol patch.  Noteworthy the doc does not use what most docs happen to prescribe to others!!!!!! He has the money to buy anything, btw.
 
Oh, if you did not know about Estradiol patch method, it may be quite useful. It is low cost pretty much and considered pretty safe to use, probably considered safer than DES. A doctor in Argentina (DR. Premoli)has alot of his patients on this with decent results and no blood clots or DVT's in any of them, atleast when I talked to him a couple of years back. He has published his findings somewhere I don't have the source but would be worth looking at, not probably our leading USA Journals either, although maybe by now it could be. Hey do people in foreign countries have all this money or insurance for LHRH and other $$$ drugs=NO so they do other things like this. USA does not own a monopoly on treatment ideas or methods.
 
cool  

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/28/2008 8:28 PM (GMT -6)   
Correction on prior post- 'Not' rumored stuff. You probably figured that by reading such.

Since I am replying to myself, I should have mentioned to others that LHRH drugs and probably most any of our drugs are much cheaper in foreign countries, makes us happy to hear that we are overcharged and marketed for having the best system in the world (which I sometimes question that, I question alot of things).

Lupron 3 months- here maybe $1500-2500 more or less
Lupron 3 months- Spain in USA dollars $400 told by local from there whom is in the industry and w/PCa

Just an observation, one of many on PCa related issues. Now for people without insurance and paying out of pocket, you no doubt feel good knowing such (sorry). Its good there are options and it is not a totally monopoly although some of the companies were banking on it. If don't believe me read about the lawsuits on zoladex and lupron and why they lost and had to pay out millions. They got caught doing payola to Doctors, kick backs, big screen tv's etc., in the name of $$$$$$, such a righteous country. I don't hate the drugs, just the marketing-methodology and profit issues. The drugs can be very useful its how they are pushed and priced that gets my goat.


Bob

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 12/28/2008 8:47 PM (GMT -6)   
OK D
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
Waiting to see if AUS gets better results
Complete hip replacement surgery coming up Jan 9, 2009


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 1/1/2009 1:14 PM (GMT -6)   

Hi Bob,

I am paying out of pocket (and through the nose smilewinkgrin ) and my research is similar to yours on the cost of treatment in the good ol USA. I do, however, have a very compassionate urologist who has been charging me a third of the published cost for the Luron 30 mg. He and my oncologist have both been very generous in discounting the cost of my hormone and radiation treatment. Reminds me of a doctor that my mother took us to when I was younger. Never charged my mom more than a few dollars for the visit and always gave her (yes gave) medicine samples for us kids. He passed away some years ago and I am sure that he is in a very good place. I suppose some still enter the medical profession with the desire to heal the sick.

 

Don 


Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
Chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
PSA test on July 14, 08 after 8 weeks hormone .82
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/1/2009 1:23 PM (GMT -6)   
Your doc did you well by doing casodex prior was the right protocol as in Dr. Strums book to prevent PCa flare. You might have to question how long to stay on this regimen. Keep looking at everything.
"Youth is wasted on the young"-W.C. Fields
 
"I wouldn't join a club that would have me as a member"-Groucho Marx


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/1/2009 3:01 PM (GMT -6)   
Maybe we can put these doctors in a wrestling match with Snuffy Myers...lol

The doctors are no different than the patients when it comes to finding what is most comfortable for them. My oncologist, who does not have a primary modality he practices, has suggested that if it were him, he would start with surgery. He contends that most PCa becomes HRPC first in the prostate. (My oncologist is N. Vogelzang) My RO said he would radiate. My urologists said surgery for them.

It is certainly interesting to see what doctors decide to do...But they are just like us when they choose what to do. And when you get to varying stages, perhaps the cryo guy did not have localized disease?, they will probably all choose a different modality.

Remember my joke in front of urologists and oncologists? If I ask 20 of them what I should do I will likely get 21 different answers...

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 1/1/2009 9:27:25 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/1/2009 4:31 PM (GMT -6)   
My family doctor of 13 plus years, at the time of my rising PSA's, said if it were him, he would go to Atlanta and get robotic surgery. His senior partner of his practice, a good GP, had PC real bad a few years ago, and went to Atlanta and did the same thing. I will have to ask my Urologist what he would have chosen with my specs, that would be interesting.

David
Age 56, 56 at DX
 
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
 
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
 
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. New appt. to see dr. on 1/5/9 as result.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/1/2009 7:02 PM (GMT -6)   
Pugatory- it is always interesting to throw back something for the doc to be put on the spot, his reaction, timing, and answer is worth our asking, its a good idea for its own sake (comparitively speaking).

Post Edited (zufus) : 1/12/2009 12:27:12 PM (GMT-7)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 1/1/2009 10:29 PM (GMT -6)   
Dr. Lee did intermittent for a while didn't he? My memory isn't fantastic but I thought he did.
Everyone pretty much knows his name as he's one of the masters of the color doppler untrasound.
 


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/1/2009 11:10 PM (GMT -6)   
zufus-

Have you asked any of the 8 docs you interviewed how much profit they make on the drugs they dispense?

And you wouldn't ask a doc for some names of referrals because of "good ole boy network" considerations?

Hmmm.l
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/2/2009 12:56 PM (GMT -6)   
Gordy I did ask my rad-onco- doc about the exhorbitant prices & variance costs of Lupron or zoladex and he told me the blunt truth(I also discussed it with my onco-doc the lastest doc in my joureny and have throughly discussed drugs -$$$-ridiculousness,etc., he has no problem with me taking DES-btw.) , they were not the ones selling it to me as you pointed out. I wish I would have asked more of my uro-doc when I had the chance. I was saying basically beware of the good ol boy network, my uro-doc sent me to his pal whom was sort of affliated with him, thus a good ol boy and that particular doc is the one whom wrote it down on paper in front of me (without reviewing my chart while I was in his prescence-fyi), "curative and 1% chance of incontinence" (actually handed it on paper- I definitively questioned that whole scenario). Like putting on paper makes it more valid or a "guarantee", I got another opinion lined up in advance for the next day at Henry Ford Hosp. for possible robotic-lapro by Dr. Menon whom I would say is amongest the most honest I ever met, he told me 'no way-I will not do surgery on you and he reviewed my chart/stats, did a DRE, and was straight forward about it. Does this show others why you need multiple opinions???? Does this show how crazy the PCa world can be??? If not then I tried....I lived this garbage it was life altering to go through.
Trying to raise awareness.
"Youth is wasted on the young"-W.C. Fields
 
"I wouldn't join a club that would have me as a member"-Groucho Marx


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/2/2009 1:08 PM (GMT -6)   
zufus-

I'm sorry, but I don't think your latest post addresses my question about asking docs how much profit they make: "Here are some questions that might change the expression on your doctors face (uro-docs): how much profit is made on Lupron (etc.)"

If I were without insurance and paying for meds and services myself I would absolutely ask what my costs would be. That is quite different from asking the practitioner how much profit (s)he makes.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/2/2009 8:11 PM (GMT -6)   
Gordy I am not saying for other patients to go out and ask the same question per se, it was to serve as an example. If you wonder about how straight forward your doc might be, ask a question that he would not expect to hear normally and see how he handles it, thats the point I was trying to make. You would feel kind of cheated like I did when you have two surgeons, 1 day apart tell you complete opposites about your treatment and outcome from such...i.e. it is a mind blower. And I was able to confirm that the first surgeon doc was totally lying to me.....I hope no other patient gets sold that bill of goods. I am sure I am not the only newbie in the PCa jungle whom got sold a less than straightforward, honest, truth. Sure, your experience could have been much different, maybe it all went smooth as glass. Based upon what I see on various boards by others, it is no cake walk and far from 'expert' full disclosure and sincereity.

Post Edited (zufus) : 1/12/2009 12:31:44 PM (GMT-7)


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/2/2009 8:42 PM (GMT -6)   
zufus-

First of all, I've fired many doctors in my search for a way out of the mess in which I find myself. Among the ones I fired were one I consider a quack and another in whom I had faith, but when the two of them started calling the other "a liar", I felt I had no choice but to be rid of both of them.

As to the pharmaceutical companies, I used to feel as you do, but when it came time to have my life on the line and dietary changes did nothing to help, I embraced the drug companies. Hipocrisy? Sure! Guilty. But, at this point, the only hope I have is with the drug companies, and the medical profession, with which I wasn't that delighted either, before my diagnosis.

The trial drug I'm on now works wonders for those with a particular kind of leukemia. Bristol-Myers Squibb is now conducting clinical trials to determine if the same drug will work on certain solid tumors. Is BMS being altruistic? Of course not. They're in it to make money. But, you know what? I don't care why they're doing it if it saves my life. I will extol BMS's virtues until the day I die.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/3/2009 10:46 AM (GMT -6)   
Amen to you Gordy a good fighter, same reasons I take DES, I'd take whatever if it works.

So, we have seen the beautful side of docs and such, it exists.

Good results to you brother and all of us whom quest for more and better alternatives.
"Youth is wasted on the young"-W.C. Fields
 
"I wouldn't join a club that would have me as a member"-Groucho Marx


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/3/2009 10:51 AM (GMT -6)   
So be it, zufus

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/3/2009 1:17 PM (GMT -6)   
Gordon do you know about yahoo groups like hrpca@yahoogroups.com (search or send email to that address, guys like Howard Hansen are at this researching probably daily, might have something for you to look over) Just a suggestion. I drop in and look over somethings once in awhile, it is for hormone refractive patients benefit exclusively, alot of share informations and peoples struggle with PCa.

Bro-Bob
"Youth is wasted on the young"-W.C. Fields
 
"I wouldn't join a club that would have me as a member"-Groucho Marx


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/3/2009 1:46 PM (GMT -6)   
Not familiar with that one. Thanks.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!

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