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medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 7/24/2010 8:58 AM (GMT -6)   
Thought some of you might be interested in this, from Johns Hopkins:
 
 
 
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 7/24/2010 9:06 AM (GMT -6)   
Saw this yesterday and reviewed it with mixed emotions.

Thalidomide is one of the front line treatments for Multiple Myeloma which is the cancer my wife has. It has a propensity for DVT (blood clots) and my wife proved to be no exception. 7 days after beginning her treatment with it she a had a stroke. Luckily it was a minor one from which she recovered with no long term effects. However testing showed a 70% blockage of her carotid artery which required surgery to clear and put her off treatments for 3 months.

Seems like with everything else, they find ways of dealing with cancers but they always come with potential side effects, i.e. ED and Incontinence in our case. You get a little and lose a little.

But the potential for treatment with this drug is sure a bright sign they are looking in every corner for ways to combat PCa.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -scheduled
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/24/2010 9:25 AM (GMT -6)   
I can't get your link to work? But based on Sonny's wife experience with it, sounds very dangerous.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 7/24/2010 9:45 AM (GMT -6)   
Sorry about the link.  I can cut and paste the text of the Hopkins advisory here, but i did not want to violate anyone's copyright, if that is an issue.
 
Using thalidomide (or Revlimid) for prostate cancer is an off-label use.  And given the blood clot risks, I would certainly do this only under the supervision of a doctor who is experienced with it, and probably only in conjunction with an anticoagulant, such as coumidin/warfarin, or heparin.
 
But for people who have exhausted many other options, this could be worth asking about
 
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 7/24/2010 6:03 PM (GMT -6)   
Thanks for the link, Medved. Trying to find a link that works properly is not nearly as easy as I thought!

This is my best attempt so far:
http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/

Paste this directly into your browser address bar, removing any extraneous characters. Then when the page opens, click on the Thalidomide link currently at the top of the page. That works for me in both Firefox and Internet Explorer 8 (IE8).

Non working link below:

www.johnshopkinshealthalerts.com/alerts/prostate_disorders/JohnsHopkinsProstateHealthalert_3549-1.html

By James C: ok, the problem is the code contains some html symbols which they have included in the address, for some reason, symbols such as <b and such, to make parts bold or change colors, all inside the weblink address. Someone messed up. The only way I can find to get there is to carefully type in the addresses manually and go there. Even then, the second one asks me for registration.

That link should work but doesn't -- I think the forum software doesn't like something in the URL, which is a perfectly normal one and properly formed.

OK, final solution, but still not perfect. Paste this into your browser address bar:

http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/JohnsHopkinsProstateHealthalert_3549-1.html

This won't work directly for me either. The forum software changes the last part of the URL from "Alert_3549-1.html" to "alert_3549-1.html", so watch for that case change and correct it if necessary. Yes I did enter an upper-case "A" originally, and have gone back and edited it again just to make really, really sure. I enter upper-case, but it changes to lower case when I am not editing it! shocked

Armed with all this new found knowledge turn Medved's original link works after these edits:
1. Remove the <b></b> html tags in three places
2. Correct the lower case "a" to be upper case
I don't think there is anything wrong with the links as we have entered them -- it's just that the forum software wants to add its own enhancements :-)

Finally, an off the wall question: does drinking lots of fluids reduce the risk of blood clots?
Pre-op:
Age 63 at diagnosis, now 65.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve-sparing open surgery on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: 0.09 (maybe)
25-month: 0.2 (yes, bummer)
27-month: 0.2 (not up; glad about that)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. At 18 months, "graduated" to just the pump.

Post Edited (Piano) : 7/24/2010 11:58:15 PM (GMT-6)


Piy
Regular Member


Date Joined Mar 2010
Total Posts : 145
   Posted 7/25/2010 6:14 PM (GMT -6)   
Thalidomide is part of Dr. Leibowitz's protocol. Husband has been on Thalomid/Revlamid daily for a year. He also does nightly Innohep injections.
Dx June 2007 - age 48
davinci RRP October 2007
75% of prostate involved
Gleason 9
Positive margin
Scans clear
No detectable mets
SRT - February 2008
PSA:
At Dx:  8
Mar '09:  0.4
Jun '09:  0.7
Aug '09:  1.7
Feb '10:  .008
Apr '10:  .007
Commenced Dr. Robt Leibowitz "Three Pronged Approach" protocol in August 2009
Completed chemo Dec 28 2009

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