Medical Forum / Diseases and Disorders / Prostate Cancer / March 2006
Advise after RP failure
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JoelNowak@finchrealty.com - 20 Mar 2006 21:27 GMT First my History:
10/01 Lap RP; Gleason 4+3; T2bNOMx; tumor extended into but not through capsule, clean margins and lymph nodes; highest PSA was 7.3 prior to surgery
02-04 PSA- .5 (all prior PSAs were not dectable) 11-04 PSA- 3.57 12-05 PSA- 45.00 and retest of 43.29 01-06 PSA- 87.9
During the month of 12-05 I had a number of scans, x-rays etc with the following clinical findings: Bone scan - Negative MRIs - one lymph node was seen as enlarged and I had a large tumor in my left kidney
During the month of 01-06 I had a Radical Nephrectomy - Clear Cell Type Renal Carcinoma with Furman Grading of 2; pT2 pNx I also started ADT receiving Casodex and Lupron
03-06 PSA - .5 MRI- Lymph node was not dectable
I did discuss with my Doc receiving Radiation to the prostate bed to go after the lymph node (I am sure it is still there, just not visible). He indicated that if it was in one lymph node it is in others, just microscopic. He felt that I would not receive any benefit from rediation.
Does anybody have any insight or thoughts about this? Is his anaylsis correct?
Although the ADT is working and I have recovered from the kidney surgery I am wondering if there is anything else I can be doing?
Please don't bring up the issue that my PSA went from .5 to 45 over one year's time. The Doc who was monitoring me really messed up and I messed up by not insisting that I receive copies of all the reports (a thing that everyone else must do so as not to duplicate my error). I know he is guilty of malpractice and I am guilty of neglect. My family and I are paying the price and we will continue to pay the price....so please do not bring this into your replies.
Thanks for any positve ideas or thoughts anyone may have. I am working on staying positive in my life and my health.
Joel
billscancercure@yahoo.ca - 20 Mar 2006 23:15 GMT Read Bill's Cancer Cure.
Steve Jordan - 21 Mar 2006 00:52 GMT > Read Bill's Cancer Cure. Another cancer quack scam, perhaps?
Steve J
"A man's most valuable trait is a judicious sense of what not to believe." -- Euripides
billscancercure@yahoo.ca - 21 Mar 2006 03:48 GMT Steve,
I hope Joel Nowak doesn't die because of your foolish comment. Steve you obviously enjoy being a bully.
JoelNowak@finchrealty.com - 21 Mar 2006 17:12 GMT Steve, I don't know what your issue is but I can only wish that you resolve it so that you can make peace with yourself. I don't want to spend my time, which will be limited, feeling bitter or upset with anyone. So I wish you only the best. Joel
I.P. Freely - 21 Mar 2006 20:51 GMT > Steve, I don't know what your issue is but I can only wish that you > resolve it so that you can make peace with yourself. I don't want to > spend my time, which will be limited, feeling bitter or upset with > anyone. So I wish you only the best. > Joel Joel, Steve is just killing two birds with one SEND. He's venting against our all-too-frequent snake oil promoters and making sure you know ginger root and Cat's Claw are snake oil. Both birds feel good, and the latter could just save you from wasting a lot of time stumbling down a garden path to nowhere. A little bitterness (key word" "little") is a GOOD thing, IMO, as it motivates us to stand up to wrong-doers. If we spend all our time avoiding confrontation, the world sort of falls apart -- and Joel treats his cancer with snake oil.
I.P.
Alan Meyer - 21 Mar 2006 01:36 GMT Joel,
Sorry to hear of your misfortune.
It is more than likely that, even had you discovered the recurrence earlier, it would still have been too late for radiation. The rapid rise of PSA may indicate a very early metastasis. So don't beat yourself up over that. Had you known earlier, radiation might have been tried but there is an excellent chance that it would have failed - leaving you with cancer plus radiation damage instead of just cancer.
I'm not a doctor, but it is my understanding that once the cancer is outside the prostate, radiation is only used to treat painful spots. It won't halt the systemic growth of the cancer, just kill some cancer cells at the specific place it's aimed at. So, for example, if you develop a painful metastasis at some particular bone that is accessible to radiation, radiation might relieve the pain.
I'm glad to hear that the HT is working. For some men it works for a long time and for others only a short time. Like so much with this disease, it's a crapshoot. Someone recently reported that he has been on HT for 9 years with no rise in PSA, but other guys only get a year or so. Francois Mitterand, the former President of France, had metastatic cancer throughout his tenure as president, and apparently got 15 years out of his HT. I'm hoping you're in the winner's circle on this particular game of craps.
If you're not being treated by a medical oncologist specializing in prostate cancer, I suggest you try to find one. There is more than one way to do HT, and it might make a difference to get the way that works best for you. I recommend you search this newsgroup for Ed Friedman's postings - an expert in the group who has been arguing for some specific HT approaches.
Also, ask about or search for clinical trials. There are some promising experimental treatments in trials and, if the HT stops working for you, or even if it doesn't, you might want to be ready to try some of them.
Trials can be found listed at: http://www.cancer.gov/clinicaltrials
You can search there for Type="prostate cancer", stage= "recurrent prostate cancer", type of trial="treatment".
In addition to those, there are also trials listed under "Solid tumor, unspecified adult". PCa is a solid tumor cancer and there are many trials of drugs intended to fight any solid tumor.
Best of luck.
Alan
MAS - 21 Mar 2006 08:28 GMT I echo what Alan had to write. We all hope things work out. If you want to get real aggressive, I might suggest a Medical Oncologist who has researched Prostate Cancer and Kidney Cancer for 25 years - Robert Amato with Baylor College of Medicine and Methodist Hospital in Houston, Texas. He has a number of articles available via Google
Best of luck in beating the bastard down.
Mike
> Joel, > [quoted text clipped - 50 lines] > > Alan Steve Kramer - 22 Mar 2006 00:06 GMT > I did discuss with my Doc receiving Radiation to the prostate bed to go > after the lymph node (I am sure it is still there, just not visible). [quoted text clipped - 15 lines] > and I are paying the price and we will continue to pay the price....so > please do not bring this into your replies. I am not a doctor, but I agree with your doc. Your PSA, as I understand PSA behavior, is acting like metastasizes. Radiation, besides screwing up your plumbing, would probably have no effect whatsoever.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum
JoelNowak@finchrealty.com - 23 Mar 2006 17:30 GMT hanks for the feedback. I do have an additional question pertaining to the ADT. Will the "hot flashes" and other temperature regulating issues abate over time or will they continue as long as I continue the ADT?
Steve Jordan - 23 Mar 2006 18:56 GMT On March 23, JoelNowak@finchrealty.com inquired:
> Will the "hot flashes" and other temperature regulating issues abate > over time or will they continue as long as I continue the ADT? As we are each different, no one can say with certainty.
However, there are txs for hot flushes. It seems that many medics are unaware of them.
They are:
They are:
1. Megace (megestrol acetate): some concern has been expressed by one medic that it might encourage PCa development where the tumor has mutated. Unfortunately, there appears to be no way to be certain whether this has occurred. Nonetheless, I do know that it is used successfully to relieve hot flushes.
2. Paxil (paroxetine hydrochloride), an antidepressant. A side effect is to relieve hot flushes.
3. Effexor (venlafaxine hydrochloride), an antidepressant. Same story.
4. Depo Provera (medroxyprogesterone, a synthetic form of the female hormone progesterone), the "label" use of which is as a female contraceptive. In the 400 mg (contraceptive) dosage, a study (Marx et al.) has demonstrated excellent results in relief of hot flushes among men on ADT (androgen deprivation therapy).
I selected this tx to relieve my hot flushes (6 per night + days) from Trelstar (triptorelin pamoate), which with Lupron and Zoladex is one of the LHRH agonists used to castrate PCa patients chemically thereby depriving PCa cells of an essential nutrient, testosterone (T).
In my case, I chose Depo Sub-Q Provera 104mg, the "label"use of which is palliative tx of endometriosis. In August 2005, I received 104 mg in each anterior thigh. I have not experienced even one hot flush since then. How long this will continue is anyone's guess.
However: one must be aware that progesterone is metabolized into testosterone, and should take care that one's PSA is sufficiently low that a rise in T will not be harmful. In my case, my PSA rose from 0.01 ng/ml to 0.02, then subsided to 0.01, which I feel is more than satisfactory.
Caveat: what works for me may not work for anyone else in the universe!
In the USA, such use of these drugs is "off-label" which is to say not approved by the US Federal Drug Administration. The practical effect of this is that the use of the drugs for relief of hot flushes will not be paid for by insurance carriers.
I (1) am not sure of the dosages except for Depo Sub-Q Provera, and (2) do not know the out-of-pocket costs of the off-label use, again with the exception of Depo Sub-Q Provera (US$200 for two pre-loaded syringes + $25 for the injection at my medic's office).
I consider the cost to have been well worth the result.
Had a bit of fun with my medic and his staff after the injections. Sighed and observed that from now on I would be unable to ovulate.....
Regards,
Steve J
Steve Kramer - 24 Mar 2006 02:57 GMT My hot flashes were minor from the start and dissipated to nothing in short order. Maybe a couple of months.
But, it is different for everyone.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum
> hanks for the feedback. I do have an additional question pertaining to > the ADT. Will the "hot flashes" and other temperature regulating > issues abate over time or will they continue as long as I continue the > ADT? Alan Meyer - 24 Mar 2006 04:38 GMT > ... I do have an additional question pertaining to > the ADT. Will the "hot flashes" and other temperature regulating > issues abate over time or will they continue as long as I continue the > ADT? I was only ADT for 4 months worth of injections, 5-6 months actual androgen deprivation.
I had hot flashes every hour or so. I got used to them and they didn't really bother me too much. They'd wake me up at night. I'd toss the covers off, sweat for a couple of minutes, then go back to sleep. I wasn't bothered enough to seek any treatment for them.
After my wife had them for years, I couldn't very well complain about them. Besides, every time I got a hot flash I'd think, "These drugs are really working." :)
Alan
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