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Old 10-26-2012, 07:55 PM   #1
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prostate treatment stinks, even a decade later

been cured for almost a decade and am still sick with one symptom or another every day (from the treatments)

 
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Old 11-12-2012, 11:16 AM   #2
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Re: prostate treatment stinks, even a decade later

Sorry to hear you are still having problems - care to elaborate, see if anyone has any suggestion for alleviation or mitigation?
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Old 11-12-2012, 12:20 PM   #3
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Re: prostate treatment stinks, even a decade later

Quote:
Originally Posted by tumbleweed View Post
Sorry to hear you are still having problems - care to elaborate, see if anyone has any suggestion for alleviation or mitigation?
9 yrs later. I only had Lupron inj forabout 8 months but my natural testosterone production never re-started. Life without testosterone is helpful to decrease chance of recurrence, but life is bad with very low testosterone. No energy,no libido,no energy,depression.Drs won't prescribe testosterone gels, even though my PSA's have been close to nothing for years (less than 1) They think they are doing a good job but it is reasonable to use testosterone gel and monitor PSA. I had stage T2B Gleason 7. Concern was possibly beyond borders of both prostate lobes. I had 46 or 47 external radiation treatments. That damaged my large intestine permanently.I have diarrhea daily.Take Lomotil daily. This is 9 yrs later. Also I am impotent from the external radiation. What else. Urinating is difficult. Flomax 1 to 2 times a day. Nothing to do about it all. I'm just supposed to be happy I'm cured.

 
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Old 11-12-2012, 01:07 PM   #4
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Re: prostate treatment stinks, even a decade later

Yeah you have a load of troubles still - that comment about "you should be happy to be cured" wound me up the first time round (testicular cancer), the surgeon thought he had done his bit (actually using the phrase you quoted!)and I had to fight hard to get someone to sort out the last few cosmetic defects he did not acknowledge. Would some other medic might be more sympathetic (I had to threaten the hospital with legal action to get something done).

I hope things look up for you
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Old 11-12-2012, 09:16 PM   #5
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Re: prostate treatment stinks, even a decade later

chris134711,
Your story is a great example of why men should carefully consider Proton Beam Therapy. Sorry to hear of your trouble.
Good luck,
Bob

 
Old 11-13-2012, 02:11 PM   #6
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Re: prostate treatment stinks, even a decade later

Yep. It wasn't happening then.

I was mad for some years.

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Old 11-13-2012, 04:06 PM   #7
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Re: prostate treatment stinks, even a decade later

chris134711,
I came from Canada at the end of 2009 to be treated at Loma Linda using Proton Beam Therapy for salvage after a failed RP in 2001. James M. Slater M.D. Proton Center has been using all Protons to treat most prostate cancer since 1990 but will use a mix in some cases.
Bob

 
Old 11-13-2012, 04:41 PM   #8
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Re: prostate treatment stinks, even a decade later

Proton therapy is one of the older radiation treatments. That's why it's incomprehensible to me that none of them have published results since 2004, and what they have published shows results no better than IMRT. I can understand the newer centers not publishing because there just isn't enough data yet to draw a conclusion. But Loma Linda and Mass General are University hospitals where publishing is the norm -- or should be. It makes me suspicious that they're trying to hide something.

- Allen

 
Old 11-13-2012, 07:07 PM   #9
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Re: prostate treatment stinks, even a decade later

Nope. I talked to them. They have no peer-reviewed information after the 2004 Slater study. They and a proton booster group just give me the expected boosterism with no reliable data to back it up. As far as I'm concerned,anyone can make up any numbers they want, and the internet is full of such "data," but it's not reliable unless it's peer-reviewed. If they have supportable data, they ought to publish it.

Last edited by Administrator; 11-13-2012 at 07:42 PM.

 
Old 11-14-2012, 10:37 AM   #10
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Re: prostate treatment stinks, even a decade later

Quote:
Originally Posted by harpman View Post
chris134711,
I came from Canada at the end of 2009 to be treated at Loma Linda using Proton Beam Therapy for salvage after a failed RP in 2001. James M. Slater M.D. Proton Center has been using all Protons to treat most prostate cancer since 1990 but will use a mix in some cases.
Bob
Interesting. I probably would have been too ignorant to drive to Loma Linda then anyway (2003). But you came from Canada! Wow. And I bet your plumbing still works.

 
Old 11-14-2012, 02:18 PM   #11
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Re: prostate treatment stinks, even a decade later

Tall Allen,
I can only go by my experience then and the fact that numerous Proton Centers are being built to treat prostate and other cancers in the US and around the world. A recent study was published by Dr. Lee at MD Anderson but I don't know if it would satisfy your criteria.
Bob

 
Old 11-14-2012, 05:46 PM   #12
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Re: prostate treatment stinks, even a decade later

Dr. Lee presented a paper at ASTRO that said that urinary and rectal function didn't deteriorate with proton treatment, but sexual function did deteriorate significantly. It pretty much mirrors what Dr. J. Coen published last year on the Mass General experience, which showed not much difference from IMRT, except ED rates were worse with protons. I hope to see updated data on freedom from recurrence, stratified by risk group. I suspect it's improved a lot since the 2004 Slater study with improvements in techniques and dose escalation.

I think they are building more proton centers because they make money. Dr. Steinberg said he has plans to build one at UCLA to treat pediatric tumors but not prostate cancer. I don't think they're at all bad, other than it behooves them to justify the increased expense -- there's just insufficient data for me to evaluate it by.

- Allen

 
Old 11-14-2012, 08:47 PM   #13
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Re: prostate treatment stinks, even a decade later

Tall Allen,
Dr. Lee noted that further analysis indicated that patients who also received hormone therapy as well as proton, higher Gleason scores, were older when treated, and/or were more years past treatment were associated with decreased sexual function. This I believe is true of any treatment and that hormone therapy always leads to lack of sexual function. I had basically gotten back to normal seven years post surgery and then suffered ED a couple of months after starting Avodart on my urologist's advice. I wish I had never taken that stuff. Anyways I quit taking Avodart before I started Proton at which time I started taking daily Cialis and I'm getting along OK in that department now. I also have a prescription for 20mg Cialis which I cut in quarters or half as the occasion dictates or demands. I also find that using a one edged razor blade is far superior to a pill chopper.
My experience in dealing with the people I've met in our local prostate support group is that Proton is superior in maintaining sexual function.
Bob

 
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