Medical Forum / Diseases and Disorders / Prostate Cancer / March 2008
HDR monotherapy
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doofy - 21 Mar 2008 03:47 GMT Has anyone gone through HDR monotherapy?
Effectiveness?
Side-effects, short-term, long-term, permanent?
Jeff - 21 Mar 2008 04:35 GMT > Has anyone gone through HDR monotherapy? > > Effectiveness? > > Side-effects, short-term, long-term, permanent? No but I'm interested as well. This outfit seems to have the most extensive experience and a lot of info: www.cetmc.com
doofy - 21 Mar 2008 05:18 GMT >>Has anyone gone through HDR monotherapy? >> [quoted text clipped - 4 lines] > No but I'm interested as well. This outfit seems to have the most > extensive experience and a lot of info: www.cetmc.com That website feels like its advertising hard. Makes me leery. I had a consultation with California Pacific Medical Center today, where I heard about the treatment.
I'm leery of radiation in general because it seems "dirty", i.e. gets in too many unwanted places.
I'd like to see some long term numbers on recurrence, side-effects, etc.
Steve Kramer - 21 Mar 2008 09:40 GMT > That website feels like its advertising hard. Makes me leery. I had a > consultation with California Pacific Medical Center today, where I heard > about the treatment. Yeah, you have to be wary of those. We don't get hit as hard as some newsgroups, but we do get an occasional taste.
This is the first time I can recall such a venture taking the look of an actual answer to a patient's (assuming you're a patient) question. And, I don't recall a Jeff (or Jeff Coursen) contributing to this NG.
Please don't let it discourage you. You can usually expect genuine support here.
 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum .
Jeff - 22 Mar 2008 15:45 GMT > Yeah, you have to be wary of those. We don't get hit as hard as some > newsgroups, but we do get an occasional taste. [quoted text clipped - 5 lines] > Please don't let it discourage you. You can usually expect genuine support > here. Excuse me? I am not "such a venture taking the look of an actual answer. . ." I am a pt. of Dr's. Carroll & Shinohara at UCSF on Active Surveillance considering my options, and considering HDR monotherapy/CETMC in particular. Jeff
doofy - 22 Mar 2008 16:23 GMT >>Yeah, you have to be wary of those. We don't get hit as hard as some >>newsgroups, but we do get an occasional taste. [quoted text clipped - 10 lines] > Active Surveillance considering my options, and considering HDR > monotherapy/CETMC in particular. Jeff How long did it take you to get in and see them? I'm trying, but I had to navigate a voicemail menu, listen to instructions from a recorded message, fax in my paperwork, leave a voicemail with info, and then wait, and I've heard nothing, but it's only been about a week.
It would be nice to talk to a live person.
djperry42@sbcglobal.net - 23 Mar 2008 18:05 GMT > How long did it take you to get in and see them? I'm trying, but I had > to navigate a voicemail menu, listen to instructions from a recorded > message, fax in my paperwork, leave a voicemail with info, and then > wait, and I've heard nothing, but it's only been about a week. > > It would be nice to talk to a live person.- Hide quoted text - I see things haven't changed at UCSF in five years. I tried then to see Dr. Carroll, one of the west coast gurus in PCa. Most of the time I'd get a recorded message that said "Our office hours are 8AM to 5PM. If you are calling ---blah, blah." I tried mid-morning and mid- afternoon and got the same thing. When I finally did talk to somebody, I was offered an appointment six weeks into the future. Dr. Brooks at Stanford saw me three days after my initial phone call. Dave Perry
doofy - 22 Mar 2008 16:23 GMT >>Yeah, you have to be wary of those. We don't get hit as hard as some >>newsgroups, but we do get an occasional taste. [quoted text clipped - 10 lines] > Active Surveillance considering my options, and considering HDR > monotherapy/CETMC in particular. Jeff And I'm talking about seeing Carroll/Shinohara.
Jeff - 24 Mar 2008 01:20 GMT I went there upon recommendation of my urol. in Southern CA. Dr. Carroll's scheduling ass't. is Susan Smith, and someone called me back within a day of my initial e-mail. I did have a problem with faxes not being received. They offered an app't. within a week or so of my call. Be a bit persistent as the voice mail jail seems daunting, but once you get in, it is like any other big office and not troublesome to deal with. I did not have any assistance from my doc to make the arrangements. One welcome thing is the insurance billing is accurate. Both docs are pleasant, not aloof, and Dr. C's nurse Nannette Perez is easy to reach with follow-up questions. Their A.S. program is extensive and is pooled with two other univ. hospitals. Let me know if you have other questions.
Jeff
doofy - 24 Mar 2008 05:01 GMT > I went there upon recommendation of my urol. in Southern CA. Dr. > Carroll's scheduling ass't. is Susan Smith, and someone called me back [quoted text clipped - 10 lines] > > Jeff Thanks. I'll yank their chain this week. I suspect Good Friday got in the way too.
Steve Kramer - 23 Mar 2008 01:17 GMT >> Yeah, you have to be wary of those. We don't get hit as hard as some >> newsgroups, but we do get an occasional taste. [quoted text clipped - 12 lines] > Active Surveillance considering my options, and considering HDR > monotherapy/CETMC in particular. Jeff Welcome to the group and I apologize for my early leap. I hadn't seen you here before (don't mean you weren't) and added an observation and came out with the wrong sum. I am sorry.
 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 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum
Jeff - 24 Mar 2008 01:00 GMT Jeff - 21 Mar 2008 16:55 GMT > >>Has anyone gone through HDR monotherapy? > > >>Effectiveness? > > >>Side-effects, short-term, long-term, permanent? In addition to those centers it is also performed at UCSF by Dr. Joe Hsu in Radiation Oncology.
Steve Kramer - 21 Mar 2008 09:36 GMT > Has anyone gone through HDR monotherapy? > > Effectiveness? > > Side-effects, short-term, long-term, permanent? I have not, but several here have. I believe Gourd Dancer, Heather's Ron, and at least one other regular that I can't think of right now.
However, if you get no replies, bring it back up again and I'll send you a list of emails of people who participate here and had HDR.
Alan Meyer - 21 Mar 2008 21:50 GMT > > Has anyone gone through HDR monotherapy? > [quoted text clipped - 9 lines] > send you a list of emails of people who participate here and > had HDR. Two others who've had HDR are myself and Clarence Crow from Australia. However neither of us had it as a monotherapy.
I had it in a clinical trial at the National Cancer Institute. They were testing MRI image guidance of the seed placement. The technique worked pretty well (more about that in a minute) but has been superseded by improved sonographic techniques which are apparently much cheaper and simpler and equally effective.
I had 2 HDR brachytherapy sessions, with 25 intervening sessions of 3DCRT for my Gleason 4+3 cancer. All of the men in the trial were "intermediate" risk (Gleason 7 or PSA 10-20) and for such men, at least at the time when I had the therapy, any kind of brachytherapy (low or high dose) was usually supplemented with external beam to treat the area around the prostate. The reason for that is that, the higher your Gleason or PSA scores, the more likely it is that some cancer is found outside the prostate capsule, beyond the reach of the seeds. Hence the external beam.
I also had two Lupron injections, covering 4+ months of treatment. The rad onc at NCI recommended against it but another rad onc I consulted strongly recommended it and I found some evidence that appeared to show that it improved the effectiveness of treatment for men at intermediate or high risk.
As to the effectiveness ...
14 men entered the trial I was in. When I last spoke to the NCI folks, if I remember correctly, 13 of them (including myself) have still had no recurrence after four years. I believe four of the 14, including me, had big PSA "bounces" after treatment. Mine went up to 1.8. Another fellow had his PSA go up to 2.4 (IIRC). He did not wait to find out if it was a bounce or a recurrence. He went on ADT and left the trial. NCI has not heard from him and doesn't know what his outcome is.
So, so far at least, and certainly in my case, I'm happy with the effectiveness - but I did not have it as monotherapy.
As to side effects ...
These included:
- Blood in the semen during treatment. I don't know if that was due to the HDR or the 3DCRT.
- Significant urinary blockage after the second HDR treatment. When I woke up from the anaesthesia I was unable to urinate. I did not need to be catheterized, but did need to use Flomax for about 5 months, starting at two pills a day and winding down eventually to one every two days before getting off altogether.
- Tenderness in the perineum. This lasted for a week or so. It did not cause me to stop driving or to stop working at my desk job (computer programming), but did prompt me to use a doughnut cushion.
For about 6-8 weeks after the second treatment I was up frequently every night, sometimes 7 times per night, to dribble out small amounts of urine. That tapered off. Eventuall I got back to about where I was before treatment
I had other side effects that I think were due to the 3DCRT.
All of the effects have pretty much worn off.
I think my potency has been affected, but it's hard to tell. It was already in some decline and it doesn't get better as you get older. In any case I can still have sex though I have to work harder at it than when I was young, and Viagra helps.
I don't know where you're located doof, but there are some centers that do a great deal of HDR brachytherapy. IIRC, there is a big center in Georgia that was highly recommended. There are others.
Is HDR better than regular brachytherapy? Who knows? The stats might be slightly better, but both treatments continue to improve. One upside is that the seeds are in and gone. One downside is that it's impossible to give an adequate dose in one session without burning up the patient. It has to be given in two or three procedures (I had two.)
There _may_ be an advantage in that the seeds don't wander. If the surgeon placed them in exactly the right places, thats exactly where they deposit their radiation. I don't know if that's a real advantage that shows up in long term outcomes, and don't know if anyone knows. I speculate that it is an advantage for some patients and not for others - depending on how much and how far their permanent seeds would have wandered. Some rad oncs actually check low dose seed placement some weeks after treatment and add more if they wandered too much. However my sense is that that is uncommon. Many don't even check.
In any case, if you are getting any brachytherapy, or any radiation, or any surgery, or any treatment at all, you want the best and most experienced people to do it. Getting the seeds in the right positions can be a matter of millimeters, or fractions of millimeters. The docs need tremendous knowledge (and first class computer assistance) to know just what the best places are, and great skill to get them there. You need people who care, who have done this many times, who are using top quality equipment, and who have good staff to assist them.
For all of us with cancer, it's the first treatment that gives us the very best shot at a cure. Whether we have surgery, radiation, or whatever, it's often not possible to repeat the treatment. So it has to be done right the first time.
Best of luck.
Alan
JoelTNowak@gmail.com - 21 Mar 2008 23:05 GMT Monotherapy an attractive alternative to ADT2 and ADT3 for men with non-metastatic prostate cancer. ADT1 is currently approved as monotherapy for prostate cancer in 55 countries, however, in the U.S., it is only approved in combination with GnRH-analog therapy.
I have written about montherapy on my blog at www.advancedprostatecancer.net March10, 2008 titled: ADT1 MONOTHERAPY CAUSES MANY LESS SIDE EFFECTS
Hope it answers some of your questions.
Joel
> > "doofy" <n...@notme.com> wrote in message > [quoted text clipped - 126 lines] > > Alan doofy - 21 Mar 2008 23:15 GMT > Monotherapy an attractive alternative to ADT2 and ADT3 for men with > non-metastatic prostate cancer. ADT1 is currently approved as [quoted text clipped - 8 lines] > > Joel ADT1 monotherapy does not sound the same as HDR monotherapy.
JoelTNowak@gmail.com - 21 Mar 2008 23:28 GMT > JoelTNo...@gmail.com wrote: > > Monotherapy an attractive alternative to ADT2 and ADT3 for men with [quoted text clipped - 11 lines] > > ADT1 monotherapy does not sound the same as HDR monotherapy. Sorry, will you please explain what HDR monotherapy is?
Joel
doofy - 21 Mar 2008 23:45 GMT >> JoelTNo...@gmail.com wrote: >>> Monotherapy an attractive alternative to ADT2 and ADT3 for men with [quoted text clipped - 11 lines] > > Joel High Dose Radiation Seed Brachytherapy, but the seeds are only in for a few minutes at a time.
Heather - 22 Mar 2008 00:11 GMT >> Sorry, will you please explain what HDR monotherapy is? >> >> Joel > > High Dose Radiation Seed Brachytherapy, but the seeds are only in for > a few minutes at a time. By the way, D-White and Alan.......Ron had LIQUID radiation which flowed into 18 needles and stayed there for 9 minutes I believe and then was removed. No seeds were used.
The only seeds involved in his procedures were markers for the regular radiation. Mind you, there could have been one as a marker put in at the first HDR procedure.
Just wanted to clarify that. Alan, I don't think I ever realized yours was done via seeds. Ron was in a study (with the requisite numbers the same as yours re PSA and Gleason) using this *new* liquid HDR. I wonder if it made any sort of difference.
Heather
Alan Meyer - 24 Mar 2008 16:48 GMT > ... > By the way, D-White and Alan.......Ron had LIQUID radiation which flowed [quoted text clipped - 11 lines] > > Heather That's interesting. I didn't know there were two (or maybe more) ways to do it.
I didn't actually see what was done since I was anesthetized. The way it was explained to me was a follows:
1. They knocked me out with anesthesia.
2. I was setup with an imaging system. In my case it was endo-rectal MRI, though for most people it's a sonographic system.
3. Based on computer analysis of the images, a map was constructed of where radiation should be delivered.
4. A surgeon inserted plastic catheters through the perineum into the prostate. I think there were 15 or more of these.
5. I was taken into a shielded radiation room, and all the other people left.
6. A robot operating under computer control inserted a single radioactive seed in one of the catheters, held it there for some computer controlled number of seconds, moved it to another position within the same catheter, held it, moved it, etc.
When it was done with one catheter, it inserted the seed in the next one, and so on.
The single seed is supposedly about 30,000 times more radioactive than the permanent seeds that are implanted with permanent brachytherapy. That's why a robot has to do it. It's too "hot" for people to be in the room with the seed after it is removed from its shielded container.
Alan
Alan Meyer - 24 Mar 2008 16:52 GMT On Mar 21, 10:28 pm, JoelTNo...@gmail.com wrote:
> ... > Sorry, will you please explain what HDR monotherapy is? Joel,
I think the term "monotherapy" just means "therapy with only one kind of treatment."
For example, brachytherapy is treatment with radioactive seeds. It is sometimes given in combination with one or two other treatments - external beam radiotherapy (EBRT) and androgen deprivation therapy (ADT). When given without them it's given as a monotherapy.
Similarly, EBRT, surgery, ADT, or other treatments can each be given as a monotherapy or in combination with other therapies.
Alan be given as a monotherapy.
cmdrdata - 21 Mar 2008 23:17 GMT > Has anyone gone through HDR monotherapy? > > Effectiveness? > > Side-effects, short-term, long-term, permanent? In February 2007 I enrolled in a high dose radiation therapy conducted at UT Southwestern Moncrief Radiation Center. That is the only treatment that I took (monotherapy). My PCa was G3+4, T2c, PSA=6.7 6 months prior to treatment. I decided on this SBRT route after studying the results of HDR brachytherapy and believed that it could be just as effective, but less invasive.
This is still an on-going study, and the last month I had my 1 year checkup and all is still well. The current IMRT is typically 200 cGy per treatment x 44 sessions. Mine was 900 cGy x 5 sessions. I think they are now upping the level to 950 cGy for new patients.
A few weeks after treatment my PSA shot up to 14.5 and since then it has been going down every 3 months and last month it was 4.9. My research indicated that slow decline is actually good, and it I am hoping that I will reach my lowest point in another year.
As for side effects: The first month was the hardest. The one I hated the most is the "bowel movement urge". It feels like you have to go every two hours, and yet you'll only pass gas and sometimes a small amount of bloody mucous.Next is peeing and ejaculation. It is somewhat painful due to burning feelings as the fluid travels down the urethra/penis.
All the above SEs subsided after that and all felt normal since then. Lastly, there is one lingering SE that I still have and that is blood in your stool. It is not painful, but a little disconcerting when you get up and see that the toilet bowl is reddish, or you see stripping in the stool. My RT doctor wants me to wait it up and let my body heals naturally, before trying the next step (possibly argon laser coagulation). All in all, I am quite satisfied with the treatment results so far, and I have no problem with erection or sexual function. I can get it up anytime I want to. Oh, there is hardly any semen anymore, but maybe half a tea spoon of clear sticky stuff.
The second worst (not
Heather - 22 Mar 2008 05:31 GMT Hi Cmdr.....I missed this earlier.
I wonder if the sudden soar in PSA isn't part of this. Dr. Loblaw was baffled, but then 2 other men did the same thing. As he is also the Director of Oncology Research, he was writing Ron and the other two up in a paper. But he said Ron's was the most *dramatic*. Shot to 24+ in 2 months. The other fellow went up to 20 but refused the hormone therapy and it magically dropped to where it should have been.
At the moment after 2 years of being off the HT, Ron has crept from undetectible to 0.37. We will wait and see. He has tons more energy. Now if I could just do something about his *inability to hear MY voice*......lol!!
Heather
>> Has anyone gone through HDR monotherapy? >> [quoted text clipped - 42 lines] > > The second worst (not Alan Meyer - 24 Mar 2008 17:02 GMT > Hi Cmdr.....I missed this earlier. > > I wonder if the sudden soar in PSA isn't part of this. That's an interesting question.
Some, but not most, of the men among the 14 in my clinical trial experienced a PSA bounce, though none went above 3.0 I think.
In my own case, I had ADT at the same time as the radiation, so the first couple of PSA tests I had after the procedures were artificially low. It's possible that mine would have shot up some, but the ADT suppressed it.
Alan
Califchief - 22 Mar 2008 05:00 GMT >>> Has anyone gone through HDR monotherapy? >>> >>> Effectiveness? >>> >>> Side-effects, short-term, long-term, permanent?
>> No but I'm interested as well. This outfit seems to have >> the most extensive experience and a lot of info: www......
> That website feels like its advertising hard. I had the same feeling after visiting the cyberknife(?) site. I later learned that the facility that my urologist sent me to owned the cyberknife, which had been installed on the other side of town just one week prior to my appointment.
I also felt I was going to be one of the early guinea pigs. <g>
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Califchief - 23 Mar 2008 06:00 GMT > I had to navigate a voicemail menu, listen to instructions from a > recorded message, fax in my paperwork, leave a voicemail with info, I absolutely refuse to have any business whatsoever with a business (and medicine is BIG business) or anyone who is that rude and unpersonal.
Same as with someone who cares so little about you that they'll put you on hold when they sense call- waiting buzzing them.
It's a message that you're not important to them. They're curious to see in the other caller might be more important.
I never phone them again. THEY are not that important to me!
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