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Old 02-17-2011, 08:19 AM   #1
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Proton beam: quality of life at ~ 4 years - new study

Here's another poster abstract from the ASCO (American Society of Clinical Oncology) conference on Genitourinary Cancer. The abstract states that this is the first long-term study for proton beam prostate cancer patients. I'm glad they have published , but I'm wondering what took them so long. Also, this study is from Mass General, long one of the only two proton beam sites in the US before several sites opened in the past few years. Why hasn't Loma Linda, the leader in this technology, published? Anyway, the results are reassuring, and the median (average) follow-up of 44 months is long-term enough to strongly suggest that we are seeing the real picture and not a premature result. Here's information excerpted from the abstract, in blue:

"Long-term QOL outcome after proton beam monotherapy for localized prostate cancer."
"General Poster Session A: Prostate Cancer
Abstract No: 68
Citation:
J Clin Oncol 29: 2011 (suppl 7; abstr 68)
Author(s):
J. Coen, J. J. Paly, E. A. Weyman, A. Rodrigues, W. U. Shipley, A. L. Zietman, J. A. Efstathiou, J. A. Talcott; Massachusetts General Hospital, Boston, MA; Center for Outcomes Research, Massachusetts General Hospital Cancer Center, Charlestown, MA

Abstract:

Background: High-dose conformal proton radiation for localized prostate cancer results in favorable clinical outcomes and low toxicity rates. Here, we report long-term quality of life (QOL) outcome for men treated with conformal protons. ...Conclusion: High-dose proton radiation was associated with small increases in bowel dysfunction, obstructive/irritative voiding dysfunction and incontinence. With long term follow-up, sexual dysfunction increased more than any other symptom domain."


One observer noted that the decline in sexual function could be due to age, as the average age of the 72 men in the study was 66.

It was not possible to tell from the abstract what the scores for each area meant, though that is probably readily available. The authors did note that increases in each area were only significant for men who were normal in that area at the start, or for both normal and intermediate men in the sexual dysfunction area.

What I would realy like to see are some longer term cancer control results for proton beam, results around the ten year mark. However, I'll salute the authors for adding this useful research to our base of knowledge.

 
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Old 02-27-2011, 05:50 PM   #2
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Re: Proton beam: quality of life at ~ 4 years - new study

Hi Jim-

As you may recall I was an active contributor on this board for two years or so after my successful treatment of my Gleason 7 case at Florida Proton (it has now been over 3 years).

Guess it is time to catch up a little. Thanks for this post on some published proton beam reports.

I have a 70 year old friend with Gleason 6, PSA of about 10. I loaned him my books and gave him my advice, which was to check out all the alternatives. Once he dug into proton beam he wanted to move in that direction.

However he is also dealing with multiple myeloma- and has been able to control that with a past stem cell transplant and off and on drug treatments. He was scheduled to go to Florida Proton for an evaluation but was just told he could not be a candidate because of his multiple myeloma.

Does that make sense to you? He cannot have surgery but did feel that proton beam was for him because of its very targeted radiation and reduced side effects vs other treatments.

Do you think there is a valid reason for excluding him from proton beam treatment? He has also asked me for a fallback idea. What thoughts have you or others on that? Cyberknife? The latest in conventional radiation?

Thanks!

Daff

 
Old 03-19-2011, 07:30 PM   #3
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Re: Proton beam: quality of life at ~ 4 years - new study

Hi daff and welcome back! I hope you are doing well.

I'll tell you what I think is happening and mention an option in green. You wrote in part:


[QUOTE=daff;4694895]...I have a 70 year old friend with Gleason 6, PSA of about 10...

However he is also dealing with multiple myeloma- and has been able to control that with a past stem cell transplant and off and on drug treatments. He was scheduled to go to Florida Proton for an evaluation but was just told he could not be a candidate because of his multiple myeloma.

Does that make sense to you? He cannot have surgery but did feel that proton beam was for him because of its very targeted radiation and reduced side effects vs other treatments.

Do you think there is a valid reason for excluding him from proton beam treatment?

I suspect the proton folks are worried about any form of external beam radiation's possible impact on the blood as it passes through the body, even though proton beam does not release much energy outside the target. However, I'm really not on firm footing here.

Another reason may be a concern that he has a very significant "comorbidity", in other words, another very serious disease to be concerned about, and that at age 70, unless his prostate cancer is quite aggressive, to be blunt, he will probably succumb to something else first. Comorbidity analysis is supposed to play a major role in treatment decision making.


Quote:
He has also asked me for a fallback idea. What thoughts have you or others on that? Cyberknife? The latest in conventional radiation?

Thanks!

Daff
I'm thinking that CyberKnife would have the same issues as proton beam, only more so as it passes through the body. Again, I'm not sure if this would be a concern.

However, while it does not have a flashy public relations buzz, good old brachytherapy, at a center of excellence, is really at the top of the charts for effectiveness in curing local, low-risk prostate cancer, and is also remarkably effective against intermediate risk cancer, as long as it is local. Frankly, there is quite a separation in formally published success rates and length of follow-up between brachy and proton, with brachy clearly superior in both. However, proton does seem to be as good or better than any regarding side effects, though well done brachy has a pretty decent side effect profile also.

Is there a reason that active surveillance is not feasible for your friend?

Do you know why the proton folks haven't reported long-term success rates, especially from Loma Linda? I cannot find out the reason. I've even contacted Loma Linda. Our new participant harpman suggested that it might be because they have used increasing doses as years passed, and that might give them trouble in analyzing impact due to the various dose levels. Frankly, I'm a bit worried that they are holding back because, while their side effects results are looking good, their more recent cure and control statistics may not look competitive.

I hope you will be able to post again now and then.

Take care,

Jim

 
Old 03-20-2011, 04:47 AM   #4
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Re: Proton beam: quality of life at ~ 4 years - new study

Quote:
Originally Posted by daff View Post
Hi Jim-

As you may recall I was an active contributor on this board for two years or so after my successful treatment of my Gleason 7 case at Florida Proton (it has now been over 3 years).

Guess it is time to catch up a little. Thanks for this post on some published proton beam reports.

I have a 70 year old friend with Gleason 6, PSA of about 10. I loaned him my books and gave him my advice, which was to check out all the alternatives. Once he dug into proton beam he wanted to move in that direction.

However he is also dealing with multiple myeloma- and has been able to control that with a past stem cell transplant and off and on drug treatments. He was scheduled to go to Florida Proton for an evaluation but was just told he could not be a candidate because of his multiple myeloma.

Does that make sense to you? He cannot have surgery but did feel that proton beam was for him because of its very targeted radiation and reduced side effects vs other treatments.

Do you think there is a valid reason for excluding him from proton beam treatment? He has also asked me for a fallback idea. What thoughts have you or others on that? Cyberknife? The latest in conventional radiation?

Thanks!

Daff
Daff

I believe the age of your friend and his diagnosis (Gs 6, PSA±10) are the cause for the refusal at Florida Proton. High PSA with low Gleason score is also an indication of micro metastasis, which may be present.
Although you do not indicate the Gleason pattern, I think that it is 3 (3+3=6). This pattern could as well be 2 if based on the “scale” before 2005, and based on such scale 2+2= Gs 4 which still gives more preferences to a low risk patient (AS approach). This in terms of his age and other related health problem could bracket his status for WW.
Micro metastases are not good targets for radiation because RT (proton) is a "directional-type" of treatment. In that sense, RT would help in extending his prognosis to which hormonal therapy may provide a better success.

I would appreciate to read about your present status regarding your 3 years anniversary from proton therapy. Could you share some info?

Wishing you the best.
Baptista

 
Old 03-20-2011, 09:21 AM   #5
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Re: Proton beam: quality of life at ~ 4 years - new study

Just curious....How would proton beam therapy compare to regular external beam therapy as far as the history of colitis goes. As some of you may remember, the doctors at PMH strongly recommended against radiation for Irv because of the low benefit/high risk ratio. They believe, with his numbers, chances are that the cancer has already gone systemic. With that belief, coupled with the risk of radiation further aggravating the colon, they convinced us to just go with the hormone therapy.

With those advocates of triple blockade here, we believed in it enough to push Irv's doctor into agreeing to prescribe the Avodart. Irv is also taking several supplements and working out daily. He's enjoying the physical difference he's been feeling and, after 3 weeks after the Zoladex injection, he still suffers from no side effects....yet. I keep reminding him that it's good to be positive, but also realistic. The hot flashes could still come and we haven't gotten a new PSA reading since before he started on the hormone therapy. We're hopeful and feeling positive. However, I'm still looking for some opinions on radiation. Should we just leave it and continue with the hormone therapy for as long as we can, or is it worth exploring the idea of radiation at this point? I just want honest opinions based on the experience of others.

Irv and I will be leaving for our trip in one week and I think we planned this well....no more tears...no more anxiety for the moment....just the ability to live life one day at a time and not think too much about the monster inside of Irv. We're battling it out as best we can at the moment.

Just thought I'd touch base as I've been reading about this proton therapy and I've been wondering about it...

Rhonda

 
Old 03-20-2011, 10:43 AM   #6
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Re: Proton beam: quality of life at ~ 4 years - new study

[QUOTE=IADT3since2000;4710624]Hi daff and welcome back! I hope you are doing well.

I'll tell you what I think is happening and mention an option in green. You wrote in part:


Quote:
Originally Posted by daff View Post
...I have a 70 year old friend with Gleason 6, PSA of about 10...

However he is also dealing with multiple myeloma- and has been able to control that with a past stem cell transplant and off and on drug treatments. He was scheduled to go to Florida Proton for an evaluation but was just told he could not be a candidate because of his multiple myeloma.

Does that make sense to you? He cannot have surgery but did feel that proton beam was for him because of its very targeted radiation and reduced side effects vs other treatments.

Do you think there is a valid reason for excluding him from proton beam treatment?

I suspect the proton folks are worried about any form of external beam radiation's possible impact on the blood as it passes through the body, even though proton beam does not release much energy outside the target. However, I'm really not on firm footing here.

Another reason may be a concern that he has a very significant "comorbidity", in other words, another very serious disease to be concerned about, and that at age 70, unless his prostate cancer is quite aggressive, to be blunt, he will probably succumb to something else first. Comorbidity analysis is supposed to play a major role in treatment decision making.




I'm thinking that CyberKnife would have the same issues as proton beam, only more so as it passes through the body. Again, I'm not sure if this would be a concern.

However, while it does not have a flashy public relations buzz, good old brachytherapy, at a center of excellence, is really at the top of the charts for effectiveness in curing local, low-risk prostate cancer, and is also remarkably effective against intermediate risk cancer, as long as it is local. Frankly, there is quite a separation in formally published success rates and length of follow-up between brachy and proton, with brachy clearly superior in both. However, proton does seem to be as good or better than any regarding side effects, though well done brachy has a pretty decent side effect profile also.

Is there a reason that active surveillance is not feasible for your friend?

Do you know why the proton folks haven't reported long-term success rates, especially from Loma Linda? I cannot find out the reason. I've even contacted Loma Linda. Our new participant harpman suggested that it might be because they have used increasing doses as years passed, and that might give them trouble in analyzing impact due to the various dose levels. Frankly, I'm a bit worried that they are holding back because, while their side effects results are looking good, their more recent cure and control statistics may not look competitive.

I hope you will be able to post again now and then.

Take care,

Jim
Jim-

Thanks for the information. I've sort of come to a similar conclusion- the inclusion of a patient already dealing with a serious cancer can confound the later research of proton results. I believe my friend is managing his multiple myeloma well, but things of course can always change. So Florida Proton just doesn't want to deal with this.

I think he has seen a brachy doc, but don't know what the conclusion was; and I don't know if he's being offered the active surveillance route. I think he just wants to treat it, as long as the treatment will be "user friendly" and won't throw him a bunch of side effects.

As to why there is not more results of those treated with proton, I can't really answer that. Seems like there should certainly be enough data now to publish more than they have. They do seem to keep making protocol changes, so maybe they don't want to report on results from methods no longer in use. But the basics are still the same, so I'm surprised we haven't read more factual data/reports.

 
Old 03-20-2011, 10:52 AM   #7
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Re: Proton beam: quality of life at ~ 4 years - new study

Hi Baptista-

Thanks for the info you added to Jim's comments on my friend with multiple myeloma seeking prostate cancer treatment alternatives, including proton beam therapy. (His Gleason is 3+3= 6.)

Your question as to my status-- I'm doing quite well as I approach 3 1/2 yrs in May. My nadir seems to have been reached at a PSA of 0.3 (I always dread the periodic PSA tests though). I started with a PSA of around 4.0, pre-treatment, and while it dropped after the treatments, it did bounce around somewhat until about a year ago. Other than some on and off-again rectal bleeding, not really serious, I conclude I've not experienced any other side effects. Have been very pleased that I took three months to do some extensive due diligence prior to dropping thoughts of surgery in place of proton treatment- all that back in mid-2007.

 
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Old 03-20-2011, 10:56 AM   #8
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Re: Proton beam: quality of life at ~ 4 years - new study

Quote:
Originally Posted by honda50 View Post
Just curious....How would proton beam therapy compare to regular external beam therapy as far as the history of colitis goes. As some of you may remember, the doctors at PMH strongly recommended against radiation for Irv because of the low benefit/high risk ratio. They believe, with his numbers, chances are that the cancer has already gone systemic. With that belief, coupled with the risk of radiation further aggravating the colon, they convinced us to just go with the hormone therapy.

With those advocates of triple blockade here, we believed in it enough to push Irv's doctor into agreeing to prescribe the Avodart. Irv is also taking several supplements and working out daily. He's enjoying the physical difference he's been feeling and, after 3 weeks after the Zoladex injection, he still suffers from no side effects....yet. I keep reminding him that it's good to be positive, but also realistic. The hot flashes could still come and we haven't gotten a new PSA reading since before he started on the hormone therapy. We're hopeful and feeling positive. However, I'm still looking for some opinions on radiation. Should we just leave it and continue with the hormone therapy for as long as we can, or is it worth exploring the idea of radiation at this point? I just want honest opinions based on the experience of others.

Irv and I will be leaving for our trip in one week and I think we planned this well....no more tears...no more anxiety for the moment....just the ability to live life one day at a time and not think too much about the monster inside of Irv. We're battling it out as best we can at the moment.

Just thought I'd touch base as I've been reading about this proton therapy and I've been wondering about it...

Rhonda
Hi Rhonda-

I really have no experience or knowledge to be able to effectively respond to the questions you have on proton, other than to say it's among the best form of radiation in terms of precise targeting/minimal collateral radiation. I would pose your questions to one of the major proton treatment centers (My experience was at University of Florida Proton Therapy Institute in Jacksonville, but you can check out other centers that may be closer to you.)

 
Old 03-20-2011, 12:36 PM   #9
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Re: Proton beam: quality of life at ~ 4 years - new study

Hi daff,

I'm glad to see from your post #7 that you are doing very well. I hope you continue on that course. It's looking like you've got this thing licked.

I had another thought related to:


Quote:
Originally Posted by daff View Post
Hi Baptista-

Thanks for the info you added to Jim's comments on my friend with multiple myeloma seeking prostate cancer treatment alternatives, including proton beam therapy. (His Gleason is 3+3= 6.) ...
Even more than an impact on blood, the docs may be concerned about the bone marrow, the target of multiple myeloma, and the routing of proton beam radiation through the hip bone. Once again I'm speculating here without a firm basis.

Take care,

Jim

 
Old 03-20-2011, 10:12 PM   #10
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Re: Proton beam: quality of life at ~ 4 years - new study

Rhonda
The only way to find out about how proton beam therapy compares to regular external beam therapy with a history of colitis is to talk to a doctor working in the field of Proton Beam Therapy. I do know that Loma Linda does salvage with proton and I did meet a fellow patient with colitis during my treatments.
Bob

 
Old 03-20-2011, 10:19 PM   #11
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Re: Proton beam: quality of life at ~ 4 years - new study

IADT3since2000
Jim, the fellow with multiple myeloma may have been rejected as a patient because having one cancer of the bone makes it indistinguishable from a metastasis of prostate cancer to the bone. The insurance company might not go for it in this case but it might be different if he paid cash out of his own pocket. But this is just conjecture.
Bob

 
Old 03-21-2011, 12:46 PM   #12
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Re: Proton beam: quality of life at ~ 4 years - new study

MORE ON SIDE EFFECTS FROM PROTON BEAM FOR PROSTATE CANCER

I'm picking up with the key poster text that I quoted in post #1 as I have found related comments from a leading expert on radiation at Mass General Hospital who also practices proton therapy, including for prostate cancer, Dr. Zeitman. Here's the quotation first:

Quote:
Originally Posted by IADT3since2000 View Post
...
"Long-term QOL outcome after proton beam monotherapy for localized prostate cancer."
"General Poster Session A: Prostate Cancer
Abstract No: 68
Citation:
J Clin Oncol 29: 2011 (suppl 7; abstr 68)
Author(s):
J. Coen, J. J. Paly, E. A. Weyman, A. Rodrigues, W. U. Shipley, A. L. Zietman, J. A. Efstathiou, J. A. Talcott; Massachusetts General Hospital, Boston, MA; Center for Outcomes Research, Massachusetts General Hospital Cancer Center, Charlestown, MA

...Conclusion: High-dose proton radiation was associated with small increases in bowel dysfunction, obstructive/irritative voiding dysfunction and incontinence. With long term follow-up, sexual dysfunction increased more than any other symptom domain."
Dr. Anthony L. Zietman, MBBS, MD, a co-author of the quoted poster, is an expert in radiation and proton therapy. His credentials are impressive; he is the president of the American Society for Radiation Oncology (ASTRO), which is the medical association for radiation oncologists; I just searched his name in www.pubmed.gov and came up with 130 hits, including 84 for prostate cancer, 14 of which involve proton therapy.

Here is what he had to say about radiation side effects in comments quoted in Oncology Times last April, responding to the common misconception that there are no side effects from proton therapy: "They [meaning patients] get this from marketing, and my first job is to disabuse them of all their misconceptions, and let them know that the side effects are not bad, but neither are they zero."

Unfortunately, the poster used scales to score side effects instead of percentages for patients affected, so it's impossible to know from the abstract how many patients were affected. Does anyone know?

I'm thinking the misconception has staying power because so many patients have no side effects or very mild effects. We've had some come to our education and support group, and some participate on this board. That's a good thing. However, as Dr. Zietman advises, some patients do have side effects after proton therapy, and it would be better if they were aware of that potential prior to chosing a therapy..

Jim

 
Old 03-21-2011, 03:01 PM   #13
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Re: Proton beam: quality of life at ~ 4 years - new study

Jim
You are absolutely correct that all prostate cancer treatments cause side effects. I had a failed RP with minor side effects and then Proton salvage but there will always be the unfortunate person who will suffer severe side effects from any cancer treatment. I found one website for a Florida outfit running what I consider to be a "Scare Page" concerning Loma Linda and a 2004 study of 1255 men treated for localized prostate cancer with proton beam therapy at Loma Linda between Oct 91 and Dec 97. Pay attention to the last sentence:
"CONCLUSIONS: Conformal proton radiation therapy at the 'reported dose levels' yielded disease-free survival rates comparable with other forms of local therapy, and with minimal morbidity. Dose-escalation strategies are being implemented to further improve long-term results."

Loma Linda has now treated over 15,000 patients with proton beam therapy. It's not 1991 or 1997 anymore and there will soon be close to thirty proton centers operating in the US instead of only one from 1990 to 2002. These proton centers cost approx. $200 million each and hospitals are voting with their capital.
Bob

 
Old 03-21-2011, 07:07 PM   #14
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Re: Proton beam: quality of life at ~ 4 years - new study

Hi Bob,

I'll put some thoughts relating to your previous post in green.


[QUOTE=harpman;4712021]... I found ...a 2004 study of 1255 men treated for localized prostate cancer with proton beam therapy at Loma Linda between Oct 91 and Dec 97. Pay attention to the last sentence:
"CONCLUSIONS: Conformal proton radiation therapy at the 'reported dose levels' yielded disease-free survival rates comparable with other forms of local therapy, and with minimal morbidity. Dose-escalation strategies are being implemented to further improve long-term results."[QUOTE]

I recognize that study. It's one of the early reports of the Loma Linda experience, before they stopped publishing their results. Some of the results looked decent, such as the 90% success at some point in time - not stated in the abstract, for patients with initial PSA less than or equal to 4. However, the overall success for low-risk patients seems to be around 80% - as good or better than many IMRT studies, but clearly lower than most brachytherapy or brachytherapy/IMRT studies at centers of excellence. I guess they can claim comparability to other therapies based on the comparisons to IMRT alone for low-risk patients, but, if I were a new patient, I would be mighty tempted by those high flying and long lasting brachytherapy success reports.

I've been trying to figure out the urge to invest in proton centers. I did see comments from the leader of one university's proton investment program, and, while he knew the advantages of proton beam for prostate cancer, he was not aware of some significant negative facts about proton beam. Among other things, he thought it was a side-effect free proposition for all patients. It's discouraging to learn that a leader in charge of a huge investment has that kind of misconception! I'm left wondering how many other institutional investers also suffered from that misconception. It's too bad, too, because proton does have an attractive side effect profile, but it is not perfect.

If you have any influence or contacts with Loma Linda, please urge them to publish updated results.

Take care,

Jim

 
Old 03-21-2011, 07:30 PM   #15
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Re: Proton beam: quality of life at ~ 4 years - new study

Jim
In some cases half proton and half photon are used if there is lymph node involvement I believe.
Bob

 
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