Re: Check in, protons, appreciations

[Guest guest]

Hi Audrey,

thank you for the message. That was honest and warm. I too appreciate

Fuller. He has taken some punches. I remain on the groups because we

never know if we are going to need more support and guidance, and

there are always new things to learn. I also stick around so that I

can share Gregg's and my experince with protons and to support

Fuller. He is far more knowledgable than I in the science, but I am

as big a supporter of the options as he is.

Can I ask what size 's prostate making it necessary to shrink

before seeding? The question comes up when I am talking to newly

diagnosed people who are in the decision making process.

Thank you! again

Laurel

>

> Hi All,

> I am approaching my first anniversary on this list (mainly as a

> grateful lurker) and appreciate of all your postings. (History: My

> beloved was treated with photons at Dattoli last year, the

> whole enchilada of five weeks external beam, 100 palladium seeds

> implanted 10 weeks later, and three months later an additional 8

> treatments of IMRT, all ending in December of 2007. His initial

> numbers were Gleason 6 upgraded to 7, 3 cores of 12 positive, PSA

9.

> He is 62 years young, 63 in April).

>

> Most of Bob's lingering side effects came from the course of

hormones

> (3 months of Trelstar, and six of Casodex and Avodart) he took to

> shrink his prostate prior to seeding. With radiation one never

knows

> if future malignancies might be triggered, and one doesn't really

even

> learn, for a couple of years, if the cancer was successfully

halted.

> But we are meditators and live in the moment as much as possible and

> this moment is a great one! (Although we're getting a little sick

of

> snow here in Vermont.)

>

> For today Bob is doing great, sexual function slowly but definitely

> returning without any chemical assistance, only real remaining side

> effects very minimal (weight gain, slight breast swelling, all from

> hormones). We feel very lucky.

>

> All that said, do I wish we'd gone with protons? Yes, I think so.

> Dattoli made sense on so many levels (and we'd already made our

plans

> when we first heard of protons) and they are certainly state of the

> photon art. Bob had a condo in Bradenton which is near Dattoli; the

> cost of a lengthy trip to California would have been extremely heavy

> on our modest budget . . . we were also so relieved to have fixed

upon

> a plan after researching options for so long that we didn't have the

> heart to rethink it anymore! But in my mind, if protons mean less

> collateral damage in addition to QOL issues, it is just a HUGE HUGE

> consideration.

>

> If proton treatment proves successful over time, I fully believe it

> will become the treatment of choice and will eventually be covered

by

> all insurance (including Kaiser, VA and other holdouts) if only to

> keep competitive. Centers will be built and become more affordable,

> it's the American way! I may be naive, but when the six or so

> percent of insurance decision-makers and/or their partners face this

> decision on a personal level, they may well be more open to finding

a

> better way.

>

> What initially inspired me to write today though is to send my great

> appreciation to Fuller for his persistence in staying connected with

> this group. I was very touched, Fuller, by your thoughtful, humble

> email to Dan describing your personal process of taking in 's

> comments and modifying your approach over the past year in dealing

> with protons on this listserv. The way I experience your posts now

is

> very different; they are not combative at all, but are those of a

> strong wise advocate for a therapy he has personally experienced. I

> am very grateful that new members to this " club that we never wanted

> to join " will get the benefit of your experience. I am grateful all

> of us are willing to learn and grow and as says, be kind to

each

> other. After all we're all in this together.

>

> I know I write at length but at least it's infrequent.

>

> Warm regards to all of you,

> Audrey

>

[Guest guest]

Given your description, I'm trying to understand why you wish you had

gone with protons.. Your husband seems to have few side effects, and

the ones he has you attribute to his hormone treatment. Wouldn't he

have had hormone treatment if he had undergone proton therapy too?

> Hi All,

> I am approaching my first anniversary on this list (mainly as a

> grateful lurker) and appreciate of all your postings. (History: My

> beloved was treated with photons at Dattoli last year, the

> whole enchilada of five weeks external beam, 100 palladium seeds

> implanted 10 weeks later, and three months later an additional 8

> treatments of IMRT, all ending in December of 2007. His initial

> numbers were Gleason 6 upgraded to 7, 3 cores of 12 positive, PSA 9.

> He is 62 years young, 63 in April).

>

> Most of Bob's lingering side effects came from the course of hormones

> (3 months of Trelstar, and six of Casodex and Avodart) he took to

> shrink his prostate prior to seeding. With radiation one never knows

> if future malignancies might be triggered, and one doesn't really even

> learn, for a couple of years, if the cancer was successfully halted.

> But we are meditators and live in the moment as much as possible and

> this moment is a great one! (Although we're getting a little sick of

> snow here in Vermont.)

>

> For today Bob is doing great, sexual function slowly but definitely

> returning without any chemical assistance, only real remaining side

> effects very minimal (weight gain, slight breast swelling, all from

> hormones). We feel very lucky.

>

> All that said, do I wish we'd gone with protons? Yes, I think so.

> Dattoli made sense on so many levels (and we'd already made our plans

> when we first heard of protons) and they are certainly state of the

> photon art. Bob had a condo in Bradenton which is near Dattoli; the

> cost of a lengthy trip to California would have been extremely heavy

> on our modest budget . . . we were also so relieved to have fixed upon

> a plan after researching options for so long that we didn't have the

> heart to rethink it anymore! But in my mind, if protons mean less

> collateral damage in addition to QOL issues, it is just a HUGE HUGE

> consideration.

>

> If proton treatment proves successful over time, I fully believe it

> will become the treatment of choice and will eventually be covered by

> all insurance (including Kaiser, VA and other holdouts) if only to

> keep competitive. Centers will be built and become more affordable,

> it's the American way! I may be naive, but when the six or so

> percent of insurance decision-makers and/or their partners face this

> decision on a personal level, they may well be more open to finding a

> better way.

>

> What initially inspired me to write today though is to send my great

> appreciation to Fuller for his persistence in staying connected with

> this group. I was very touched, Fuller, by your thoughtful, humble

> email to Dan describing your personal process of taking in 's

> comments and modifying your approach over the past year in dealing

> with protons on this listserv. The way I experience your posts now is

> very different; they are not combative at all, but are those of a

> strong wise advocate for a therapy he has personally experienced. I

> am very grateful that new members to this " club that we never wanted

> to join " will get the benefit of your experience. I am grateful all

> of us are willing to learn and grow and as says, be kind to each

> other. After all we're all in this together.

>

> I know I write at length but at least it's infrequent.

>

> Warm regards to all of you,

> Audrey

Bobinnv

[Guest guest]

Hi Bob,

It is my understanding that with radiation treatment, many side

effects appear over time (that's also true of the gradual death of

cancer cells which is why we won't know for a while, based on PSA, how

well the treatment worked). Thus if we'd gone with proton treatment,

we could reasonably anticipate fewer problems down the road, since I

believe that protons deliver less exposure to the organs surrounding

the prostate than photons do.

However, as I said earlier, we are very grateful for where we are, and

are committed to staying in the moment as best we can. (as Gertrude

Stein said, " I wish that I were where I am. " ) So I guess my comments

are really directed at those who have not yet decided.

Warmly,

Audrey

>

> > Hi All,

> > I am approaching my first anniversary on this list (mainly as a

> > grateful lurker) and appreciate of all your postings. (History: My

> > beloved was treated with photons at Dattoli last year, the

> > whole enchilada of five weeks external beam, 100 palladium seeds

> > implanted 10 weeks later, and three months later an additional 8

> > treatments of IMRT, all ending in December of 2007. His initial

> > numbers were Gleason 6 upgraded to 7, 3 cores of 12 positive, PSA 9.

> > He is 62 years young, 63 in April).

> >

> > Most of Bob's lingering side effects came from the course of hormones

> > (3 months of Trelstar, and six of Casodex and Avodart) he took to

> > shrink his prostate prior to seeding. With radiation one never knows

> > if future malignancies might be triggered, and one doesn't really even

> > learn, for a couple of years, if the cancer was successfully halted.

> > But we are meditators and live in the moment as much as possible and

> > this moment is a great one! (Although we're getting a little sick of

> > snow here in Vermont.)

> >

> > For today Bob is doing great, sexual function slowly but definitely

> > returning without any chemical assistance, only real remaining side

> > effects very minimal (weight gain, slight breast swelling, all from

> > hormones). We feel very lucky.

> >

> > All that said, do I wish we'd gone with protons? Yes, I think so.

> > Dattoli made sense on so many levels (and we'd already made our plans

> > when we first heard of protons) and they are certainly state of the

> > photon art. Bob had a condo in Bradenton which is near Dattoli; the

> > cost of a lengthy trip to California would have been extremely heavy

> > on our modest budget . . . we were also so relieved to have fixed upon

> > a plan after researching options for so long that we didn't have the

> > heart to rethink it anymore! But in my mind, if protons mean less

> > collateral damage in addition to QOL issues, it is just a HUGE HUGE

> > consideration.

> >

> > If proton treatment proves successful over time, I fully believe it

> > will become the treatment of choice and will eventually be covered by

> > all insurance (including Kaiser, VA and other holdouts) if only to

> > keep competitive. Centers will be built and become more affordable,

> > it's the American way! I may be naive, but when the six or so

> > percent of insurance decision-makers and/or their partners face this

> > decision on a personal level, they may well be more open to finding a

> > better way.

> >

> > What initially inspired me to write today though is to send my great

> > appreciation to Fuller for his persistence in staying connected with

> > this group. I was very touched, Fuller, by your thoughtful, humble

> > email to Dan describing your personal process of taking in 's

> > comments and modifying your approach over the past year in dealing

> > with protons on this listserv. The way I experience your posts now is

> > very different; they are not combative at all, but are those of a

> > strong wise advocate for a therapy he has personally experienced. I

> > am very grateful that new members to this " club that we never wanted

> > to join " will get the benefit of your experience. I am grateful all

> > of us are willing to learn and grow and as says, be kind to each

> > other. After all we're all in this together.

> >

> > I know I write at length but at least it's infrequent.

> >

> > Warm regards to all of you,

> > Audrey

>

> Bobinnv

>

[Guest guest]

Hi Laurel,

Bob's prostate initially weighed a zaftig 78(is it mg or ml?), and

after three months on the the Trelstar (similar to Lupron), it shrunk

down to a svelte 34ml/mg.

And what I said about Fuller goes for you too, you are another

esteemed proton warrior.

Warmly,

Audrey

> >

> > Hi All,

> > I am approaching my first anniversary on this list (mainly as a

> > grateful lurker) and appreciate of all your postings. (History: My

> > beloved was treated with photons at Dattoli last year, the

> > whole enchilada of five weeks external beam, 100 palladium seeds

> > implanted 10 weeks later, and three months later an additional 8

> > treatments of IMRT, all ending in December of 2007. His initial

> > numbers were Gleason 6 upgraded to 7, 3 cores of 12 positive, PSA

> 9.

> > He is 62 years young, 63 in April).

> >

> > Most of Bob's lingering side effects came from the course of

> hormones

> > (3 months of Trelstar, and six of Casodex and Avodart) he took to

> > shrink his prostate prior to seeding. With radiation one never

> knows

> > if future malignancies might be triggered, and one doesn't really

> even

> > learn, for a couple of years, if the cancer was successfully

> halted.

> > But we are meditators and live in the moment as much as possible and

> > this moment is a great one! (Although we're getting a little sick

> of

> > snow here in Vermont.)

> >

> > For today Bob is doing great, sexual function slowly but definitely

> > returning without any chemical assistance, only real remaining side

> > effects very minimal (weight gain, slight breast swelling, all from

> > hormones). We feel very lucky.

> >

> > All that said, do I wish we'd gone with protons? Yes, I think so.

> > Dattoli made sense on so many levels (and we'd already made our

> plans

> > when we first heard of protons) and they are certainly state of the

> > photon art. Bob had a condo in Bradenton which is near Dattoli; the

> > cost of a lengthy trip to California would have been extremely heavy

> > on our modest budget . . . we were also so relieved to have fixed

> upon

> > a plan after researching options for so long that we didn't have the

> > heart to rethink it anymore! But in my mind, if protons mean less

> > collateral damage in addition to QOL issues, it is just a HUGE HUGE

> > consideration.

> >

> > If proton treatment proves successful over time, I fully believe it

> > will become the treatment of choice and will eventually be covered

> by

> > all insurance (including Kaiser, VA and other holdouts) if only to

> > keep competitive. Centers will be built and become more affordable,

> > it's the American way! I may be naive, but when the six or so

> > percent of insurance decision-makers and/or their partners face this

> > decision on a personal level, they may well be more open to finding

> a

> > better way.

> >

> > What initially inspired me to write today though is to send my great

> > appreciation to Fuller for his persistence in staying connected with

> > this group. I was very touched, Fuller, by your thoughtful, humble

> > email to Dan describing your personal process of taking in 's

> > comments and modifying your approach over the past year in dealing

> > with protons on this listserv. The way I experience your posts now

> is

> > very different; they are not combative at all, but are those of a

> > strong wise advocate for a therapy he has personally experienced. I

> > am very grateful that new members to this " club that we never wanted

> > to join " will get the benefit of your experience. I am grateful all

> > of us are willing to learn and grow and as says, be kind to

> each

> > other. After all we're all in this together.

> >

> > I know I write at length but at least it's infrequent.

> >

> > Warm regards to all of you,

> > Audrey

> >

>

[Guest guest]

Audrey,

As one of the newer members of this group, I want to thank you for your post. My husband and I have benefitted greatly from the information and support here. We wanted to make an informed decision, so we've tried to read everyone's posts to learn as much as possible about all the treatment options.

It is very helpful to hear from those who were happy with their treatment, as well as those who were not and might have chosen something else. It is also helpful to hear answers to other members' questions because we likely have similar questions.

What is not helpful is to hear incessant criticism of a treatment that someone has not experienced themselves and vague anecdotal reports of terrible side effects attributed to a certain treatment. Please give us personal experiences with specifics or scientific research studies.

Thank you for sharing your experiences.

Sharon

Helping your favorite cause is as easy as instant messaging. You IM, we give. Learn more.

[Guest guest]

> It is my understanding that with radiation treatment, many side

> effects appear over time....

(snip)

Not pouncing on Audrey. I see a lot of speculation about, for example,

cancers developing long after RT to the prostate. So I decided to see if

I could find a scientific basis for that, considering current RT techniques.

The latest information I could find is this, based upon a study in

Germany of data through January 2007:

Müller AC et al., " Risk of second malignancies after prostate

irradiation? " Strahlenther Onkol. 2007 Nov;183(11):605-9. (The original

is in German)

" Conclusion: Only very large prospective studies which are designed to

minimize the influence of possible confounders will be able to address

the real risk of prostate irradiation-related cancer induction. The

available data are clearly not valid and helpful for guiding any

treatment decision. "

PubMed ID 17960335. PubMed is a publication of the US National Library

of Medicine, National Institutes of Health.

See www.pubmed.gov and search on the ID number.

I'm unsure what the source of the stories about late tumors might be.

Possibly something from the early days, when RT involved a portal that

included the entire pelvis. I know a man who declined RT 15 years ago

for that very reason.

So far as rectal toxicity is concerned, the data support the finding

that incidence among IMRT patients is on the order of 0.5% and the grade

of toxicity is as variable as the patients.

See, Chaiken et al., " Targeting For Cure: Intensity Modulated Radiation

Therapy " http://www.prostate-cancer.org/education/localdis/Chaiken_IMRT.html

Please note: I am not advocating any particular treatment for any

particular patient. That is not for anyone who is not the patient's

physician to do. I only seek to assure that the facts are available.

Regards,

Steve J

" What are the facts? Again and again and again -- what are the facts?

Shun wishful thinking, ignore divine revelation, forget 'what the stars

foretell,' avoid opinion, care not what the neighbors think, never mind

the unguessable 'verdict of history' -- what are the facts, and to how

many decimal places? You pilot always into an unknown future; facts are

your single clue. Get the facts! "

--Lazarus Long

[Guest guest]

(snip)

> What is not helpful is to hear incessant criticism of a treatment

> that someone has not experienced themselves and vague anecdotal reports

> of terrible side effects attributed to a certain treatment. Please

> give us personal experiences with specifics or scientific research studies.

I just posted some science on RT SEs. Hope it's helpful.

Also: Sharon is wise not to rely upon anecdotes when she and her husband

select treatment. What helps A might harm B and vice versa.

Objective, encyclopedic and reliable information is available on the

website of the Prostate Cancer Research Institute (PCRI) at:

http://prostate-cancer.org/index.html Start with the section " Newly

Diagnosed. "

There is an excellent text on PCa, _A Primer on Prostate Cancer_ 2nd

ed., subtitled " The Empowered Patient's Guide " by medical oncologist and

PCa specialist B. Strum, MD and PCa warrior Donna Pogliano. It

is available from the PCRI website and the like, as well as Amazon (30+

five-star reviews), & Noble, and bookstores. A lifesaver, as I

very well know.

The burden that has been imposed upon us all requires mutual help and

individual learning.

Regards,

Steve J

" Empowerment: taking responsibility for and authority over one's own

outcomes based on education and knowledge of the consequences and

contingencies involved in one's own decisions. This focus provides the

uplifting energy that can sustain in the face of crisis. "

--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled

" The Empowered Patient's Guide. "

[Guest guest]

> Objective, encyclopedic and reliable information is available on the

> website of the Prostate Cancer Research Institute (PCRI) at:

> http://prostate-cancer.org/index.html Start with the section " Newly

> Diagnosed. "

>

Hmmmm....Looking through the PCRI site, I find mention of HIFU,

something not approved in the US, (I believe) but no mention of

protons, which are.

But otherwise, a very good resource.

My best,

Dan