I received this nasty note from Anne Kasper

[Guest guest]

Thank you for your support.

Hugs

nne

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Re: I received this nasty note from Anne Kasper

ne,

This is another member who believes you did the right thing. I had bad

feelings about Ann from the beginning and had even asked a friend (and

moderator) from another group (without giving names or group name)

what she thought I should do. I wished I had spoken up sooner though

but wasn't sure if I was the only one feeling this way. Next time I

will speak sooner.

Val

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[Guest guest]

nne,

Sorry I have not been in on a couple days.... ice knocked out our cable and

internet access and then just had a colonoscopy today. Yesterday was difficult,

today just getting a good day off.

The problem I see with someone like Anne is for the newbies who are immediately

thrown into a system of so many questions and not knowing where to turn. I never

really paid much attention to Anne's postings as I have already been through

treatment, but I think when you first get the dx, you are scared and ready to

listen to anything that would be better than surgery, radiation and chemo. Those

are the woman I would worry about hearing what Anne had to say and jumping at

what she says as the best way to cure the disease.

There are certainly plenty of women here who have done the research both for

traditional treatment and non-traditional (shall I say) and might still be

interest in what Anne says. Let them talk to her privately. They, at least, have

a better understanding of what they want and don't want.

Unfortunately, right now, I don't believe we have an 'easy' cure for cancer. It

takes work and a treatment that isn't much fun. Some day, I hope they find that

cure and we can get a magic pill or magic plant or herb or lifestyle that we can

all follow. I don't think the medical field will look away when that

happens....far too many illnesses and too few doctors for that to happen. They

will survive.

Until then, I think you did the right thing. But then, that is only my

opinion.....

Barb

Michigan

Re: I received this nasty note from Anne Kasper

nne - I believe that you did the right thing. This woman

definately had an agenda here, to sell something - which is okay

with me but she quotes statistics that are blatently false and makes

statements like " radiation CAUSES cancer " - that's inflamatory and

could and would scare the heck out of anyone! Like I said before,

she is entitled to her opinion but I agree with you that THIS is not

the forum for that. If any of our members want to contact her, I'm

sure she can be found " outside " this group. Thank you for taking

care of this and I'm sorry that you had to wake up to such a hateful

message.

Hugs!

Ellen

>

> I just woke up and was checking my email and found this. I CANNOT

allow anyone to upset my members. There were posts that mentioned

that people were uncomfortable with her in the group and I also got

private emails. As you all can read in the group I DID send her an

email saying she was removed and why. Anyone that wants to try what

ever she is pushing is free to do so and can contact her privately

but I could not allow her to continue to upset anyone.

> Hugs

> nne

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> and nne:

>

> You did not have the nerve to email me. I am sorry you have no

courage to allow women the truth. You will have to live with that

throughout your lives, and answer to your God when the time comes.

MARK MY WORDS.

>

> NO ONE WAS UPSET EXCEPT YOU. You are trying to create an upset

when there was NONE. Do you work for the AMA? Just wondering. How

dare you publicly malign me before the group. I should sue you for

your actions. NO ONE COMPLAINED. People were listening and you

SHUT DOWN THEIR RIGHT TO LISTEN DOWN. hAVE HAD MANY WOMEN EMAIL ME

PERSONALLY FOR INFORMATION AND ADVICE. You are destroying their

right to education. You have no right to do that, ever.

>

> You have done more damage to these women than anyone I know. I

would strongly recommend you " clear my name " before I have counsel

contact you. Google my name and know I am unfraid of anyone who

assaults women's rights.

>

> Blissed be, Annie

>

>

> Breast Cancer Patients Soul Mates for Life

> http://www.geocities.com/chucky5741/breastcancerpatients.html

> BreastCancerStories.com

> http://www.breastcancerstories.com/content/view/433/161/

> Angel Feather Loomer

> www.angelfeatherloomer.blogspot.com

> Check out my other ornaments at

> www.geocities.com/chucky5741/bcornament.html

> Lots of info and gifts at:

> www.cancerclub.com

>

>

[Guest guest]

> Unfortunately, right now, I don't believe we have an 'easy' cure

for cancer. It takes work and a treatment that isn't much fun. Some

day, I hope they find that cure and we can get a magic pill or magic

plant or herb or lifestyle that we can all follow. I don't think the

medical field will look away when that happens....far too many

illnesses and too few doctors for that to happen. They will survive.

I agree. No easy answers in life, especially not for something as

complex as cancer.

And besides, the medical field *isn't* looking away.

I just got a letter from my HMO yesterday asking me, as newly

diagnosed with BC, to participate in a study to research the

effects of diet, herbal remedies, exercise, and other private

choices *along with* BC type, treatments, genetic factors, etc.

And of course I'll join.

This isn't like the usual randomized and controlled clinical trials

used for drugs, but is instead what is called a 'prospective' study:

the participants are enrolled at diagnosis and followed for a number

of years to see how things turn out. The docs aren't assigning the

diets or the herbal remedies or the exercise. Those are the

individual choices of the women. Theoretically this means there will

be more issues with attributing 'causality'. Practically, it means

that they won't have women 'cheating' on an assigned diet or

exercise plan, or dropping out because they don't like it. They will

just be describing what actually happens.

I don't know how long the study has been going on. Usually it is

several years before there is enough data to publish any papers. Of

course I intend to join it. I'll also check to see how long it has

been going on and if they have any preliminary results published. If

there are, I'll share them with this group. If it is new, we will,

alas, have to wait a few years, unless there are other studies out

there which have been around longer.

Ann

[Guest guest]

Sounds like a great study to be in. I know, even when my onc talked about

clinical trials it wasn't one got treatment, the other got placebo. It was

always something in addition to the traditional treatment. Unfortunately, I

never qualified for a trial.

Barb

Re: I received this nasty note from Anne Kasper

> Unfortunately, right now, I don't believe we have an 'easy' cure

for cancer. It takes work and a treatment that isn't much fun. Some

day, I hope they find that cure and we can get a magic pill or magic

plant or herb or lifestyle that we can all follow. I don't think the

medical field will look away when that happens....far too many

illnesses and too few doctors for that to happen. They will survive.

I agree. No easy answers in life, especially not for something as

complex as cancer.

And besides, the medical field *isn't* looking away.

I just got a letter from my HMO yesterday asking me, as newly

diagnosed with BC, to participate in a study to research the

effects of diet, herbal remedies, exercise, and other private

choices *along with* BC type, treatments, genetic factors, etc.

And of course I'll join.

This isn't like the usual randomized and controlled clinical trials

used for drugs, but is instead what is called a 'prospective' study:

the participants are enrolled at diagnosis and followed for a number

of years to see how things turn out. The docs aren't assigning the

diets or the herbal remedies or the exercise. Those are the

individual choices of the women. Theoretically this means there will

be more issues with attributing 'causality'. Practically, it means

that they won't have women 'cheating' on an assigned diet or

exercise plan, or dropping out because they don't like it. They will

just be describing what actually happens.

I don't know how long the study has been going on. Usually it is

several years before there is enough data to publish any papers. Of

course I intend to join it. I'll also check to see how long it has

been going on and if they have any preliminary results published. If

there are, I'll share them with this group. If it is new, we will,

alas, have to wait a few years, unless there are other studies out

there which have been around longer.

Ann

[Guest guest]

>

> Sounds like a great study to be in. I know, even when my onc

talked about clinical trials it wasn't one got treatment, the other

got placebo. It was always something in addition to the traditional

treatment. Unfortunately, I never qualified for a trial.

Ethically they can't give placebo for any disease like cancer. The

usual 'control' for life-threatening diseases such as cancer is

current standard treatment, against which they test the new

treatment to see if it is the same or better. A drug or treatment

which gives the same results that is more stable, has fewer side

effects, is less expensive, needs less time to work, etc., but has

the same outcome is also important. The only thing they might be

giving placebo for is for drugs treating side effects. For cancer

treatment itself they *have* to give you what is standard, not a

placebo.

(Actually, this reminds me of an exam problem given in a beginning

stats class where I taught several years ago. There was news story

about a Canadian MD who didn't follow the protocol for enrolling

women in a trial comparing lumpectomy vs mastectomy, and that was

what the students were supposed to identify as the problem with the

study: protocol not followed. Instead, many students put down the

problem was that it wasn't a double-blind placebo-controlled trial.

I asked them how could a doctor not know which operation s/he was

doing? Or the woman not know whether she had a mastectomy or

lumpectomy? The double-blind, placebo-controlled study might be a

gold standard of some sort, but it's not always practical - or

ethical.)

I have personally participated in asthma clinical trials for new

drugs where there were placebo controls. However, even there I was

given backup medication just in case I *did* get a bad attack.

Asthma can be fatal, but it's nothing like cancer.

There were problems early on with the AIDS/HIV drug trials because

there *was* no standard treatment available yet, so there were

placebo controls. I am sure that it must have been wrenching to be

on ethical review boards at that time and have to make those

decisions.

Ann

[Guest guest]

,

Yes there is a small chance of getting another cancer from side effects of

one/some of the chemo drugs we receive. But I believe its very small percentage.

I took Cytoxan and the onc did tell me before I started that somewhere down the

line there was a small chance of leukemia. Its been over 16 yrs since chemo and

so far I am doing ok.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

BreastCancerStories.com

http://www.breastcancerstories.com/content/view/433/161/

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

Check out my other ornaments at

www.geocities.com/chucky5741/bcornament.html

Lots of info and gifts at:

www.cancerclub.com

Re: Re: I received this nasty note from Anne Kasper

Hi nne,

I'd like to add my thanks for being Moderator for this group. It's an

enourmous responsibility - there are so many messages every day in this

group, and I have to admit sometimes it's just overload and I can't read

everyone. Yet you always send a welcome message to every new member and

a supportive message to everyone who needs one.

The danger in Anne's emails is that she seemed to have an agenda to push

her product vs. any other treatment. She did have some valid points, but

overgeneralized things.

It is true that the currently available chemo & radiation therapy have a

>small< risk of secondary cancer among their side effects. E.g., I was

told there was a <1% chance I could develop secondary leukemia after

Adriamycin. I had to weigh this against the 15% reduction in recurrence

if I took Adriamycin. (The 15% might not be exactly right - chemo brain

strikes again!)

My point is, we need to be as informed as possible in order to decide

the treatment that is right for us. All this information can be very

overwhelming, and very dangerous if half-truths or general statements

are thrown out.

Also, doctors make their recommendations based on the current

information they have (or at least that's how it should be done -

incompetent doctors are another story). One year out from the start of

my treatment (Adriamycin/Cytoxan + Herceptin), there are new studies

that Taxotere/Carboplatin + Herceptin may be as beneficial without the

heart + Leukemia risk.

I asked my oncologist about this new study, and she said it was

promising, but more data & followup was needed before they could

determine whether it was a better regime than AC+H. She did say there

was enough data that she could recommend it to women who had heart

conditions.

Women come to this group in a very vulnerable state, seeking alot of

answers. I hope I didn't stir things up more - just wanted everyone to

be aware there are truths and half-truths.

take care,