Re: WOW!! (Announcement Of Sorts)

[Guest guest]

Dear Eileen,

Your story moves me so much. This is truly great news for the LDN treatment

community. Thank you so much for your courage in fighting to have the

treatment. In addition to comfort levels being improved, have you yourself

had improvement in NK cell levels, do you know?

I am so sorry for your struggles. I pray for your recovery.

--

At 06:34 PM 3/15/2010, you wrote:

>I am SO excited!!!

>

>One of the difficult things about having stage IV cancer (and there are

>many rather unpleasant things about it, of course), has been having to

>give up on the idea of being able to donate my organs in order to help

>other people - thus depriving me of one way of making meaning out of what

>is otherwise a meaningless and awful thing.

>

>But now my Integrative Specialist, Dr. Plotnikoff of the Penny

>Institute, has given me back a little bit of that meaning.

>

>He was so impressed by the relief from pain and other symptoms after he

>prescribed the LDN for me that he spent the last few months gathering up

>the resources and information... and now he, in partnership with Minnesota

>Oncology & Hematology (the practice in which my oncologist works) and the

>Piper Breast Center (the center where my breast surgeon practices), is

>going to be doing a study on LDN in women with metastatic breast

>cancer!! All because I spent the last year fighting for the prescription,

>and finally got it... and got relief.

>

> >From my POV the study is not perfect - it will be on women who are

> taking Aromatase Inhibitors for their cancer, and I'm not entirely clear

> on whether they are looking for relief from side effects of the AI's or

> whether they are looking for relief from side effects of the cancer

> itself. And I have some doubts as to whether women on hormonal

> treatments are the best candidates for a study on LDN, and even whether

> breast cancer is the best/most responsive cancer to be testing on.

>

>BUT along with studying for symptom relief (pain, etc), they will also be

>measuring whether the LDN increases NK cell levels in the study subjects

>over the period of treatment. So it should have some bearing on LDN as a

>treatment for other cancers and conditions.

>

>So it's not a perfect study (IMO, of course), but it's a study. And other

>women who are suffering may get relief - and if the NK arm of the study

>bears out it may help LDN get studied further for other types of cancer -

>and all of THAT is a blessed, wonderful thing, something that creates some

>meaning out of this awful situation of mine. It's a bittersweet thing for

>me, but the sweet is definitely there!

>

>~Eileen

~~~ There is no way to peace; peace is the way ~~~~

--A.J. Muste

[Guest guest]

That is terrific news Eileen. I am a new group member and have mostly

been reading. I also live in Minnesota (Minneapolis). I have a

friend with breast cancer that metastasized to kidney and most

recently to brain. I might pass this information along to her. I

have another friend who just passed away yesterday (Sunday) after a

many year fight with breast cancer that metastasized to her bones,

wish I had known about this option sooner to share with her - she had

an amazing drive and desire to live and will be missed.

Jaxi

On Mon, Mar 15, 2010 at 6:34 PM, Eileen <ravensegge@...> wrote:

> I am SO excited!!!

>

> One of the difficult things about having stage IV cancer (and there are many

rather unpleasant things about it, of course), has been having to give up on the

idea of being able to donate my organs in order to help other people - thus

depriving me of one way of making meaning out of what is otherwise a meaningless

and awful thing.

>

> But now my Integrative Specialist, Dr. Plotnikoff of the Penny

Institute, has given me back a little bit of that meaning.

>

> He was so impressed by the relief from pain and other symptoms after he

prescribed the LDN for me that he spent the last few months gathering up the

resources and information... and now he, in partnership with Minnesota Oncology

& Hematology (the practice in which my oncologist works) and the Piper Breast

Center (the center where my breast surgeon practices), is going to be doing a

study on LDN in women with metastatic breast cancer!!  All because I spent the

last year fighting for the prescription, and finally got it... and got relief.

>

> From my POV the study is not perfect - it will be on women who are taking

Aromatase Inhibitors for their cancer, and I'm not entirely clear on whether

they are looking for relief from side effects of the AI's or whether they are

looking for relief from side effects of the cancer itself.  And I have some

doubts as to whether women on hormonal treatments are the best candidates for a

study on LDN, and even whether breast cancer is the best/most responsive cancer

to be testing on.

>

> BUT along with studying for symptom relief (pain, etc), they will also be

measuring whether the LDN increases NK cell levels in the study subjects over

the period of treatment.  So it should  have some bearing on LDN as a treatment

for other cancers and conditions.

>

> So it's not a perfect study (IMO, of course), but it's a study.  And other

women who are suffering may get relief - and if the NK arm of the study bears

out it may help LDN get studied further for other types of cancer - and all of

THAT is a blessed, wonderful thing, something that creates some meaning out of

this awful situation of mine.  It's a bittersweet thing for me, but the sweet is

definitely there!

>

> ~Eileen

>

> ------------------------------------

>

>

[Guest guest]

Thank you, ! Ironically, I will not qualify for what is sort of my own study... they never did a test of my NK levels, and of course now I've been on LDN for three months, so who knows what the difference might be. So all we know is that my tumors are shrinking very gradually (about average result for the Aromasin treatment, but that's with mine being a Grade 4 advanced cancer, very very aggressive), and that my energy levels are up and my bone pain is practically gone (it wasn't responsive to pain meds, so I wasn't sleeping and I was very depressed). The joint pain is still there, and weight gain and some headaches, all side effects from the Aromasin... so I don't know if the LDN helped with the AI side effects, I sort of suspect it was more from the *cancer* side effects. But who knows? In any case, at least now I feel like I might have helped other people, and that's a huge thing, I'm very happy!~EileenOn Mar 15, 2010, at 7:22 PM, Baker wrote:

Dear Eileen,

Your story moves me so much. This is truly great news for the LDN treatment

community. Thank you so much for your courage in fighting to have the

treatment. In addition to comfort levels being improved, have you yourself

had improvement in NK cell levels, do you know?

I am so sorry for your struggles. I pray for your recovery.

--

At 06:34 PM 3/15/2010, you wrote:

>I am SO excited!!!

>

>One of the difficult things about having stage IV cancer (and there are

>many rather unpleasant things about it, of course), has been having to

>give up on the idea of being able to donate my organs in order to help

>other people - thus depriving me of one way of making meaning out of what

>is otherwise a meaningless and awful thing.

>

>But now my Integrative Specialist, Dr. Plotnikoff of the Penny

>Institute, has given me back a little bit of that meaning.

>

>He was so impressed by the relief from pain and other symptoms after he

>prescribed the LDN for me that he spent the last few months gathering up

>the resources and information... and now he, in partnership with Minnesota

>Oncology & Hematology (the practice in which my oncologist works) and the

>Piper Breast Center (the center where my breast surgeon practices), is

>going to be doing a study on LDN in women with metastatic breast

>cancer!! All because I spent the last year fighting for the prescription,

>and finally got it... and got relief.

>

> >From my POV the study is not perfect - it will be on women who are

> taking Aromatase Inhibitors for their cancer, and I'm not entirely clear

> on whether they are looking for relief from side effects of the AI's or

> whether they are looking for relief from side effects of the cancer

> itself. And I have some doubts as to whether women on hormonal

> treatments are the best candidates for a study on LDN, and even whether

> breast cancer is the best/most responsive cancer to be testing on.

>

>BUT along with studying for symptom relief (pain, etc), they will also be

>measuring whether the LDN increases NK cell levels in the study subjects

>over the period of treatment. So it should have some bearing on LDN as a

>treatment for other cancers and conditions.

>

>So it's not a perfect study (IMO, of course), but it's a study. And other

>women who are suffering may get relief - and if the NK arm of the study

>bears out it may help LDN get studied further for other types of cancer -

>and all of THAT is a blessed, wonderful thing, something that creates some

>meaning out of this awful situation of mine. It's a bittersweet thing for

>me, but the sweet is definitely there!

>

>~Eileen

[Guest guest]

Eileen,You are awesome... the way you are so concerned for others even as you go through the fight of your life! The world would be such a better place if more people had a heart like yours. : )My prayers are with you,AnitaOn Mar 15, 2010, at 7:34 PM, Eileen wrote:I am SO excited!!!One of the difficult things about having stage IV cancer (and there are many rather unpleasant things about it, of course), has been having to give up on the idea of being able to donate my organs in order to help other people - thus depriving me of one way of making meaning out of what is otherwise a meaningless and awful thing.But now my Integrative Specialist, Dr. Plotnikoff of the Penny Institute, has given me back a little bit of that meaning. He was so impressed by the relief from pain and other symptoms after he prescribed the LDN for me that he spent the last few months gathering up the resources and information... and now he, in partnership with Minnesota Oncology & Hematology (the practice in which my oncologist works) and the Piper Breast Center (the center where my breast surgeon practices), is going to be doing a study on LDN in women with metastatic breast cancer!! All because I spent the last year fighting for the prescription, and finally got it... and got relief.From my POV the study is not perfect - it will be on women who are taking Aromatase Inhibitors for their cancer, and I'm not entirely clear on whether they are looking for relief from side effects of the AI's or whether they are looking for relief from side effects of the cancer itself. And I have some doubts as to whether women on hormonal treatments are the best candidates for a study on LDN, and even whether breast cancer is the best/most responsive cancer to be testing on. BUT along with studying for symptom relief (pain, etc), they will also be measuring whether the LDN increases NK cell levels in the study subjects over the period of treatment. So it should have some bearing on LDN as a treatment for other cancers and conditions.So it's not a perfect study (IMO, of course), but it's a study. And other women who are suffering may get relief - and if the NK arm of the study bears out it may help LDN get studied further for other types of cancer - and all of THAT is a blessed, wonderful thing, something that creates some meaning out of this awful situation of mine. It's a bittersweet thing for me, but the sweet is definitely there!~Eileen

[Guest guest]

I'm glad you joined us, Jaxi. Have you gotten your Rx for the LDN yet?

My oncologist is with MOHPA, but although he ok'd the Rx, he did not give it.

That was from the doctor at the Penny Institute, across the street from

Abbott Northwestern.

At this point I don't know whether the MOHPA and Piper Breast Center folks will

be giving prescriptions, or just funneling patients into the study. I know Dr.

P has talked to the doctor who is doing (or has just finished?) a study at the

UofM, but I don't know if the U is involved in this study or not. I do not know

if it is going to be taking folks from other states, or just local patients. I

won't be seeing Dr. P again until June, but I will keep an eye out for any

postings or other information if and when it becomes available. And I will ask

Dr. P about it again when I see him...

The requirements, as far as I can tell, are that the participant must have

advanced stage breast cancer, and that they be on aromatase inhibitors. I don't

know how soon the study will start, although I think my doctor is anxious to

start soon, as he has a few patients who are having pretty severe side effects

from the AI's and he'd like to get them on the study.

I wish the best for your friend - she is lucky to have someone like you in her

corner!

~Eileen

On Mar 15, 2010, at 7:37 PM, jaxi wrote:

> That is terrific news Eileen. I am a new group member and have mostly

> been reading. I also live in Minnesota (Minneapolis). I have a

> friend with breast cancer that metastasized to kidney and most

> recently to brain. I might pass this information along to her. I

> have another friend who just passed away yesterday (Sunday) after a

> many year fight with breast cancer that metastasized to her bones,

> wish I had known about this option sooner to share with her - she had

> an amazing drive and desire to live and will be missed.

>

> Jaxi

>

> On Mon, Mar 15, 2010 at 6:34 PM, Eileen <ravensegge@...> wrote:

>> I am SO excited!!!

>>

>> One of the difficult things about having stage IV cancer (and there are many

rather unpleasant things about it, of course), has been having to give up on the

idea of being able to donate my organs in order to help other people - thus

depriving me of one way of making meaning out of what is otherwise a meaningless

and awful thing.

>>

>> But now my Integrative Specialist, Dr. Plotnikoff of the Penny

Institute, has given me back a little bit of that meaning.

>>

>> He was so impressed by the relief from pain and other symptoms after he

prescribed the LDN for me that he spent the last few months gathering up the

resources and information... and now he, in partnership with Minnesota Oncology

& Hematology (the practice in which my oncologist works) and the Piper Breast

Center (the center where my breast surgeon practices), is going to be doing a

study on LDN in women with metastatic breast cancer!! All because I spent the

last year fighting for the prescription, and finally got it... and got relief.

>>

>> From my POV the study is not perfect - it will be on women who are taking

Aromatase Inhibitors for their cancer, and I'm not entirely clear on whether

they are looking for relief from side effects of the AI's or whether they are

looking for relief from side effects of the cancer itself. And I have some

doubts as to whether women on hormonal treatments are the best candidates for a

study on LDN, and even whether breast cancer is the best/most responsive cancer

to be testing on.

>>

>> BUT along with studying for symptom relief (pain, etc), they will also be

measuring whether the LDN increases NK cell levels in the study subjects over

the period of treatment. So it should have some bearing on LDN as a treatment

for other cancers and conditions.

>>

>> So it's not a perfect study (IMO, of course), but it's a study. And other

women who are suffering may get relief - and if the NK arm of the study bears

out it may help LDN get studied further for other types of cancer - and all of

THAT is a blessed, wonderful thing, something that creates some meaning out of

this awful situation of mine. It's a bittersweet thing for me, but the sweet is

definitely there!

>>

>> ~Eileen

[Guest guest]

> In any case, at least now I feel like I might have helped other people,

> and that's a huge thing, I'm very happy!

>

>~Eileen

Not, *might* have. You have definitely already helped other people, there

is no doubt about it.

--

~~~ There is no way to peace; peace is the way ~~~~

--A.J. Muste

[Guest guest]

Thank you Eileen. I have not tried LDN yet. I just recently became

aware of it and have been " doing my research. " I like to be as

informed about something as I can before jumping in the deep end.

I have Ulcerative Colitis. Dx over 10 years ago. I have had ups and

downs with it. Taken too many meds for too long. Got pissed and

stopped taking all the meds for periods of time. Have calmed it down

with diet changes at times. Managed to lose my gall bladder a few

years back and now feel like most days are a crap shoot with regard to

my GI tract.

I also have cea, dx over 20 years ago. (yee gods I am getting old)

I also have periodic boughts of joint pain. Been tested for RA,

Lupus, Lymes, etc and nothing came out definative.

What intrigues me about this is UC and cea are both " autoimmune "

related. I have been tested for other " autoimmune " related illnesses

over the years with nothing fitting the bill. LDN seems to assist the

immune system into working more optimally. So, I would very much like

to give it a go.

I am looking for a doctor who would prescribe in the Minneapolis/St

area. I doubt your oncologist would appreciate a call from me

though. LOL ... anyone know of any docs in this area I could meet

with? Maybe a DO as they are often more open minded to alternative

treatments. A prescription that I can get filled by a reputable

compounding pharmacy feels better to me than ordering from overseas,

but I might consider that option if need be.

Who here has ordered from overseas and what has your experience been

with the process and the product?

Jaxi

On Mon, Mar 15, 2010 at 7:57 PM, Eileen <ravensegge@...> wrote:

> I'm glad you joined us, Jaxi.  Have you gotten your Rx for the LDN yet?

>

> My oncologist is with MOHPA, but although he ok'd the Rx, he did not give it.

 That was from the doctor at the Penny Institute, across the street from

Abbott Northwestern.

>

> At this point I don't know whether the MOHPA and Piper Breast Center folks

will be giving prescriptions, or just funneling patients into the study.  I know

Dr. P has talked to the doctor who is doing (or has just finished?) a study at

the UofM, but I don't know if the U is involved in this study or not.  I do not

know if it is going to be taking folks from other states, or just local

patients.  I won't be seeing Dr. P again until June, but I will keep an eye out

for any postings or other information if and when it becomes available.  And I

will ask Dr. P about it again when I see him...

>

> The requirements, as far as I can tell, are that the participant must have

advanced stage breast cancer, and that they be on aromatase inhibitors.  I don't

know how soon the study will start, although I think my doctor is anxious to

start soon, as he has a few patients who are having pretty severe side effects

from the AI's and he'd like to get them on the study.

>

> I wish the best for your friend - she is lucky to have someone like you in her

corner!

>

> ~Eileen

>

>

> On Mar 15, 2010, at 7:37 PM, jaxi wrote:

>

>> That is terrific news Eileen.  I am a new group member and have mostly

>> been reading.  I also live in Minnesota (Minneapolis).  I have a

>> friend with breast cancer that metastasized to kidney and most

>> recently to brain.  I might pass this information along to her.  I

>> have another friend who just passed away yesterday (Sunday) after a

>> many year fight with breast cancer that metastasized to her bones,

>> wish I had known about this option sooner to share with her - she had

>> an amazing drive and desire to live and will be missed.

>>

>> Jaxi

>>

>> On Mon, Mar 15, 2010 at 6:34 PM, Eileen <ravensegge@...> wrote:

>>> I am SO excited!!!

>>>

>>> One of the difficult things about having stage IV cancer (and there are many

rather unpleasant things about it, of course), has been having to give up on the

idea of being able to donate my organs in order to help other people - thus

depriving me of one way of making meaning out of what is otherwise a meaningless

and awful thing.

>>>

>>> But now my Integrative Specialist, Dr. Plotnikoff of the Penny

Institute, has given me back a little bit of that meaning.

>>>

>>> He was so impressed by the relief from pain and other symptoms after he

prescribed the LDN for me that he spent the last few months gathering up the

resources and information... and now he, in partnership with Minnesota Oncology

& Hematology (the practice in which my oncologist works) and the Piper Breast

Center (the center where my breast surgeon practices), is going to be doing a

study on LDN in women with metastatic breast cancer!!  All because I spent the

last year fighting for the prescription, and finally got it... and got relief.

>>>

>>> From my POV the study is not perfect - it will be on women who are taking

Aromatase Inhibitors for their cancer, and I'm not entirely clear on whether

they are looking for relief from side effects of the AI's or whether they are

looking for relief from side effects of the cancer itself.  And I have some

doubts as to whether women on hormonal treatments are the best candidates for a

study on LDN, and even whether breast cancer is the best/most responsive cancer

to be testing on.

>>>

>>> BUT along with studying for symptom relief (pain, etc), they will also be

measuring whether the LDN increases NK cell levels in the study subjects over

the period of treatment.  So it should  have some bearing on LDN as a treatment

for other cancers and conditions.

>>>

>>> So it's not a perfect study (IMO, of course), but it's a study.  And other

women who are suffering may get relief - and if the NK arm of the study bears

out it may help LDN get studied further for other types of cancer - and all of

THAT is a blessed, wonderful thing, something that creates some meaning out of

this awful situation of mine.  It's a bittersweet thing for me, but the sweet is

definitely there!

>>>

>>> ~Eileen

>

>