Update

[Guest guest]

Hi my name is Judi......

[Guest guest]

Hi Judi,

I'm Pete. How much weight have you lost? How long have you been on the diet?

I just started. I have lost 7 lbs in 10 days. i'm very happy about that.

Pete

[Guest guest]

hi I'm new at this but sometimes when I reply to someone by hitting the reply

button I get my own e-mail back!...Sometimes I don't..Can't figure it

out...Help!...

[Guest guest]

Hi Pete...I started on this wonderful " diet " at Thanksgiving ...So I guess I

would have to say the end of Nov..By Jan. 3 when I went to the Dr. for a

check-up I had lost 55 lbs...my colesterol went down from 286 to 211 and I

have not felt this good in 30 yrs!.....I did not have a scale then, but knew

I felt great and had gone down 2 sizes in clothes..Then I got " cocky " and

lost NONE for 31/2 months..didn't gain but didn't lose either...And I was

pretty good..But it seems I need to be on the induction diet all the

time!...So far I have lost 70 lbs. but have 80 more to go!...And hopefully by

Oct. of the is year for my daughters wedding...Help. Nice to " tslk " with you

I saw your name answering other folks e-mails..Your a women right?...Gotta go

Judi

[Guest guest]

Hi Betty Lou...Maybe we can learn together...Judi

[Guest guest]

Hi Betty Lou..I'm 50......And also my goal weight is 130!... but I have 80

more lbs.to go to reach it...Sure I'd love to help each other ,looking

forward to it....Judi

[Guest guest]

Hi Judi,

yes I'm a woman. Every pound of me. LOLYou have done good.

Your story is an inspiration also. So actually you lost another 15 lbs just

here in the past few months? Am I reading that right? After 3 and 1/2

months you started induction again and lost 15lbs?That would be like in 6 to

8 weeks? Wow. Thats a pretty good loss. You will probably reach your goal or

darn near close to it in Oct. I hope you do.

When you say you got " cocky " how many carbs is a " cocky " ? If you didn't gain

or lose I'd say how ever many carbs you were taking in those 3 and 1/2

months will be what it'll take for you to maintain.

Thats pretty good huh? well Judi, don't stray you'll be fine good luck

Pete

[Guest guest]

Hi judi nice to talk an meet you.

--- Jmd6789@... wrote:

> From: Jmd6789@...

>

> Hi my name is Judi......

>

>

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[Guest guest]

Same thing happens to me! I'm new at this also, the diet too! BetteLou

[Guest guest]

you will get your reply back because you subscribed to the list nd you

get thelist mail if you dont get it isbecause it didnt get sent

--- Jmd6789@... wrote:

> From: Jmd6789@...

>

> hi I'm new at this but sometimes when I reply to

> someone by hitting the reply

> button I get my own e-mail back!...Sometimes I

> don't..Can't figure it

> out...Help!...

>

>

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[Guest guest]

Hi Judy,

I have been on the diet about 8 weeks, only 12 pound loss, but as I told

I thinks it's because I don't eat enough! She agreed and suggested

snacking more. I just don't have a big appetite, drink lots of water and

all the right things, so I'll just start eating more. I am 5'6, started at

161 and now run between 150-151, want to get to 130 soooo bad. Welp, good

luck to both of us., on the 'puter and the diet.

BetteLou

[Guest guest]

Hi guys that is what the list is for all of us learn sometime i am

only on week 7 of this diet. so fire away we are all here to support

and help each other if we can. sue

--- Jmd6789@... wrote:

> From: Jmd6789@...

>

> Hi Betty Lou...Maybe we can learn together...Judi

>

>

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[Guest guest]

Dear kathy,

Wow! I think your pulmo was being kind to the previous docs. Hope the IV

gets rid of the PA for now. I will be thinking good thoughts for you.

(mother of and Sami)

update

> From: Ldybug762@...

>

> Well everyone I thought that I would update you on our situation. As I

> mentioned before, apparently the genetic testing that was done on our

family

> 7 years ago showed that I tested positive for CF. But, the docs, " oops,

> sorry maam forgot to tell you " . Well as of yesterday, I am definitely

> positive for CF. I am growing PA in my cuultures and am now on IV meds.

As

> my pulmo says, " those doctors surely did you a mis-service by not telling

> you. " Oh well. On top of all this business with me, is apparently

> starting up with another lung infection, as he needed to do three extra

> breathing treatments at school yesterday......Can we all hear Kathy

> say.....arghhhhhhhhh.....

> Kathy S.

>

> > ***********************

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

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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>

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> Come chat at our webpage! http://members.tripod.com/cfparents/

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[Guest guest]

Kathy S.,

My gosh girl, so now not only do you have to deal with your child's CF,

but your own as well.Have you been on any kind of meds all these years?

Mandy

Seth's mommy

update

>From: Ldybug762@...

>

>Well everyone I thought that I would update you on our situation. As I

>mentioned before, apparently the genetic testing that was done on our

family

>7 years ago showed that I tested positive for CF. But, the docs, " oops,

>sorry maam forgot to tell you " . Well as of yesterday, I am definitely

>positive for CF. I am growing PA in my cuultures and am now on IV meds.

As

>my pulmo says, " those doctors surely did you a mis-service by not telling

>you. " Oh well. On top of all this business with me, is apparently

>starting up with another lung infection, as he needed to do three extra

>breathing treatments at school yesterday......Can we all hear Kathy

>say.....arghhhhhhhhh.....

>Kathy S.

>

>>***********************

>This is a secular list.

>***********************

>

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

>The opinions and information exchanged on this list should

>IN NO WAY

>be construed as medical advice.

>

>PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

>Come chat at our webpage! http://members.tripod.com/cfparents/

>

>

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>Subscribe: cfparents-subscribeonelist

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>

[Guest guest]

Can you say lawsuit? I am a lawyer and would be very interested in talking

to you about this. Where are you? Please contact me either directly at

JFKDC@... or on the phone at . Feel free to call collect.

[Guest guest]

Hi everyone-

Thanks for all the support. I really appreciate it. I am still not yet

feeling any better, but as I know with Ky and it seems to take 4-5

days before feeling much of an improvement.

In answer to the questions.....

Kimmie does NOT have CF. and are children from my first

marriage. Their father is only a carrier. My second husband (their

step-father) has CF.

I have been treated with oral antibiotics all my life. The docs have

just always wondered why it seemed to take so long for me to get over my

infections. ALthough I have been hospitalized several times for pneumonia.

During these hosp. I received IV meds. But I cannot remember which ones they

were. I am on Tobra now. I am also on breathing treatments. I have used

inhaler and nebs for many years now. Last yearm my pulmo finally put me on

mucomyst. I have to admit that I was nt always great at doing my nebs in the

past. I always did them if I felt a need to, but that has all changed now.

SInce my diagnosis, I am on Pulmozyme, prednisone, albuterol, atrovent,

TOBI, mucomyst and I am doing CPT at least twice a day. I have a flutter and

my doc is thinking about me getting a vest. Ky and already have the

machine so all I need is a vest.

I had been trying to go to work, but I have decided at this point, that I

just dont feel well enough to work through this infection. (I work in an

elementary school as a Kindergarten assistant in the morning and at church in

the afternoon I do desktop publishing). I can do my afternoon job at home,

but after trying to work today, I have decided that I must call in and take

off next week. UGH. That means no paycheck for that week. Don't know how

everything will work out, but I am sure that it will.

Thanks again for all your support.

Kathy

[Guest guest]

Joanne,

That is great news about .On the sleep issue,I reccomend a book by

Dr.Ferber.It has you let the baby cry alittle bit the first night,5

minutes,increasing the amount each subsequent night.I also agree with your

pediatrician though about him being hungry,Do you have him on a pretty good

feeding schedule during the day?If you could increase his intake during the

day perhaps he won't be as hungr during the night.

I don't think a 4 month old needs a sleep disorder clinic yet.My first two

children did noy start sleeping through the night until they were about 9

months old.After that they were great sleepers.Hang in there!

Lauri

[Guest guest]

I have been following the oxaliplatin drug pretty closely as of late.

In fact I met a guy at Gildas club that was on Oxaliplatin and 5fu.

He was doing very well -apparently tumors downsized for the first 3

monthts. Neuropathy and side effects began to get more culmulative in

nature-Latest scan shows continued growth and elevated CEA's. He is

very upset, and in discussing the situation with his ONC, thye have

decided to stop treatment with Oxaliplatin.

I seem to be in the same position as you with some nodules now on the

lungs that dont show on PET.

While Oxaliplatin seems to be the next product to be approved for

first line treatment-Its results are less than brilliant-perhaps jsut

slightly better than cpt-11 which I believe shows response in only

10% of the patients.

Please let me kn ow what you decide. After my " Cancer Free " summer,

I'm sure it will be time fro me to also make that very difficult

decision.

All the best-Mark

> Well, after three consultations this week, it seems all paths lead

to the Oxaliplatin (ECOG3200) trial. Apparently, the medical world

assumes the nodules in my lungs (which did not show uptake on pet

scan) are cancer too small to show positive on pet. I tend not to

think they are, as they didn't grow from Feb. cat scan to May ct.

But, this means no surgery to remove the peritoneal tumors. One doc

said that if I get onto the study and the visible tumors stabilize or

shrink, and we can get a biopsy of the lungs which shows no cancer, I

would possibly have an option of surgery at Sloan Kettering (she has

referred two other patients to this very aggressive, 'kamikaze

surgeon). That is my hope - to arrest it where it is, and get it out

before any organs are involved.

> The trial is phase 3, randomized. Options are Bevacizumab,

Oxaliplatin, 5FU, leucovorin versus Oxaliplatin, 5FU, and Leucovorin

versus Bevacizumab alone. After two months if no improvement or

worse, go off and try something else.

> One other possibility is getting Oxaliplatin thru compassionate

use, get on waiting list as two people per month are added.

> All oncs. seem to feel that Oxaliplatin will be commercially

available this fall, and will be the 'new standard' treatment. All

also agree that while it shows to extend life (avg. 4 mos.) it is no

miracle drug and not worth going to Europe for treatment (where it is

commonly used).

> Also, none seemed to feel that diet and supplements would matter at

this point. For prevention prior to diagnosis, yes. But for

metastasized disease, no.

> I realize that many of you have had success, partially due to the

supplement and diet regimens you follow, but find it interesting that

the medical world doesn't acknowledge this part of healing.

> Hope you all are having a great holiday, reflecting and

appreciating the freedoms we enjoy in our country.

> Take Care,

> Kathy O.

[Guest guest]

> While Oxaliplatin seems to be the next product to be approved for

> first line treatment-Its results are less than brilliant-perhaps

jsut

> slightly better than cpt-11 which I believe shows response in only

> 10% of the patients

I guess you mean as a second line therapy? Kathy had Camptosar as a

stage III, but I don't think anything GREW while she was on

chemo (that happened LATER I guess)...and technically I'm not sure

she would be considered a " Camptosar failure " . Her situation seems a

little unique in that there is probably not much experience with

stage III's who have progressed after " triplet " chemo. So maybe her

chances with Oxal would be better than this?

Best Wishes,

> > Well, after three consultations this week, it seems all paths

lead

> to the Oxaliplatin (ECOG3200) trial. Apparently, the medical world

> assumes the nodules in my lungs (which did not show uptake on pet

> scan) are cancer too small to show positive on pet. I tend not to

> think they are, as they didn't grow from Feb. cat scan to May ct.

> But, this means no surgery to remove the peritoneal tumors. One

doc

> said that if I get onto the study and the visible tumors stabilize

or

> shrink, and we can get a biopsy of the lungs which shows no cancer,

I

> would possibly have an option of surgery at Sloan Kettering (she

has

> referred two other patients to this very aggressive, 'kamikaze

> surgeon). That is my hope - to arrest it where it is, and get it

out

> before any organs are involved.

> > The trial is phase 3, randomized. Options are Bevacizumab,

> Oxaliplatin, 5FU, leucovorin versus Oxaliplatin, 5FU, and

Leucovorin

> versus Bevacizumab alone. After two months if no improvement or

> worse, go off and try something else.

> > One other possibility is getting Oxaliplatin thru compassionate

> use, get on waiting list as two people per month are added.

> > All oncs. seem to feel that Oxaliplatin will be commercially

> available this fall, and will be the 'new standard' treatment. All

> also agree that while it shows to extend life (avg. 4 mos.) it is

no

> miracle drug and not worth going to Europe for treatment (where it

is

> commonly used).

> > Also, none seemed to feel that diet and supplements would matter

at

> this point. For prevention prior to diagnosis, yes. But for

> metastasized disease, no.

> > I realize that many of you have had success, partially due to the

> supplement and diet regimens you follow, but find it interesting

that

> the medical world doesn't acknowledge this part of healing.

> > Hope you all are having a great holiday, reflecting and

> appreciating the freedoms we enjoy in our country.

> > Take Care,

> > Kathy O.

[Guest guest]

{{{}}}}

Have a WONDERFUL vacation....you are most definitely in my prayers.

Thank you so much again for your caring and support.

Best,

Deb

[Guest guest]

Happy travels, . Hope you get to see the Canyon - it sure puts life in

perspective. I'll be thinking good thoughts for your CT results. Have a

great time. We'll miss you!

Terri.

[Guest guest]

,

Enjoy your trip! I'll be praying for you and anticipate good news from the

scan and upcoming procedure. Thanks again for all you do for us )

Take Care,

Kathy O.

Update

> Hi All,

>

> Well today I went in for a chest CT - this is the last " hurdle " to

> clear before my scheduled surgery/RFA next week (Sept 26). If the

> surgeon doesn't see anything in the CT, everything is on schedule.

> On the other hand, if he does see something and refuses to operate,

> that will set me back a bit and I will keep looking until I find

> another surgeon who will!

>

> The good news is I am leaving on my business/vacation trip tomorrow

> to Arizona, have 3 days to fool around, maybe see the Grand Canyon,

> etc. Assuming the surgery is as scheduled, I'll be returning just in

> time for that pre-surgery day " purge 'n fast " (!)

>

> So far as is known (i.e. unless new disaster hits from today's CT), I

> have a single, small 1 or 2 cm met in the liver, next to the colon.

> While you'd THINK this would be easy, it isn't because the met is in

> a very bad location for laproscopic/percutaneous RFA. The surgeon

> thinks he will " probably " have to do open surgery so that he can get

> the ultrasound probe on the liver to visualize the met and ablate it

> without damaging the colon in the process. This is made more

> difficult by adhesions from prior liver/colon resection which will

> have to be cut before the surgeon can even get anywhere near the

> problem.

>

> After tonight I'll be offline a bit (NO COMPUTER is going with me on

> my vacation!). Maybe I'll take you guys a picture with my digital

> camera and post it up if I see anything interesting LOL!

>

> Best Wishes to All,

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks a!

LOL, I'm scared to rest too much, think its pretty important to try

to bounce back to normal as quickly as possible after surgery! Not

good for the immune system to be " down " too long....

<<I am fortunate enough at this point in time not to have CC>>

And you NEVER WILL, because you are gonna stay on top of these

colonoscopies and there is NO WAY this wicked stuff can sneak past

constant surveillance!!!

Hope things are still going well for your Mom! Think she will be

able to return to part time work?

Best Wishes,

>

> Wow, you are amazing... do you ever rest?? LOL You are such an

inspiration and example to us all...I am fortunate enough at this

point in time not to have CC, I am a caregiver/family member... but

you have inspired me to do more, try harder and never quit no matter

what it is....

> Thank you

[Guest guest]

Hi Cliff,

Glad to hear things are getting better! Hoping for the best with

your CEA. I'm supposed to have a CEA done too, but so far I've been

stalling because I'm afraid to find out what it is LOL!

If you're interested in " black salves " and such, there's a

website/book you might want to take a look at

Main Website

http://www.cancersalves.com/introduction/zncl.html

Book - " Cancer Salves " by Ingrid Naimen

http://www.cancersalves.com/book.html

Book Review

http://www.cancersalves.com/reviews.html

I haven't read the book yet, but it looks interesting to me (as you

probably know, researching anti-cancer herbs is one of

my " hobbies " )! It's supposed to be a history of Native American and

turn-of-the-century healers, etc., together with actual formulas for

some of the concoctions they made. I think it would probably give a

lot more info than can be found on the internet about this topic, and

well worth taking the time for further research if one is interested

in this sort of thing.

I noticed the Two Feathers site is very secretive about exactly what

goes into their formula. This is apparently pretty common, as noted

by Naimen:

[start snip]

As in the past, most cancer salve recipes produced today are also

secret. Though I personally have published all the formulae I could

find, about a hundred of them, the people who make the salves or

pastes rarely divulge their ingredients much less the proportions or

methods of preparations. I have interviewed dozens of such people,

but in only a few instances have I been able to confirm the formulae

for the products. The usual story is that an individual, on his

deathbed, entrusted the cancer cure secret to a single descendent who

was sworn to secrecy.

I am quite convinced that the power of these deathbed commitments is

an important factor in the secrecy, but I suspect that many of the

formulae are quite similar, that they were common drug store items

until roughly the turn of the century, and that they are not nearly

so mysterious as their trustees believe them to be.

[stop snip]

SOURCE:

http://www.cancersalves.com/introduction/secrecy.html

Also - I'd be a little nervous about taking internally a formula

which can supposedly singe off warts....when I have no idea what

herbs or other things are in it!!! For example, as Naimen's website

notes, many of these salves contain the herb Bloodroot (I know the

TwoFeathers site claimed their product doesn't, but it could contain

other herbs like this and I'm just using it as an example). I have a

copy of A. Duke's " 's Field Guide to Eastern/Central

Medicinal Plants and Herbs " ( Duke has several books on herbs in

print and has done a TON of research - see amazon.com!). The

Bloodroot entry says " formerly, root was used as an ingredient in

cough medicines. American Indians used the root for rheumatism,

asthema, bronchitis, lung ailments, laryngitis, fevers; also an

emetic. Root juice is applied to warts " . Hmm, " emetic " means it

could make you vomit, but ok....then it goes on to say:

" WARNING: TOXIC. DO NOT INGEST. Duke has experienced

Tunnel Vision from nibbling the root " (Yikes!!!)

The Field Guide lists hundreds of herbs, many of which are noted as

having " anticancer " properties, and some of which probably were

used by Native Americans. Many (but not all) of these things do

have a " warning: do not ingest " label. Some of the ones that don't

you can find in the health food store or at iherb.com, since they're

relatively safe (so far as is known). I guess I would be pretty

hesitant to take any " secret formula " that I couldn't look up the

ingredients in my Field Guide, just to see what Duke the herb

expert has to say about the side effects/toxicity of the

ingredients. Some herbs used routinely in the past have later been

found to cause liver damage and other problems, I'd probably avoid

those (well, my poor liver has been so sliced, diced, radiated and

burned the last year and a half I'm pretty nervous 'bout stressing it

LOL!)

Just a thought - hope this helps! ;o)

Best Wishes,

> The eye drops for the side effects of Xeloda worked. Also, no runny

> nose. My feet are slowly healing, but my hands are still red. Had

my CEA

> drawn today and get the results next Monday. Because of the side

> effects, am off Xeloda for three weeks. I will know if I will

continue

> with the Xeloda next week and if I do ... wil be at a lowered dose.

This

> is an interesting site ... don't know if it works or not.

> http://www.healingformula.net/testimonials1.htm Take care and God

> bless. Cliff . . . . Control: " When nothing is sure, Everything is

> possible. " Margaret Drabble . . " ALL things are possible. Pass

it on.

> "

[Guest guest]

That's great news!

I think they'll keep you on for 6 months, that seems pretty standard

for stage III and I think they'd do the same for NED (no evidence of

disease) stage IV. If you hit the 6 month mark, everything

looks clear and nobody's talking about a break, you oughtta ask why

not!

Hang in there friend!

Best,

>

> --

> The doc reviewed my CT scan and said it showed nothing of concern,

> which was good news. He said since I'm tolerating the chemo so

well,

> he's keeping me on it until who-know-when. So here we go again -

and

> again - and...