introduction

[Guest guest]

Welcome to the list karen c!!! You've come to the right place for support.

[Guest guest]

Suzanne,

What happened at Christmas is my Mother makes the best cookies you have ever eaten, and once I started I couldn't stop. Sugar is like a drug to me. the more I eat the more I want. I get just like a drug addict. Seeking out sweets where ever I can find them. There were days where all I ate was candy and cookies. How I didn't go into a diabetic coma I will never know.

C

[Guest guest]

Lynn,

I don't drink as much water as I should, But have upped my consumption of late. I did not give up coffee while I was losing, but had to watch how much cream I used. That brought me to a stand still a couple of times.

I have a dog show this weekend, but plan on joining a gym on Monday. Have to do something to get my metabolism going.

C

[Guest guest]

Hi -

WOE is way of eating, the philosophy that this is not a diet, but a

way of life, which it sounds like you already know. I hope the

specialist can give you some help, it sounds like you are going

through a tough time right now. What was your trigger at Christmas

for going back to your old habits?

Let us know how we can help!

Suzanne

-- In Atkins_Support_List@y..., teklhaus1@a... wrote:

> Hi all,

> I have been lurking for a few days and have really enjoyed reading

your

> posts.

> I started the Atkins diet the end of May 1999, by December 1999, I

had lost

> 60lbs, give or take a few. It was and is the easiest diet I have

ever tried,

> and the only one I have been able to stick to. I was losing weight

so fast

> that I could see it when I awoke in the morning. I would run to the

scale and

> sure enough I would be down another pound. It was like a dream come

true.

> Well, this past Christmas was a bad one. I gained 10 lbs. back, but

I

> thought....No big deal.........I can take it right off again. Then

in Feb. I

> had a bout with Terrible Fatigue. I have Hypothroid and come to

find out, I

> have been taking way too much synthroid, which has been exhausting

me for

> years and I didn't even know it. I have stopped taking it and am

seeing a

> specialist April 3, but in the mean time I am gaining weight like

crazy. It

> is very scary. My clothes don't fit and I refuse to buy big ones

again. I am

> hoping that when I get back on tract with a new Med that I can go

back to

> losing the added weight. I decided to find a list to help me cope.

I am 47

> years old and live in Connecticut. I show and bred Dachshunds,

besides

> working for my husband during the week.

> You guys are a wealth of information. I haven't been able to read

because it

> would make me so sleepy, so if you don't mind I will pick your

brains. First

> of all.

> What does WOE stand for? I promise not to bombard you with too many

at once.

> lol

>

> Christiano

[Guest guest]

Welcome !

WOE = way of eating

WOL = way of life

we use them instead of the word " diet " to help us remember that it has to be

just this... a way of

eating or a way of life, not just a diet that we will quit doing someday.

How much water are you drinking? I don't know if it will help or not, but it

can't hurt to drink a

lot of water. (I don't drink diet soda at all anymore, no caffeine, and maybe

just a cup of herbal

tea or decaf coffee in the evening. It helps me quite a lot, although I don't

have hypothyroid

problems. Sorry I can't be more helpful.)

Congrats on the weight loss so far... sorry to hear about the medical problems.

Hang in there, you

will get it straightened out again. Keep us posted.

Lynn

teklhaus1@... wrote:

clip

> I started the Atkins diet the end of May 1999, by December 1999, I had lost

> 60lbs, give or take a few. It was and is the easiest diet I have ever tried,

> and the only one I have been able to stick to. I was losing weight so fast

> that I could see it when I awoke in the morning. I would run to the scale and

> sure enough I would be down another pound. It was like a dream come true.

> Well, this past Christmas was a bad one. I gained 10 lbs. back, but I

> thought....No big deal.........I can take it right off again. Then in Feb. I

> had a bout with Terrible Fatigue. I have Hypothroid and come to find out, I

> have been taking way too much synthroid, which has been exhausting me for

> years and I didn't even know it. I have stopped taking it and am seeing a

> specialist April 3, but in the mean time I am gaining weight like crazy. It

> is very scary.

clip

[Guest guest]

Welcome C. WOE mean way of eating.

You came to the right place.

Laverne

think spring

[Guest guest]

- I can relate. I used to eat a whole carton of Double

Chocolate Malt Ball Ice Cream in 1 1/2 days, because I " deserved "

it. Because I had a hard day. Man, I love sweet stuff.

You obviously found the strength to commit yourself to healthy eating

for several months before. You can do it again.

I've been doing this for about 6 weeks or so. I've only lost a total

of 5-6 pounds. I was down 8 at one time, but who knows why it came

back. I'll keep plugging away though. At least I'm not gaining.

Welcome again to the list. You can get an answer to just about any

question here (hint to everyone to reply to my two questions!!!!!!)

Suzanne

[Guest guest]

Hi, ! Welcome to the list. Feel free to ask anything you need to

know.

Terry

[Guest guest]

i hope i'm sending this to the right address, so here goes.

i just turned 40 in September. i've been divorced for two years and i have 9

kids(7 biological, 2 adopted). i live approximately 1 block from my ex and 5

of the kids live with me, 4 with him. We try to keep the kids with at least

one parent most of the time, so we try and balance our work schedules

accordingly. The kids chose the house they would live in and they spend the

night with the other parent as much as they like, provided it's not a school

night. Whew! Makes me tired. lol i have been engaged to a wonderful man for

5 months now. He is very loving and supportive and crazy about the kids.

In the last year, i have had several things that i have asked for medical

opinions on, but never at the same time. i went and saw the eye doctor about

some visual disturbances. i work for a physicians office and he has helped

me try and treat rashes for about 6 months now. The rashes have not

responded to anything we've tried and they seem to come and go at their own

choosing(mostly come). i have had shoulder pain, neck pain, knee pain and

lower back pain. We've tried anti-inflammatory drugs and pain killers. i

also have had headaches about 95% of waking hours. i really am not a

complainer, so even though he was starting to think that arthritis might be

a possibility, he wasn't hearing about all of the symptoms, or hearing about

them every time they happened.

This last Tuesday, i was a mess. i woke up after feeing like i slept on the

edge of awake all night. i had a horrible headache, felt achy, feverish,

both main rashes were back with a vengeance, my IBS was rampant, my right

eye was twitching almost constantly, i had numbness on the left side of my

head, and tingling at the back. i had a presentation to do at my daughter's

school and after completing it i went to work. The physician that i work for

took one look at me and asked what was going on. We sat and had a long chat

and i revealed all the symptoms and my concerns. i was secretly becoming

scared that it could be something like MS or ALS.

After chatting, he said he suspected Lupus. That had not occurred to me. He

suggested blood work, but i said that i could not afford it since i'm not

insured at the moment. He decided the office would absorb the cost if i

would agree to some tests. So, since i was so tired of not knowing what was

going on, i consented.

my RA came back positive the next day. my ANA came back positive two days

later. It was positive in the homogenous pattern(1:160). We got those

results at about 4pm on Friday, so the only thing he said was that it was

looking like we were on the right track, but he wants to run the results by

a rheumatoid specialist on Monday. So, this weekend i've been reading. i

found a book on dermatology. i found a picture that looks EXACTLY like my

rashes. It was on the page titled SLE.

So, here i sit with no " official " diagnosis, but feeling like it is coming.

i wish i just knew at this point. i also don't know what tests should be

done from here. i am faced with the problem of no insurance and not wanting

an " official " diagnosis because i'm not sure i could ever be insured with

that on my record.

Sorry this was so long. i'm open to any advice or comments. i'm very

grateful to find this list.

bren

_________________________________________________________________

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[Guest guest]

what a good idea.. thanks . Carol

Re: introduction

Hiya ..As far as your insurance goes ..make sure you tell ALL doctors involved with your care, that until youare insured to giveyou NO written diagnosis. Doctors are required togive a diagnosis in writing ONLY when they are dealing with an insurancecompany. If you are not insured, they dont have to report it BUT even ifthe diagnosis of Lupus (or whatever) is listed in your records, it canbe used against you later.They can list "connective tissue disease suspected" as their diagnosis.This diagnosis covers a variety of ailments from arthritis to Lupus tomany many others. BUT .. since it is a suspect diagnosis .. you can NOTbe denied insurance.Oh yea . smiles.. welcome to the roller coaster ride of test results ..hugs ..Moderator"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

I have interspersed my views in your ail

below. As I am sure you’ll know, having visited the Yana

site, I have no medical qualifcations whatsoever, but in the 14 plus years

since I was diagnosed I have picked up some knowledge about this disease. Many

of the questions you have raised are similar to the questions I had on hearing

my diagnosis. Very few of them can be answred definitively. One of the old

timers, Aubrey Pilgrim who sadly passed on from an unrelated brain tumor always

used to counsel the newly diagnosed that they had to bear in mind at all times

what he termed The Golden Rule of Prostate Cancer: There Are No Rules.

All the best

Prostate men need enlightening, not

frightening

Terry Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html

My

name is . My

husband, , (age 59) was diagnosed with prostate cancer 2 days ago.

I’m writing because I have more time available to process and organize

any responses than he does. Thanks to any and all of you who can help

with some questions below.His specs are : PSA (1 yr ago) 2.1, GS 6

(3/3), CS T2b. He has PC on the left side (38%, 12%, 11%), none on the

right side. (9 cores were taken from the left, 3 on the right, but they

were physically merged for analysis into 3 on each side, one each for the base,

mid and apex). His bPSA was 0.8 in 1999. It started climbing

in 2008 and last check in 2010 was 2.1. The urologist did not take a

pre-biopsy PSA. We live in small town in Wyoming

and so have to travel for medical care but we’re not too far from Denver.[Terry

Herbert]  Based

on current information, ’s interested in either Robotic Surgery

(probably Vattikuti Institute in Detroit)

or Proton Beam Therapy (Loma ) for treatment. He’s not closed

to other options, but these look best from what we have read. We need to

do more research about these options (cost, etc.) He will get a second

opinion probably from the University

of Colorado Anshutz

cancer center, (Dr. Crawford’s group).

So, that’s

the basics. Here’s a few questions.

1. How

long is it ok to wait for treatment (a few months? 3 months? 6?) My instincts are to treat PC like I would a

scorpion: extract the beast and run like heck . [Terry

Herbert]  There

is a number of studies on this subject. The prospective studies with the

longest tiem of observation are the AS (Active Surveillance) studies. The

current view is that for men with the kind of diagnosis that your husband has –

termed Low Risk in some quarters – a delay of years makes no difference

in observed outcome. More conservative views are that delays of up to 12 months

in such diagnoses are unlikely to affect the outcome.

2. ’s

a statistician, so he can easily digest statistics and would appreciate being

directed to some study summaries to look at. Any suggestions for good

summaries of studies? (Summaries are better than individual papers, if

possible, but anything is welcome.) [Terry Herbert] On my Pge Choosing a Treatment (http://www.yananow.org/choices.htm

) I say <s The lack of relevant data makes extremely difficult to make an

informed decision as to which of the many treatment options is 'best' for you.

Effective Health Care published an excellent paper in February 2008 - Comparing

the Effectiveness of Therapies for Localized Prostate Cancer - the Executive Summary (which

runs to 20 pages and is in pdf format) is well worth printing and studying. <snip>

 This paper provides  the summaries you might find of interest. At a high statistical

level, there are summaries of relevant statistics on the SEER site http://seer.cancer.gov/

and on the most recent study published by the American Cancer Society at http://caonline.amcancersoc.org/cgi/content-nw/full/59/4/225

I found these high level statistics of interest because they illustrate so

clearly that the majority of prostate cancer deaths occur in men over the age

of 80 – so your husband has 20 years to go before he reaches the median

age.

We know about

Partin tables, the PRCI and YANA website and

have Strum’s, Walsh’s and McHugh’s books. The ideal

would be something like the Partin tables (classify by Gleason score, PSA) but

the tables would have other information instead of staging: useful

information (for each treatment method) would be: 5 year % within PSA

bounds, 10 year % within PSA bounds, % incontinent, % with ED). [Terry

Herbert]  I

have never seen such tables but I can extract this kind of information from the

stories on Yana. Of course these have no

scientific basis whatsoever, but they can be a useful overall guide as to what

has happened to men over time, especially as most of them are prospective

rather than retrospective. If your husband is interested I can let him have Excel

spreadsheets to array – just mail me off line

3. Any impressions

or comments about the Vattikuti Institute’s robotic surgery or Loma

PBT? Or a strong belief we should consider something else?[Terry

Herbert]  Available

studies are unable to demonstrate clearly any clear advantage of one therapy

over another. There seems little doubt that PBT therapy at Loma is a very

satisfying experience and indeed, even 14 years ago it would have been my

choice had I decided that therapy was a requirement of my diagnosis (and if I

had the funds!). But that view is based on anecdotal evidence, no scientic

evidence.

4. Any

thoughts on what sorts of situations a ploidy analysis is

beneficial? [Terry Herbert]  Hmmmm…..

5. Does

anyone know about Dr. Israel Barkin’s telephone coaching

service? A YANA Colorado mentor suggested him.

We’re looking for someone to consult with who’s unbiased about

preferred treatment and very knowledgeable and up-to-date about diagnosis and

treatment. I gather that such an unbiased person is difficult to

find. I haven’t been able to track down such a person in the Colorado area yet.

Part of the reason I want to find such a person is that there are some slight

oddities about ’s situation (though I’m sure there are

oddities about everyone’s). [Terry Herbert] What I liked about Dr Barken was a quote

attributed to him: “ The overall approach I believe in is doing the Minimal

Intervention that the patient feels comfortable about combined with the Maximum

Surveillance that medical science allows.” You can get some idea of how

he goes about his coaching by listening to the archived copies of his radio Call-Ins

at http://www.pcref.org/call_past.php

Below are the sort

of questions I’d ask such a big picture doctor. I am getting pretty

detailed here, but I welcome any thoughts anyone has. I won’t take

it as “medical advice” in place of a doctor.

1. His

last PSA is from a year ago. From what I read, getting a

current pre-treatment PSA is critical to proper staging and also for

post-treatment success evaluation. [Terry Herbert]  Hmmmm…. PSA is not involved in the

staging process – see http://www.yananow.org/Staging.htm

.. PSA is one of the factors used in nomograms to calculate probabilities,

including post-treatment evaluation. Some nomograms are based on small and old

data. How long after a biopsy can you get an accurate PSA? [Terry

Herbert]  There

seems to be a general consensus that about six weeks is sufficient time after a

biopsy procedure. It may not be so in all cases as there is quite a range of

side effects to biopsy Is a PSA from a year ago good

enough?[Terry Herbert]  Well, that shows the PSA from a year ago, that’s all

it does show. One swallow does not a summer make. Single PSA readings can be

misleading because PSA is NOT prostate cancer specific. Don’t know if you

read my piece PSA 101 at http://www.yananow.org/PSA101.htm

which might give you some background to the test – and the link from

there to the experiment I ran over 28 days to gets some idea of how much PSA

could vary – that’s at http://www.yananow.org/PSAexperiment.htm

Again, not scientific and your husband may be interested in the analyses that

others carried out on the figures which are linked from that site

2.

He’s had an abnormal DRE for 1 ½ years: the left side felt abnormal

by his PCP. [Terry Herbert]  In many cases a palpable gland is not associated with prostate

cancer, since there are many other conditions that can give rise to the change

in texture of the gland. This does not appear to be the case for since

his positive biopsy results are on the left Could that tell us

anything about ’s situation? [Terry Herbert] It is a factor in the staging – he would

be staged T2a, b or c on the basis of this information. E.g. what

does it mean that he has a low GS but a palpable tumor for 1 ½

years? Does this mean the PC is more likely to be aggressive,

more likely to have penetrated the capsule?[Terry Herbert]  The primary measure of aggressiveness is

the Gleason Score. has an ‘entry level’ Gleason Score of

3+3=6 (see http://www.yananow.org/StrangePlace/forest.html#gleason

) Other factors are tumor size – there are some studies that indicate

that a tumor may have to reach a critical mass before it departs the gland and

the fact that there are so many positive biopsy specimens may be related to

estimated tumor size.

3.

His PSA is low but still rising. [Terry Herbert]  You have not quoted many measurements to define

this sattement I understand that some aggressive

forms of PC are associated with low PSA [Terry Herbert]  Yes, that is the case. But those very aggressive

forms with low PSA are usually associated with high Gleason Scores of 9 or 10. but

the local urologist said that’s not the case for because his PSA is

rising and in the aggressive forms it doesn’t rise.[Terry

Herbert]  That

is not always so, because in some of the aggressive forms, the tumor is growing

so fast that even though individual cells are not leaking so much PSA, the

cumulative effect is to see a rise in PSA levels. [Terry

Herbert] a

better guide may be that his Gleason Score is so low.

I’d like to validate this impression, given the problems with no

pre-biopsy PSA.

4.

As noted above, his left biopsy cores (the side with PC and where his prostate

feels abnormal) were somehow physically combined which means (I think) that

it’s harder now to tell the extent and location of the PC. [Terry

Herbert]  That

is very poor practice. The samples should always be separated and properly labeled.

Is it not possible to get more slides from the biopsy material? And have you

sought a second opinion – see http://www.yananow.org/pathlabs.htm

The scoring of biopsy material can be variable depending on the experience of

the pathologist or their employees and since Glaeson Scores are such an interal

part of the diagnostic process, they should be done by the best qualified

people. (I called the medical assistant before the biopsy to make

sure the cores were kept separate. She assured me they would

be.) Is this enough of a problem for accurate staging and

treatment that he should have another biopsy (which would of course postpone

treatment since I’m guessing he’d have to wait awhile for that).[Terry

Herbert]  I am

not sure that another biopsy would be a good idea right now. Gather the

information you can from existing data and if you feel that more is required,

then by all means have another biopsy, recognizing that there are some risks involved

in these procedures, but give the poor old gland a chance to recover –

say three to six months!

Thanks.

I really appreciate all the good thinking and care that goes into this

group. I’m equally amazed at suddenly finding ourselves in

the situation of having to face prostate cancer (too bad) and at finding so

much support (really good). [Terry Herbert]  Hope this helps – if not keep asking

those questions, but don’t rush into treatment until you are certain that

the path  you choose is the one that seems to suit you and best. All

therapies and choices have risks and rewards – the balance in these is

what is important, in my view.

Laramie, Wyoming