introduction

[Guest guest]

Welcome Anne Marie. Glad you finally decided to post!

Amy Swinderman

Live aloha!

__________________________________

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[Guest guest]

Welcome Anne Marie. Glad you finally decided to post!

Amy Swinderman

Live aloha!

__________________________________

Yahoo! Mail Mobile

Take Yahoo! Mail with you! Check email on your mobile phone.

http://mobile.yahoo.com/learn/mail

[Guest guest]

Welcome Anne Marie. Glad you finally decided to post!

Amy Swinderman

Live aloha!

__________________________________

Yahoo! Mail Mobile

Take Yahoo! Mail with you! Check email on your mobile phone.

http://mobile.yahoo.com/learn/mail

[Guest guest]

Hello Anne Marie,

Welcome to the group. We are a diverse group of people who share our lives with each other. For some of us this is the only place where we find acceptance for who and what we are. Having this type of diagnosis is difficult because most of us look healthy, but few understand the unrelenting pain we go thru day in and day out. This is where we can let our hair down, so to speak.

I look forward to getting to know you better.

Kathleen in N.C.

[Guest guest]

Hello Anne Marie,

Welcome to the group. We are a diverse group of people who share our lives with each other. For some of us this is the only place where we find acceptance for who and what we are. Having this type of diagnosis is difficult because most of us look healthy, but few understand the unrelenting pain we go thru day in and day out. This is where we can let our hair down, so to speak.

I look forward to getting to know you better.

Kathleen in N.C.

[Guest guest]

-Judith, The journal is an excellent idea! I have worked with several

AS students and they can be a joy as well as a frustration. What is

's particular interest? If you want to reply off board I'll try

to work this foggy brain and help you come up with some ideas. Do

share the " spoons " story with him! The link was posted here a few

days back. Maybe someone can add it to the links on this board or

repost it for you. No need for apologies. I often Lurk when I'm not

able to participate. Hugs, Deb in Ohio

-- In Fibromyalgia_Support_Group , " Judith "

<judithhealth@g...> wrote:

> I apologize for lurking so much but things have been hectic at my

> house lately. I wanted to introduce myself to you.

>

> My name is Judith. I am 50 years old and the single parent of a 21

> year old son (he will be 21 on the 1st). has AS which

> is a high functioning form of autism. was diagnosed with

> fibromyalgia in February of this year. We currently live in Port

> Orchard, Washington but will be moving to Hawthorne, Nevada in

> October (first week).

>

> I am trying to learn as much as I can about fibro so I can help my

> son. So far what i have been doing is encouraging him to make a

> journal/log about how he feels and what he was doing at the time

and

> what pain level he is at when it happens. I am very open to any

and

> all suggestions.

>

> I look forward to making new friends here and learning lots about

> fibro.

>

> hugs........judith (aka ladybug)

[Guest guest]

-Judith, The journal is an excellent idea! I have worked with several

AS students and they can be a joy as well as a frustration. What is

's particular interest? If you want to reply off board I'll try

to work this foggy brain and help you come up with some ideas. Do

share the " spoons " story with him! The link was posted here a few

days back. Maybe someone can add it to the links on this board or

repost it for you. No need for apologies. I often Lurk when I'm not

able to participate. Hugs, Deb in Ohio

-- In Fibromyalgia_Support_Group , " Judith "

<judithhealth@g...> wrote:

> I apologize for lurking so much but things have been hectic at my

> house lately. I wanted to introduce myself to you.

>

> My name is Judith. I am 50 years old and the single parent of a 21

> year old son (he will be 21 on the 1st). has AS which

> is a high functioning form of autism. was diagnosed with

> fibromyalgia in February of this year. We currently live in Port

> Orchard, Washington but will be moving to Hawthorne, Nevada in

> October (first week).

>

> I am trying to learn as much as I can about fibro so I can help my

> son. So far what i have been doing is encouraging him to make a

> journal/log about how he feels and what he was doing at the time

and

> what pain level he is at when it happens. I am very open to any

and

> all suggestions.

>

> I look forward to making new friends here and learning lots about

> fibro.

>

> hugs........judith (aka ladybug)

[Guest guest]

Welcome Judith!

WOW - I wish i had a family member of friend who would go to the lengths of actually signing onto this kind of site to find out more about my illness! God bless you!!!!!!!!!! You will learn alot from this site!!

Aloooooooha!

Jaana

Moderator / Member De-Bouncerator / humble Group servant

Introduction

I apologize for lurking so much but things have been hectic at my house lately. I wanted to introduce myself to you.My name is Judith. I am 50 years old and the single parent of a 21 year old son (he will be 21 on the 1st). has AS which is a high functioning form of autism. was diagnosed with fibromyalgia in February of this year. We currently live in Port Orchard, Washington but will be moving to Hawthorne, Nevada in October (first week).I am trying to learn as much as I can about fibro so I can help my son. So far what i have been doing is encouraging him to make a journal/log about how he feels and what he was doing at the time and what pain level he is at when it happens. I am very open to any and all suggestions.I look forward to making new friends here and learning lots about fibro.hugs........judith (aka ladybug)

[Guest guest]

Welcome Judith!

WOW - I wish i had a family member of friend who would go to the lengths of actually signing onto this kind of site to find out more about my illness! God bless you!!!!!!!!!! You will learn alot from this site!!

Aloooooooha!

Jaana

Moderator / Member De-Bouncerator / humble Group servant

Introduction

I apologize for lurking so much but things have been hectic at my house lately. I wanted to introduce myself to you.My name is Judith. I am 50 years old and the single parent of a 21 year old son (he will be 21 on the 1st). has AS which is a high functioning form of autism. was diagnosed with fibromyalgia in February of this year. We currently live in Port Orchard, Washington but will be moving to Hawthorne, Nevada in October (first week).I am trying to learn as much as I can about fibro so I can help my son. So far what i have been doing is encouraging him to make a journal/log about how he feels and what he was doing at the time and what pain level he is at when it happens. I am very open to any and all suggestions.I look forward to making new friends here and learning lots about fibro.hugs........judith (aka ladybug)

[Guest guest]

Welcome Judith!

WOW - I wish i had a family member of friend who would go to the lengths of actually signing onto this kind of site to find out more about my illness! God bless you!!!!!!!!!! You will learn alot from this site!!

Aloooooooha!

Jaana

Moderator / Member De-Bouncerator / humble Group servant

Introduction

I apologize for lurking so much but things have been hectic at my house lately. I wanted to introduce myself to you.My name is Judith. I am 50 years old and the single parent of a 21 year old son (he will be 21 on the 1st). has AS which is a high functioning form of autism. was diagnosed with fibromyalgia in February of this year. We currently live in Port Orchard, Washington but will be moving to Hawthorne, Nevada in October (first week).I am trying to learn as much as I can about fibro so I can help my son. So far what i have been doing is encouraging him to make a journal/log about how he feels and what he was doing at the time and what pain level he is at when it happens. I am very open to any and all suggestions.I look forward to making new friends here and learning lots about fibro.hugs........judith (aka ladybug)

[Guest guest]

hi,

my name is kellie and i have recently been iagnosed with ms. i know

this may be a bit of a contradiction but i do have trouble with

typing so i have given up on using caps, please forgive me for this

in advance, will explain more later.

i was diagnosed with my ms tentatively the 7th of march after my

first mri. i was given a confirmed diagnosis the first part of may,

after they did everything i think they possibly could to me. i have

been told that this has progressed faster than normal and my neuro is

kind of surprised with my symptoms. I have had numerous problems so

far and they do not seem to be getting any better.

I am going to be 32 this month, I have 3 kids (girl 14, boy 11, girl

6) and 3 step daughters (19, 17, and 14). the 6 yr old is the only

one living with my husband and i right now though. I was a substitute

teacher for the school district we live in, secretary of my daughters

pto, co-leader for her girl scout troop and assisted with many

classroom parties and school functions. all that was until ms took a

massive hold in mid feb. it all started with me having problems with

my balance and i thought it was due to an ear infection i had

previously. it seemed to get worse and not better over time so i went

into my reg dr. he had an mri done and said he believed it to be ms.

from there h sent me to a neuro and i had more bloodwork done at one

time than i think i have had done in my entire life(and that is a

lot!!), another mri and lumbar puncture. he confirmed the diagnosis

in may and we did the iiv steriods. this did nothing to help and i

hated the side effects so we will not be doing that again. i have

been put on home health for pt and ot and i dont see much improvement

with that either. i am unable to drive now because i am not able to

stay in one lane. i have tremors pretty bad in my arms/hands and have

difficulty walking. i also have been having severe headaches and pain

in my legs. i have started the drug avonex and am stair stepping up

to the reg dose. i have only had 2 injections so far and get my 3rd

today but am not liking the side effects from it either. apprently i

fall into the 4 percent of people who lost their hair in the drug

trials and no one thought to tell me of this side effect until i

called asking if this was normal. i am also experiencing all the flu

like symptoms and fever and just about all the side effects they say

are a possibility with this drug. it may be due to my weight too

though since i am not a very big person, i am 5 ft 2 in and weigh

about 120, i was weighing about 90 lbs about 3 months ago also.

to add to the mix i also have 3 dogs, 2 cats of my own and 7 kittens

that were homeless se i am trying to find them homes. my dogs are all

different kids, the smallest and youngest is a cute little girl named

coco, she is half min pincher and half toy pom. she looks like a

chihuahua with a longer snout and curled tail. the next one is a 5 yr

old shi tzi, we just took him in from my nurse who couldnt keep him

any longer. the biggest baby is my english mastiff, duchess. she was

a yr old on feb 16th and idesperately miss getting to spend time with

her!! i was the primary care taker for all our critters until ms took

hold, now i am unable to deal with the mastiff since she is so big

and still thinks of herself as a small lap dog lol.

i look forward to hearing about everyones experiences and learning a

lot from the " seasoned " msers. thanks for letting me join!!

kellie

[Guest guest]

Thank God that you at least follow email etiquette!

 Many people suffering from MS are unable to navigate a keyboard much less worry

about  using the ALLCAPS  BUTTON on your  keyboard, then to most people don't

know what correct email etiquette is!

[Guest guest]

HI MARK, I USE IT ALOT, CAN READ IT BETTER? LOL!

[Guest guest]

(snip)

> My urologist is recommending a full body bone scan ASAP. I am

> considering getting a second opinion on the biopsy first. Is this a

> good idea? I would appreciate a recommendation for a pathology group

> that specializes in prostate biopsy.

Here is a list of well-respected labs and individuals:

Bostwick Laboratories [800] 214-6628

Dianon Laboratories [800] 328-2666 (select 5 for client services)

Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162

Grignon (Michigan) [313] 745-2520

Jon Oppenheimer (Tennessee) [888] 868-7522

UroCor, Inc. [800] 411-1839

In civilized jurisdictions, tissue specimens are the property of the

patient; not the lab and not the medic. Sometimes it is necessary to be

firm.

Last I heard, the cost is ~ $350, more if further testing is ordered. As

a second opinion, it is covered by insurance and Medicare.

> I retired to NE TN but am spending the winter in S. FL. If I opt for

> surgery, I would prefer to have it done in S. FL . I would also

> appreciate any information on an experienced surgeon in the area.

Some can be found via this portal on the encyclopedic website of the

Prostate Cancer Research Institute (PCRI):

http://prostate-cancer.org/resource/find-a-physician.html

Please also see the section, Newly Diagnosed.

I heartily recommend _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.

Lastly, I recommend maintaining a file of every record generated through

this case, especially test results. Patients have a right to such

information and it could be absolutely priceless.

Please let us know how it goes.

Regards,

Steve J

" Patients with high Gleason score prostate cancer often do not secrete

very much PSA, and often their tumors make other biologic products such

as CGA (chromogranin A), NSE (neuron specific enolase), CEA

(carcino-embryonic antigen) and PAP (prostatic acid phosphatase).

Before any treatment is initiated it is important to obtain baseline

values of these markers so that if any are abnormally elevated they can

be used as parameters of successful treatment. "

-- B. Strum, MD

Medical Oncologist

PCa Specialist

[Guest guest]

(snip)

> My urologist is recommending a full body bone scan ASAP. I am

> considering getting a second opinion on the biopsy first. Is this a

> good idea? I would appreciate a recommendation for a pathology group

> that specializes in prostate biopsy.

Here is a list of well-respected labs and individuals:

Bostwick Laboratories [800] 214-6628

Dianon Laboratories [800] 328-2666 (select 5 for client services)

Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162

Grignon (Michigan) [313] 745-2520

Jon Oppenheimer (Tennessee) [888] 868-7522

UroCor, Inc. [800] 411-1839

In civilized jurisdictions, tissue specimens are the property of the

patient; not the lab and not the medic. Sometimes it is necessary to be

firm.

Last I heard, the cost is ~ $350, more if further testing is ordered. As

a second opinion, it is covered by insurance and Medicare.

> I retired to NE TN but am spending the winter in S. FL. If I opt for

> surgery, I would prefer to have it done in S. FL . I would also

> appreciate any information on an experienced surgeon in the area.

Some can be found via this portal on the encyclopedic website of the

Prostate Cancer Research Institute (PCRI):

http://prostate-cancer.org/resource/find-a-physician.html

Please also see the section, Newly Diagnosed.

I heartily recommend _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.

Lastly, I recommend maintaining a file of every record generated through

this case, especially test results. Patients have a right to such

information and it could be absolutely priceless.

Please let us know how it goes.

Regards,

Steve J

" Patients with high Gleason score prostate cancer often do not secrete

very much PSA, and often their tumors make other biologic products such

as CGA (chromogranin A), NSE (neuron specific enolase), CEA

(carcino-embryonic antigen) and PAP (prostatic acid phosphatase).

Before any treatment is initiated it is important to obtain baseline

values of these markers so that if any are abnormally elevated they can

be used as parameters of successful treatment. "

-- B. Strum, MD

Medical Oncologist

PCa Specialist

[Guest guest]

There is an MD that posts on this site from FL. Ken, maybe you and

he can visit. On the bone scan recommendation by your Uro., that

sounds like a very good call on his part; especially if it turns out

you have something of an aggressive nature.

Sincerely, Mick -- Abilene, TX

>

> Hello.

>

> Just joined and would like to introduce myself.

>

> I am 64 and was informed Wed. that I have " aggressive " prostate

> cancer. I was given two Gleason scores, 3+5 and 4+4, both from the

> left side. My most recent PSA, Nov. '08, was 6.3 . Previous PSA's

> were 4.5 in Jan. '08, 5.9 in Nov. '07 and 4.8 in June '07. The 5.9

was

> considered inaccurate because I had ridden a bicycle the day before

> the test.

>

> My urologist is recommending a full body bone scan ASAP. I am

> considering getting a second opinion on the biopsy first. Is this a

> good idea? I would appreciate a recommendation for a pathology

group

> that specializes in prostate biopsy.

>

> I retired to NE TN but am spending the winter in S. FL. If I opt

for

> surgery, I would prefer to have it done in S. FL . I would also

> appreciate any information on an experienced surgeon in the area.

>

> Thanks for any help.

>

> Ken Bradshaw

>

[Guest guest]

There is an MD that posts on this site from FL. Ken, maybe you and

he can visit. On the bone scan recommendation by your Uro., that

sounds like a very good call on his part; especially if it turns out

you have something of an aggressive nature.

Sincerely, Mick -- Abilene, TX

>

> Hello.

>

> Just joined and would like to introduce myself.

>

> I am 64 and was informed Wed. that I have " aggressive " prostate

> cancer. I was given two Gleason scores, 3+5 and 4+4, both from the

> left side. My most recent PSA, Nov. '08, was 6.3 . Previous PSA's

> were 4.5 in Jan. '08, 5.9 in Nov. '07 and 4.8 in June '07. The 5.9

was

> considered inaccurate because I had ridden a bicycle the day before

> the test.

>

> My urologist is recommending a full body bone scan ASAP. I am

> considering getting a second opinion on the biopsy first. Is this a

> good idea? I would appreciate a recommendation for a pathology

group

> that specializes in prostate biopsy.

>

> I retired to NE TN but am spending the winter in S. FL. If I opt

for

> surgery, I would prefer to have it done in S. FL . I would also

> appreciate any information on an experienced surgeon in the area.

>

> Thanks for any help.

>

> Ken Bradshaw

>

[Guest guest]

On January 5, evidently referring to (A Primer on Prostate Cancer, Larry

S wrote:

> " The Empowered patient's Guide " was written in 2005.† Much has changed

> since then.

Not the fundamentals.

Regards,

Steve J

[Guest guest]

> I am 64 and was informed Wed. that I have " aggressive "

> prostate cancer. I was given two Gleason scores, 3+5 and 4+4,

> both from the left side. My most recent PSA, Nov. '08, was

> 6.3. Previous PSA's were 4.5 in Jan. '08, 5.9 in Nov. '07 and

> 4.8 in June '07. The 5.9 was considered inaccurate because I

> had ridden a bicycle the day before the test.

....

> My urologist is recommending a full body bone scan ASAP. I am

> considering getting a second opinion on the biopsy first. Is

> this a good idea? I would appreciate a recommendation for a

> pathology group that specializes in prostate biopsy.

....

Hello Ken,

Sorry to hear of your diagnosis.

On the question about biopsies, I think Steve Jordan has already

given you his standard and very cogent advice. Yes, get a

second opinion. I'm especially confused about your sentence

that reads " 3+5 and 4+4 " . I'm having trouble understanding what

the pathologist meant by that. He seems to be saying that

either the predominant pathology was Gleason 3 with secondary

Gleason 5, or else Gleason 3 and 5 were both insignficant and

both the primary and secondary pathology were Gleason 4.

Huh? Did the urologist provide any interpretation of that?

Does it mean that there were two cancerous samples on the left

side, one of which was 3+5 and one 4+4?

While a second opinion on the biopsy is always a good idea, it

seems to me to be particularly important in your case where the

report is somewhat ambiguous.

[bear in mind though that I am not a doctor and no kind of

expert in any of this. Perhaps the " 3+5 and 4+4 " report is very

common and I just don't happen to have heard of one before.]

On the specific issue of the bone scan, Dr. Gerald Chodak has

produced a little video giving his opinion of it. I think it's

worth watching:

http://www.prostatevideos.com/prostate-cancer/grading-and-staging-of-prostate-ca\

ncer/bone-scan-for-assessing-cancer-spreading-to-the-bones/

or:

http://tinyurl.com/8rlmoa

Dr. Chodak claims that, for men with a PSA under 20, a bone scan

will produce, on average, 3 true positives and 130 false

positives out of every 1,000 patients. He doesn't think bone

scans are a good idea for men who are facing prostate cancer for

the first time (i.e., not a recurrence) with low PSA scores.

I suggest asking your doctor:

1. Does he know the statistics on true and false positives for

men with your PSA?

2. If the scan is positive, and given that the vast majority of

positives on men with low PSA are false, how will he determine

whether the suspect area in the scan is actually cancer or not?

Will he then have to do a bone biopsy? Is there another way?

Finally, here is some general advice from a non-specialist (me)

whose opinions are probably worth what you're paying for them.

If your combined Gleason score is 8, then your cancer is

potentially aggressive and should be treated. I believe that a

Gleason 8 cancer is likely to kill you sometime in the next

8-20 years if left untreated. At age 64, you might reasonably

expect to live long enough for that to happen.

With the current treatment options, the best chance at defeating

cancer is always the first chance. A patient will typically get

surgery or radiation. If it fully succeeds, he will be free of

PCa for the rest of his life. If it fails, he cannot do the

surgery or radiation again, though with surgery he can try

radiation if the surgery fails [there is a dispute about whether

that is an advantage for surgery, or whether a patient who fails

surgery and then succeeds with radiation should have had

radiation the first time.]

I won't claim to know what the best treatment is. In my

inexpert opinion, there is no best treatment. Surgery and a

number of different forms of radiation have comparable outcomes

- but with different side effects. However I do know that

different doctors have different success rates.

Therefore, since you only get one first shot at the cancer, you

want that to be the very best shot you can take, i.e., with the

best surgeon or radiation oncologist you can find. If you

choose surgery, get a guy who does 50, 100, or more

prostatectomies every year, not a guy who mainly treats

incontinence and urinary infections and does a prostatectomy

every two or three months. If you choose radiation, get a

radiation oncologist who does lots of prostates, not one who

does breasts, hips, ankles, elbows, brains, and oh yes,

prostates.

So, shop around. Seek advice from other patients (as you are

doing here) and from other docs and nurses that you might know.

Find out who has a good reputation. Get a consultation with

that doctor. Form your own opinion of how good a doctor he or

she is. Be sure to consult with at least one surgeon and one

radiation oncologist.

Best of luck.

Alan