New to Group

[Guest guest]

The mainstream doctors have really managed to clobber your friend,

having given him all three of their " wonder cures " --- surgery,

radiation and chemotherapy.

What is he capable of doing at this point? Can he eat? Can he walk?

What condition is he in at this point?

That will make a real difference as to what he can do alternatively.

That's why I ask.

Elliot

[Guest guest]

Something else that comes to mind, perhaps because the pancreas

(blood sugar) is involved:

Perhaps your friend is suffering from depression and a temporary anti-

depressant could stir him out of his lethargy.

When I was first diagnosed with lymphoma in 1989, I joined a cancer

client support group in which there was a man diagnosed with

pancreatic cancer. He, too, appeared resigned to doing nothing more

than what the doctors prescribed.

He would just sulk in his basement between treatments and support

group meetings. I even suggested, at one point, that he do a one-day

prep and parachute jump, just to try to shake him out of the

doldrums.

He did nothing, though, and he soon died.

There certainly are people who survive pancreatic cancer, but in

order for there to be a way, there must be a will.

While waiting for my radiation treatment the other day, I had a

conversation with one of the men who is being radiated for prostate

cancer. He told me his doctor had told him he'd die of old age before

the cancer became serious, but that his doctor had wanted " to do

something, " so decided he should get radiation.

I always figure if I have a choice between doing nothing mainstream

versus doing something mainstream, I will choose the nothing, and

will use the time I have while doing nothing to try to do something

postive alternatively.

Anyway, I expect your friend's doctors would have no problem with

prescribing an anti-depressant for your friend if they think it might

help him and if they think it would not have any negative effect on

the cancer or any other negative effect. Just a thought.

Elliot

Elliot

[Guest guest]

Elliot wrote:

> What condition is he in at this point?

> That will make a real difference as to what he can do alternatively.

> That's why I ask.

>

Thanks for the response. he can eat. it doesn't always stay down but he

also has a feeding tube. He can walk and has some energy but sleeps

alot which may be the depression or the chemo-radiation combination.

Thanks,

[Guest guest]

Hi, .

In that case I recommend GREEN SMOOTHIES to which you could add a

supplement called " Greens First. " He can sip green smoothies through a

straw. You make a green smoothie as follows:

Put in VitaMix machine:

A couple handfuls of greens---kale, collards, beet greens, mustard

greens, chard, etc

1/2 to 1 cup berries, peaches, melon, or other fruit

1/2 an apple

1 or more frozen bananas

Blend very well in VitaMix till smooth. The idea is to add enough fruit

so that the mixture tastes GOOD.

I don't doubt that he is tired from the chemo/radiation. Maybe the

lethargy depression will pass once he recovers some from the effects of

those. Surgery, of course, will make one very tired, as well.

He might also think about getting a rebounder with a stabilizing bar

and do some gentle bouncing on it. He should also get out into the

sunligh and fresh air for at least a half hour each day.

Elliot

[Guest guest]

Thank you all so much for taking the time to write. You all have been so wonderful and encouraging. I really feel like this is just a detour in our lives that will make us all stronger. I know it will be a hard road at times, but I believe we will make it through. I appreciate all the prayers and stories everyone has to offer.

Connie

[ ] Re: new to group

Hi Connie,I very seldom write but I did want to tell you about my daughter Missy who was diagnosed with ALL just two months before her 5th birthday. She needed to be on chemo for 2.5 years. She is now 20 years old and is doing wonderful. I enjoy sharing the fact that she has done so well. I hope this will give you some encouragement as you go along. Kay Mom to Missy age 20 >> Hi everyone,> I have a son with ds who was just diagnosed with leukemia. His name is and he will be five in September. I was hoping to talk to some other parents who are going through the same thing. We live in Loveland, Co and we have spent the last 5 days at Children's Hospital in Denver. He has ALL Leukemia. They started him on

chemotherapy immediately and will be going home tomorrow for out patient treatment. I would love to hear other stories of other children. Thanks.> > Connie> > > > ____________ _________ _________ _________ _________ _________ _____________ __> Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.> http://sims. />

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

Hello Jen,

My name is Janet and I live in the Sacramento area of Ca. All my kids are

grown. In fact

next year all 4 of them will be in their 40's. But, Honey, trust me, it seems

like only a blink

away that mine were the ages of yours. I'm so sorry to hear of their health

problems. They

are so young to be plagued by such pain. I am a good listener. Even though I

am no experiencing

similar problems, I am a mother, grandmother and a pretty good great aunt to 3

fantastic little boys.

Not long after I moved to California, I started doing my family tree and found

that some of my

ancestors were Pennsylvania Dutch, so I wonder what part of Pa. you live in.

You may email

me direct if you need someone to talk to anytime. I spend a lot of time alone,

so I would welcome

the diversion. God be with you and your children.

Janet in Ca

[Guest guest]

Hi Jen,

My name is Laurie, from upstate NY. My brother lives in Lansdale Pa.

I have PsA and P and Fibromyalgia (and on and on). I used to work in a

behavioral Group Home for NYS and several of my " kids " had Autism. Of course

they were older adults but they were still " my kids " . So if you have a question

or just want to talk about you daughter.....I KNOW you have your hands full!!

It really sounds like you should get both of your kids to a GOOD

Rheumatologist if you haven't already. Is there any Arthritis that runs in

either family?

Welcome to the group and please ask questions. As they say, we're all in this

together. So if you need an ear.....

My best,

Laurie in NY

[Guest guest]

I was wondering if anyone could tell me about their experience with the leukemia study. I would like to hear people's stories about whether or not they took part in it and how they made their decision. Now that we have made it through the induction stage and are moving on the consolidation I need to make a decision whether or not to stay on the study. I would appreciate anyone's thoughts on this. Thank you.

Connie Gliott

mom to 5

Re: [ ] new to group

Hi Connie,

I hope that is feeling better today. My son Tristan was diagnosed with pre B ALL in February of 1998 shortly after his 4th birthday. Treatment was hard for him (he was on POG 9605) and had lots of side effects. He completed treatment in October of 2000 and is almost 7 years off treatment!!! He is now 13 and doing well despite some struggles with long term damage from his leukemia treatment. He has actually been really healthy until this week when he was diagnosed with Graves disease (hyperthyroidism) .

How long is 's treatment - I know treatment for ALL is long but you will get there - there is light at the end of the tunnel. The beginning is really hard but it does get better (I remember a parent telling me this and I didn't believe them but it was true!) I'm glad this group is here for parents - especially those with newly diagnosed children.

with Blessings,

Thirza, Mum to Tristan 13 (DS, dx ALL 2-98) Abigail 6, Ella 3 and 10 months

On Aug 14, 2007, at 6:35 PM, Connie Gliott wrote:

Hi everyone,

I have a son with ds who was just diagnosed with leukemia. His name is and he will be five in September. I was hoping to talk to some other parents who are going through the same thing. We live in Loveland, Co and we have spent the last 5 days at Children's Hospital in Denver. He has ALL Leukemia. They started him on chemotherapy immediately and will be going home tomorrow for out patient treatment. I would love to hear other stories of other children. Thanks.

Connie

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.

Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

Connie, had AML and her treatment was over 6 months time period. I presume the study you mention is different because the treatment is different.Anyway, was part of a study. We hoped that by contributing it would help kids in the future. It did mean a few extra blood tests though. Not sure what 's study entails.Connie Gliott <conniegliott@...> wrote: I was wondering if anyone could tell me about their

experience with the leukemia study. I would like to hear people's stories about whether or not they took part in it and how they made their decision. Now that we have made it through the induction stage and are moving on the consolidation I need to make a decision whether or not to stay on the study. I would appreciate anyone's thoughts on this. Thank you. Connie Gliott mom to 5 Re: [ ] new to group Hi Connie, I

hope that is feeling better today. My son Tristan was diagnosed with pre B ALL in February of 1998 shortly after his 4th birthday. Treatment was hard for him (he was on POG 9605) and had lots of side effects. He completed treatment in October of 2000 and is almost 7 years off treatment!!! He is now 13 and doing well despite some struggles with long term damage from his leukemia treatment. He has actually been really healthy until this week when he was diagnosed with Graves disease (hyperthyroidism) . How long is 's treatment - I know treatment for ALL is long but you will get there - there is light at the end of the tunnel. The beginning is really hard but it does get better (I remember a parent telling me this and I didn't believe them but it was true!) I'm glad this group is here for parents - especially those with newly diagnosed children.

with Blessings, Thirza, Mum to Tristan 13 (DS, dx ALL 2-98) Abigail 6, Ella 3 and 10 months On Aug 14, 2007, at 6:35 PM, Connie Gliott wrote: Hi everyone, I have a son with ds who was just diagnosed with leukemia. His name is and he will be five in September. I was hoping to talk to some other parents who are going through the same thing. We live in Loveland, Co and we have spent the last 5 days at Children's Hospital in Denver. He has ALL Leukemia. They started him on chemotherapy immediately and will be going home tomorrow for out patient treatment. I would love to hear other stories of other children. Thanks. Connie Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

when. Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

had high risk preB ALL and no study was open for him. He was treated "according to" an old study, 1961c. We were free to use it when it worked and variate when it didn't. If he had been on study, he would have gone off due to his inability to tolerate IV methotrexate. That's one thing to know. The study can be very good to participate in, and if your child is not doing well on it, you can request he go off protocol at any time; and if you have a good onc, he'll take him off protocol if it's best for him. I wouldn't be afraid to enter a study if one seemed appropriate. 's treatment was 3.5 long, hard years. He's been OT 6 months. Good luck!

Beth, mom to , age 7, diagnosed 10-29-03 with highrisk preB ALL, treated according to protocol 1961c, off treatment March 9, 2007!www.caringbridge.org/in/kylefacts

Re: [ ] new to group

Hi Connie,

I hope that is feeling better today. My son Tristan was diagnosed with pre B ALL in February of 1998 shortly after his 4th birthday. Treatment was hard for him (he was on POG 9605) and had lots of side effects. He completed treatment in October of 2000 and is almost 7 years off treatment!!! He is now 13 and doing well despite some struggles with long term damage from his leukemia treatment. He has actually been really healthy until this week when he was diagnosed with Graves disease (hyperthyroidism) .

How long is 's treatment - I know treatment for ALL is long but you will get there - there is light at the end of the tunnel. The beginning is really hard but it does get better (I remember a parent telling me this and I didn't believe them but it was true!) I'm glad this group is here for parents - especially those with newly diagnosed children.

with Blessings,

Thirza, Mum to Tristan 13 (DS, dx ALL 2-98) Abigail 6, Ella 3 and 10 months

On Aug 14, 2007, at 6:35 PM, Connie Gliott wrote:

Hi everyone,

I have a son with ds who was just diagnosed with leukemia. His name is and he will be five in September. I was hoping to talk to some other parents who are going through the same thing. We live in Loveland, Co and we have spent the last 5 days at Children's Hospital in Denver. He has ALL Leukemia. They started him on chemotherapy immediately and will be going home tomorrow for out patient treatment. I would love to hear other stories of other children. Thanks.

Connie

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.

Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

Don't forget to describe your symptoms in full detail. I'm presuming symptoms

are what led you to be diagnosed to begin with. Most have symptoms, some don't.

I'd like to know what prompted you to seek analysis initially.

romrelllj <romrelllj@...> wrote: I have been reading the posts

for a month or more I have alot of

question and need some help. I will post my by blood work as soon as

I get it in the next day or two and hopefuly someone can give me some

advise. This is my first post ever

---------------------------------

Take the Internet to Go: Go puts the Internet in your pocket: mail, news,

photos & more.

[Guest guest]

On Wed, 10 Oct 2007 03:14:19 -0000, you wrote:

>I have been reading the posts for a month or more I have alot of

>question and need some help. I will post my by blood work as soon as

>I get it in the next day or two and hopefuly someone can give me some

>advise. This is my first post ever

Welcome!

[Guest guest]

Welcome.

romrelllj <romrelllj@...> wrote: I have been reading the posts

for a month or more I have alot of

question and need some help. I will post my by blood work as soon as

I get it in the next day or two and hopefuly someone can give me some

advise. This is my first post ever

Co-Moderator " Don't believe anything you hear and only half of what you see. "

Phil

---------------------------------

Don't let your dream ride pass you by. Make it a reality with Autos.

[Guest guest]

I have been reading the

posts for a month or more I have alot of

> question and need some help. I will post my by blood work as soon

as

> I get it in the next day or two and hopefuly someone can give me

some

> advise. This is my first post ever

>

> First off thanks for taking the time to help me. his may be long

but hopefully it will give you what you need. I went to my Dr Nov

2005 for a check up. Had high blood pressure and cholesterol. went

on Crestor and blood pressure medication after 2nd visit he checked

my Testoterone had some ED and no energy

Nov 2005

Test total 338

Free 34.6

Test % 1.02

He put me on Adrogel patch I did that for a few months and was

rechecked. MARCH 2006

Test Total 588

Free 105.9

Test,% 1.80

PSA 0.6

Went back for follow up Nov 2006

Test Total 226

Free 44.1

Test % 1.66

He then put me on Androgel which I liked better Four pumps one day

and 6 pumps the next day. I had some concerns of my testicals

shrinking that is why he had me alterernate the gel. My next visit

was April 2007

Test total 888

Test Free 160.8

Test % 330.6

My Dr then moved so I went to a Uro because my testical where

shinking more. He put me on 8 Pumps a day went back on

Aug 2007

Test total was 1114.32 nurse was surprized as to how high it was

Dr said it was ok and to keep doing 8 pumps a day I expressed my

concern that my testical were all but gone and he told me that they

are for looks any way and to to worry. I started to look and found

this sight. I then went to a Endo Dr and told him my concerns and

asked if he would do HCG for me we then waited to see if my

insurance would pay which they did. I got 12 bottles of 10,000

usp. I went to my Dr to show me how to use it he said to inject 400

each day and not to take any more androgel. I showed him Dr s

Recipe and he said sounds good and what could it hurt. So for 2

weeks I have been doing 6 pumps a day and every 3rd day I INJECT 250

HCG. Before my injection I got more boold work done and here are the

stats

I really had to push to get these tests.

Estradiol 28 Range 18 to 67

Estrone 62 Less than 65 pg/ml

Estrogen 90 Ref range 29 to 127

FSH 0.4 Range 1.0 8.0

HGB 16.0

MCHC 33.7

IGF1 157 Range 66 296

LH 0.5

Prolactin 8.1

PSA 0.8

Testosterone 626 Range 350 - 890

Sex Hormone Binding Globulin 28 Range 13 - 71

Test Free 129.3 Range 50 - 210

Test % 2.1 Range 1.6 - 2.9

Test Bioavail 375.9 Range 130.5 - 681.7

ALB 4.7 Range 3.3 - 4.8

I don't know what this all means every one seems to know what they

are talking about here and I am lost as to what is right. I still

fill slugish and no energy and my balls are almost gone. I need some

help I am 50 I Do have a good sex drive wood is ok but could be

better. some morning wood and some times not at all Orgasims not

very intense any more. Sorry for the length I just need some

advise. I feel like I am telling the DR what to do and I am paying

him for my own advise. Please shed some light for me words cannot

express my thanks for listening and hopefully helping me This is my

first post ever so excuse my spelling or gramer. Just need someone

to talk to me and help me. THANKS.

>

>

>

>

>

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

> Take the Internet to Go: Go puts the Internet in your

pocket: mail, news, photos & more.

>

>

[Guest guest]

I have a 10 year old son that has just been diagnosed with PA this

past summer. He takes 500mg of naproxen/day. Grant has had severe

scalp psoriasis since he was 2 on & off. What led us to the

arthritis diagnosis was a diagnosis of uveitis. This is an

inflammation of the eye. Grants was just discovered last year when

on a routine eye exam, damage was found in his eye showing that it

had been inflamed at one time. He has had an inflammation since

then and we are still trying to get rid of it. I urge anyone with

children and pa or jra to have their eyes checked regularly.

Children typically have no symptoms (unlike adults who have a red eye

and a lot of pain) when there is eye inflammation. Right now we are

just waiting out the 12 week period being on naproxen to see if it

will take away the swelling in his joints (knee, ankle, and

finger). We are at 9 weeks and there is still visible swelling in

his ankle. We have been very lucky that Grant does not have much

pain with the arthritis.

[Guest guest]

, welcome to our " family. " You will find this a great place

for info and support. We have several moms here who have children

with PA also.

best wishes to you and Grant,

sherry z

>

> I have a 10 year old son that has just been diagnosed with PA this

> past summer.

[Guest guest]

FYI --

It is my understanding that Naproxen does not reduce swelling. I was on a

high dosage for more than a year -- and my swelling got steadily worse.

My doctor told me that it helps pain and can decrease inflammation, but it

can make swelling worse. They took me off of it and my swelling slowly

improved.

Patty

[Guest guest]

My rheumatologist called it " fibromyalgia fog " so the confusion kind of goes

with the territory. I read that bumps under the skin are more likely an

indication of rheumatoid arthritis but I have PA and have one little bump on a

tendon right in the middle of my hand and I have PA. Doesn't really hurt

though. Only a good rheumatologist will be able to tell you for sure but sounds

like you're between a rock and a hard place right now. I hope things get better

soon.

I have not had a doctor ask me to pay in advance for years and years, except

occasionally the co-pay on the way out of the office. Doesn't sound like a

doctor I'd like!

Joanna Hoelscher

630-833-7361

[Guest guest]

Welcome, LaNay. Do you have psoriasis? Psoriasis along with joint

pain strongly suggests psoriatic arthritis. Since your doctor was

trying to refer you to a rheumatologist, he probably suspected either

psoriatic arthritis or rheumatoid arthritis. The treatments tend to

be the same for either of those.

By the way, psoriatic arthritis in the wrist is sometimes

misdiagnosed as carpal tunnel syndrome.

best wishes,

sherry z

[Guest guest]

Hi, thanks for the reply. I didn't realize that it could be mis diagnosed as

carpal tunnel. even when you have a test done? the Dr. said he could see how bad

it was when he did the surgery. i just hope I get some relief soon its burning

and hurting very bad! thankx, lanay

[Guest guest]

Hi, I am sorry to hear about your situation. your right the stress may

cause you some problems right now. I no it bothers me more when I have

extra stress which is a everyday thing with me. I am bipolar as well so

hell life is interesting everyday! take care email me if ya ever wanna

chat. hugs, lanay

[Guest guest]

Hi, thank-you for your reply. I am going to the dr next week and I hope

I get some relief it seems to be getting worse and the burning is as

well now its giving out when I am holding my grandson . . . 25lbs lol. it's

scary thats for sure. I will keep ya posted. thankx, lanay

[Guest guest]

I ended up getting tested for carpal tunnel because of my fingers

constantly being in pain and going numb is that a side affect of PA?? I

really don't know all the info on it cause I am newly diagnosed as

well, but is it true it is an autoimmune disease?? today is not a good

day for me and I just want to cry.

[Guest guest]

This happened to me about 2 months ago. Started wearing brace to work on my left

hand. going numb, tingling and the PAIN! Left work to go to emergency room. they

sent me to family doc. They didn't know and wanted me to go to xray and do

therapy. I called rheumy's office. should have done it first thing. he upped my

rx of sulfasalzine and put me on prednisone. I told him I thought carpel tunnel

and that is why I did not call him. He told me to always call him first because

he can diagnose a flair or carpal tunnel. long story short. Call your RHEUMY.

This is PA usually and the meds did solve the problem. I was told that the

disease is still active in my hands. I'm now back to normal, off the prednisone

and not wearing the brace.......casey

tblb1995 <tblb1995@...> wrote:

I ended up getting tested for carpal tunnel because of my fingers

constantly being in pain and going numb is that a side affect of PA?? I

really don't know all the info on it cause I am newly diagnosed as

well, but is it true it is an autoimmune disease?? today is not a good

day for me and I just want to cry.

__________________________________________________

[Guest guest]

Ann,

I would never choose chemotherapy and radiation.

#1 They don't work.

#2 They will make a healthy person sick.

#3 They kill many people.

#4 The science behind chemotherapy and radiation therapy is false.

#5 " They " just want your $$$ but blatantly declare there is no cure for

cancer.

There are cures for cancer. The answer is raw food. Real human food is

raw food.

I just made my own cure protocol for cancer.

http://www.curemanual.com/cure-for-all-diseases-manual/

I cure my relatives and friends just for fun.

This was my christmas gift to my friends, I printed it and bound it as a

book. It is out of print:

Health and Survival in the 21st Century by Ross Horne is available

online at

http://www.soilandhealth.org/02/0201hyglibcat/020122horne.21stcentury/020122toc.\

html

Please read the entire book from start to finish.

It is very short.

From there you will know what to do.

Regards,

Edwin

elizabethmalabre wrote:

>

> Hi, My mother was diagnosed yesterday with adenocarcinoma of the lung

> that has metasticized and gone to her right hip bone. Prior to last

> week I would have called her the picture of health. She is 76 and very

> active. I don't know what to expect. She is choosing radiation and

> chemotherapy. She meets with her oncologist monday. I would like to

> support her in the best way possible and bring as much useful

> information as I can to the table. I am grateful for anything anyone

> can provide.

>

> Thanks

>

> Ann Malabre

> eamalabr@... <mailto:eamalabr%40earthlink.net>

>

>