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Louisa

First of all don't apologise for moaning on this group. We can all emphathise with you and share your concern, you a helped yourself by writing it down.

The beast can no longer be described as an old man's disease. I was diagnosed at 50 and have heard of men in their early 40s who have the disease. My dad was in his mid 80s when he was diagnosed.

To get down to practicalities there is a new phase in the progress of the disease. From now on those near dad will have to be aware of his needs for pain medication and the need for treatment (often they use radiation) for the bone metasteses. There should be no need for him to be in pain.

The side effects of drugs vary from person to person, but there are many people who have had similar side effects to your dad. It would be good to know what he is on and we can try and find out if there are ways to limit the side efects.

How right you are that it affects those who love the patient. I sometimes think that they suffer emotionally more than the patient as they feel so much for them.

Don't give up writing to us. There may be many miles between us but we are only an e-mail away.

Best wishes

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Thankyou ..

Hugs Louisa

>From: " Metcalf"

>Reply-To: ProstateCancerSupport >To:

>Subject: RE: question >Date: Fri, 24 Oct 2003 23:39:34 +0100 > >Louisa > >First of all don't apologise for moaning on this group. We can all >emphathise with you and share your concern, you a helped yourself by writing >it down. > >The beast can no longer be described as an old man's disease. I was >diagnosed at 50 and have heard of men in their early 40s who have the >disease. My dad was in his mid 80s when he was diagnosed. > >To get down to practicalities there is a new phase in the progress of the >disease. From now on those near dad will have to be aware of his needs for >pain medication and the need for treatment (often they use radiation) for >the bone metasteses. There should be no need for him to be in pain. > >The side effects of drugs vary from person to person, but there are many >people who have had similar side effects to your dad. It would be good to >know what he is on and we can try and find out if there are ways to limit >the side efects. > >How right you are that it affects those who love the patient. I sometimes >think that they suffer emotionally more than the patient as they feel so >much for them. > >Don't give up writing to us. There may be many miles between us but we are >only an e-mail away. > >Best wishes > > > Surf the net and talk on the phone with Xtra Jetstream @ http://www.xtra.co.nz/jetstream

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Im in a trial study with Zometa I begin Thursday. I was just approved

for it after taking lots of tests. thats if I get the real stuff

instead of the placebo. Zometa is now approved only for patients where

the pc sbread to the bones. I feel taking it will be a preventative

for the spread but the drug company and the doctor cant make that a

claim since the study is just to contradict the effect of Luprin on

the bones.

>

> One thing that has just come to me Louisa.

>

> Is dad being given bisphosphonates eg Aredia. These assist bone

structure

> especially if Lupron or Zoledex is being used.

>

>

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Well done for volunteering.

It is eessential that these things are researched to help us and those who follow us.#

I too have heard of the liekly bisphosponates being used in treatment to help prevent progression.

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Hi Louisa,

Like you I am "out of the loop" at times, but often think about your family and how you are all coping. As said, you are only an e-mail away in reality and in our thoughts all the time.

I too share the feeling that it can hit the family as much as the individual .When it was my turn for a wake up call, it was my wife and 3 adult children who really got the shock and had to learn to live with it.

In thougth and prayer

Robin Ewart

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Any views or opinions expressed in this email are those of the author only.

None of the representatives of Zurich Advice Network Limited is authorised

to enter into any contracts on behalf of the company or any other Zurich company

by e-mail or any other means. All contracts to which Zurich is a party are

authorised and documented by other means.

Representative only of Zurich Advice Network Limited. Zurich Advice Network

Limited, regulated by the Financial Services Authority, represents only the

Zurich Financial Management Marketing Group for its life assurance, pensions and

investment products.

Thank you for reading this notice.

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Thanks Robin, praying in return :-)

Appreciate the letters, thoughts and prayers.

HugsLouisa

>From: "gba01193"

>Reply-To: ProstateCancerSupport >To:

>Subject: Re: question >Date: Mon, 27 Oct 2003 15:17:24 -0000 > >Hi Louisa, >Like you I am "out of the loop" at times, but often think about your family and how you are all coping. As said, you are only an e-mail away in reality and in our thoughts all the time. >I too share the feeling that it can hit the family as much as the individual .When it was my turn for a wake up call, it was my wife and 3 adult children who really got the shock and had to learn to live with it. >In thougth and prayer >Robin Ewart > > >********************************************************************************** > >The information contained in this message is confidential and may be >legally privileged. If you are not the intended recipient, please do not >read, copy or otherwise use it and do not disclose it to anyone else. >Please notify the sender of the delivery error and then delete the >message from your system. > >Any views or opinions expressed in this email are those of the author only. >None of the representatives of Zurich Advice Network Limited is authorised >to enter into any contracts on behalf of the company or any other Zurich company >by e-mail or any other means. All contracts to which Zurich is a party are authorised and documented by other means. > >Representative only of Zurich Advice Network Limited. Zurich Advice Network >Limited, regulated by the Financial Services Authority, represents only the >Zurich Financial Management Marketing Group for its life assurance, pensions and >investment products. > >Thank you for reading this notice. > Check out the Xtra gaming servers at www.xtramsn.co.nz/gaming !

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Hi Louisa

I read the groups messages most nights and I did notice that you had been missing for a while. Please don't think that you are moaning. We are all here to share and help each other.

has great knowledge of the various treatments and he offers sound judgement and willingly shares his thoughts.I have never met him but he has a great gift in understanding our problems

I have a friend who has recently been diagnosed with pc and at present he has no good news but he himself is so positive. His wife is finding things most stressful and at present I feel that she needs more support than her husband.

Please Louise don't feel sorry we all have families and we know how hard it is for you and them.

God bless.

Bob

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Thanks Bob. Appreciate that. :-)

I guess there are a lot of things to deal with. Its been odd, but I have always seen that my needs arent that great a deal, and that usually there is someone much worse off than me.. Maybe thats why I feel guilty for moaning a lot.. :-) anyways..thanks againHugsLouisa

>From: "Bob Elliott"

>Reply-To: ProstateCancerSupport >To:

>Subject: Re: question >Date: Mon, 27 Oct 2003 20:29:17 -0000 > >Hi Louisa >I read the groups messages most nights and I did notice that you had been missing for a while. Please don't think that you are moaning. We are all here to share and help each other. > has great knowledge of the various treatments and he offers sound judgement and willingly shares his thoughts.I have never met him but he has a great gift in understanding our problems >I have a friend who has recently been diagnosed with pc and at present he has no good news but he himself is so positive. His wife is finding things most stressful and at present I feel that she needs more support than her husband. >Please Louise don't feel sorry we all have families and we know how hard it is for you and them. >God bless. >Bob > > Gaming galore at XtraMSN Gaming!

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  • 2 years later...
Guest guest

Wow you mean they are admitting that they make mistakes??? The body

always knows what is wrong, given enough help and it will try and fix

things. I say this is the best answer whether or not you have a

diagnosis or have started taking any drugs.

cah819 wrote:

> >

> > In my case I owe it to a doctor in Boston who refused to give up

> until

> > he found out what was wrong with me. A doctor who actually did his

> > job, and to him I am extremely grateful. Not all doctors are bad.

> >

> > Just my experience,

> >

> >

>

>

> ~~~

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Guest guest

I drop things all the time and I fall alot, I use a cane sometimes

that helps if your doing things with one hand.

Amy

> >

> > > I have been seeing a pain management dr for lower

> > > back pain which they

> > > have given me cortisone shots. I now have numbness

> > > and weakness in

> > > legs and arms, and sometimes my words get mixed up

> > > when I talk or I

> > > cant think it takes me a while, and then there is

> > > pain all over my

> > > entire back. I lift things up with my arms and drop

> > > them all them

> > > time. my hands get twitches alot in them like if

> > > they are tremors.

> > > my vision is blurry more now, sometimes my hearing

> > > goes away. I find

> > > it hard to walk it feels like I am weak and cant

> > > climb stairs. I dont

> > > go to the dr til march 21, but when I looked up my

> > > symptoms it went to

> > > symptoms of MS each time in different search

> > > engines. There are 2

> > > people in my family that have MS, one is my male

> > > cousin on my granmas

> > > side, and also my uncle from my granmas side. I am

> > > a 31 year old

> > > female. Am I just stressed out or does anyone know

> > > if I should really

> > > get an MRI to see if I have MS? I am kind of scared

> > > to go to the dr

> > > about it, I already cancelled one appt.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

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  • 3 weeks later...
Guest guest

I've been reading up on all of the diets. For the most part, they all

seem to be very similar. I realize most of everyone on a diet also

takes supplements. Ie: primrose, flax seed, vit. d, b12.. list goes

on. So if anyone is taking these, what do you do, just take about 10

vitamins or so/day? Are you just taking them per the directions on

the back? And lastly, if I go vitamin shopping, there's going to be

so many brands available. Will it be okay for me to purchase generic?

Or are there " best " brands I should keep an eye out for? Thanks

everyone :> P.S. Why can't we eat beans? I love beans

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Guest guest

Hi!

May I suggest you take two tablets of Vital Force with each meal. It

will supply at least--and in many cases more than--the recommended daily

amounts of most of the known vitamins and minerals. For more information

about this product, visit

http://www.webspawner.com/users/vitalforce/index.html

In regard to the other supplements I take (like Ginkgo Biloba, Flax Seed

Oil, etc.), I buy most of mine at the local supermarket and take as

directed on the label. If the supermarket doesn't have what I need (like

evening primrose oil, vitamin D, etc.), I purchase it at my local health

food store.

Hope that helps!

With best wishes,

Dudley Delany

http://profiles.yahoo.com/dudley_delany

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Guest guest

hi tia!

this is from Prevention magazine, about supplement quality standards.

Home > Food and Nutrition > Vitamins and Supplements > General

Information on Vitamins and Supplements > Supplement Seals of Approval

Supplement Seals of Approval

Three independent organizations, not the government, monitor the

standards of supplements

by Gloria McVeigh

Related Articles

> 5 Nutrients You're Missing

> Best Vitamins for Women

> Vitamins for Your Vices

> Magnesium Chills Inflammation

Discussions

> Vitamins and Supplements

Related Topics

> General Information on Vitamins and Supplements

> Herbal Supplements

> Labeling

Contrary to what most people think, the FDA doesn't approve

supplements. These three groups do, although they only check that

what's on the label is what's in the product, that there are no

contaminants, and that production standards are upheld.

United States Pharmacopeia

Nonprofit; manufacturers pay a fee to be tested. After approval,

products are subject to random testing. About 40 products tested.

NSF International

Nonprofit; companies pay a fee for product testing. About 220 products

tested.

ConsumerLab.com

Private company; selects products for testing--about 1,000 so far;

summarizes evidence for health claims. Products are reanalyzed yearly.

View partial results on their Web site or pay $24 yearly for complete

data.

there is a lot of good info in the magazine... on many topics!

>

> I've been reading up on all of the diets. For the most part, they

all

> seem to be very similar. I realize most of everyone on a diet also

> takes supplements. Ie: primrose, flax seed, vit. d, b12.. list goes

> on. So if anyone is taking these, what do you do, just take about 10

> vitamins or so/day? Are you just taking them per the directions on

> the back? And lastly, if I go vitamin shopping, there's going to be

> so many brands available. Will it be okay for me to purchase

generic?

> Or are there " best " brands I should keep an eye out for? Thanks

> everyone :> P.S. Why can't we eat beans? I love beans

>

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Guest guest

also, in " the gold coast cure, " the authors recommend certain

brands. i try to purchase those brands, and follow the

recommendations in that book. i noticed an increase in my energy

after starting...

> >

> > I've been reading up on all of the diets. For the most part,

they

> all

> > seem to be very similar. I realize most of everyone on a diet

also

> > takes supplements. Ie: primrose, flax seed, vit. d, b12.. list

goes

> > on. So if anyone is taking these, what do you do, just take

about 10

> > vitamins or so/day? Are you just taking them per the directions

on

> > the back? And lastly, if I go vitamin shopping, there's going to

be

> > so many brands available. Will it be okay for me to purchase

> generic?

> > Or are there " best " brands I should keep an eye out for? Thanks

> > everyone :> P.S. Why can't we eat beans? I love beans

> >

>

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Guest guest

What is it about that diet do you think is good and why?

mbrovitz wrote: also, in " the gold coast cure, " the

authors recommend certain

brands. i try to purchase those brands, and follow the

recommendations in that book. i noticed an increase in my energy

after starting...

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

New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low

rates.

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Guest guest

> >

> > I've been reading up on all of the diets. For the most part,

they

> all

> > seem to be very similar. I realize most of everyone on a diet

also

> > takes supplements. Ie: primrose, flax seed, vit. d, b12.. list

goes

> > on. So if anyone is taking these, what do you do, just take

about 10

> > vitamins or so/day? Are you just taking them per the directions

on

> > the back? And lastly, if I go vitamin shopping, there's going

to be

> > so many brands available. Will it be okay for me to purchase

> generic?

> > Or are there " best " brands I should keep an eye out for? Thanks

> > everyone :> P.S. Why can't we eat beans? I love beans

> >

>

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Guest guest

i don't follow the diet (or any specific diet) to the letter. but

that book got me started thinking about diet and supplements having

an effect.... the supplements really helped increase my energy

level. i try to eat more fish, and have been shopping at whole foods

for a couple of months. on the advice of my acupuncturist, i have

basically eliminated gluten, dairy, red meat, coffee.... i'm eating

far less sugar (my biggest weakness!) and more vegetables. between

that, acupuncture and working out twice a week with a personal

trainer, plus glyconutrients, i'm hoping to see more changes.... i

travel from job to job, about 6 months at a time, and dread not

having a whole foods market at my next assignment!

also, in " the gold coast cure, " the

authors recommend certain

> brands. i try to purchase those brands, and follow the

> recommendations in that book. i noticed an increase in my energy

> after starting...

>

>

>

>

>

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

> New Yahoo! Messenger with Voice. Call regular phones from your PC

for low, low rates.

>

>

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Guest guest

I have the same opinon. Even though I don't eat perfect there were lots

of things I would not eat on that diet. IF you just keep in mind that

you want to keep it as close to its natural state as possible then its

pretty easy to figure out what to eat. At this point my body tells me

when I am going wrong. Tonight my daughter invited us out for Sushi.

Most of it was ok except all the white rice. Then I ordered some desert

which was coffee icecream, with chocolate and whipped cream. I have not

had icecream in years, but boy was it good. I figure if you only are bad

like this once in a blue moon then your body can deal with it. Its the

daily habits that will get you.

Pugh wrote:

> I don't think the Gold Coast Diet is good at all. The recipes include

> ingredients that aren't healthy for anyone, especially a person with

> MS. This is as much a bad plan as the Atkins diet! It isn't a

> drastic enough change from the SAD (standard American diet) to be any

> good. Some of the ingredients are dairy, sugar, synthetic foods and

> many processed foods with dangerous additives. You would be better

> off trying to include more whole, raw fruits and vegetables and fewer

> fats. No grains or legumes. The brands they mention are probably

> from companies promoting the diet. It's scary to me that they can

> make a claim that this diet benefits people with MS.

>

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Guest guest

Hi Tia,

Those things will definately have to go. Its hard to break the habit

because most likely you have candida and your body will crave these

things. Just start slow and adding supplements will help because some

sugar cravings are actually from lacking minerals such as magnesium. Its

hard for me to beleive at this point but I was eating that way also

several years ago. I have not had a soda in over 4 years and if I had to

drink one I would gag. Addictions are just that, addictions and once we

break them they have no hold on us. Be strong, your future health

depends on it.

Fahtia wrote:

> and God only knows I sure have a daily habit.. Cookies, candy, ice

> cream, pop, you name it, I eat it.

>

> "

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Guest guest

i agree, gina. i forgot that when i started on the supplements, my

cravings went away! i still eat sweets, very occasionally (like

special occasions), but not as regularly as before. i rarely have

any cravings...

michelle

>

> > and God only knows I sure have a daily habit.. Cookies, candy,

ice

> > cream, pop, you name it, I eat it.

> >

> > "

>

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Guest guest

That is good to know. I think also when we make a committment to our

health we become more conscious to our daily decisions and hopefully

make better ones. When we crave certain foods that are bad for us we

need to ask why??? Sometimes people sabbotage their own health on

purpose its a way to continue to get needed attention. For those people

they know what things are bad but will chose them anyway. GIna

mbrovitz wrote:

> i agree, gina. i forgot that when i started on the supplements, my

> cravings went away! i still eat sweets, very occasionally (like

> special occasions), but not as regularly as before. i rarely have

> any cravings...

>

> michelle

>

> -

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