Re: (unknown)

[Guest guest]

yeh well i just had my DISH (damn it, I'm still here)friend here

for the weekend and she told me about it. today she is doing the

harbour bridge climb,not bad for a stage 4, 9/9 aggressive Brca1, with

hardly any disease.

i think it looks very clean, and would have great

application with Nf2 tumors. no scars/surgery, not going through

other tissue, etc. just cooking/killing tumro. of course , I bet

it is not here..

brian, will get back to you about

the other. going shopping .

and Not that I know of

- but that's interesting - microwave the darn thing from the

inside..

........

(unknown)

did someone post about radiofrequency ablation? where they

just

insert a needle and kill the tumor with heat?

[Guest guest]

,

If ya ever decide to get an abi (when you go total deaf) radiation can

effect the abi working for you. If the tumor in your spine is not in the

cord itself, you should do fine.

Texas

[Guest guest]

Welcome to the Crew, ! Your sn reminds me of Scooby snacks... and my

nephews love Scooby Doo, so I decided to respond... and that's about how my

brain works...

It's great to hear you weathered your first surgery this March so

well--especially with such a large tumor! My first one went really well

too... also a large tumor. The other three brain surgeries since them have

not had such smooth followings. A couple q's on your head tumors (and sorry

if I missed you talking more about these before--it's been hard to keep up

with everyone):

Have you been monitoring the growth of these? Are you experiencing symptoms

of them like headaches, dizziness, vomiting, vision problems? Sometimes

something has to be done because of size... and sometimes people at varying

places in their lives decide to do something to control growth to minimize

damage, but risks come with treatment, too, and there is nothing worse than

watching someone do something for the sake of doing something and coming out

in worse shape. Best thing is certainly to follow your gut... and use all

the information from actual experiences you can, but since this is so early

in your time after being diagnosed, I've noticed there's a tendency right

away to think we can get all the tumors out or control them, and in more

instances than not, the best we can hope for is managing our lives by

minimizing damage while also maximizing our strength and the options that

will be available to us when we have no choice but to do something.

Hang on a minute with the tumor on your spine... How much experience does

your surgeon have with NF2 spinal tumors? Are you already having problems

from it? I almost had surgery for my spinal tumors ten years ago when I was

15 based on the advice of an inexperienced dr. In talking with an

experienced dr., the risks were far, far greater than I was first told. If I

had had the spinal surgery then, my strength in handling the life-threatening

brain surgeries that I've had would have been compromised and I doubt I'd be

here today... Anyhow, I think it's a good idea to take care of what really

needs taking care of (based on what's affecting your daily life most and the

advice of an NF2 experienced and knowledgeable neurosurgeon). Everybody's

different with the specifics of what problems flare up the most, but I think

there are some basic strategies that help us so that we can choose what is

best for us and no matter what the outcome, we will be in the right frame of

mind to face it. There is nothing worse with feeling deceived by someone who

we basically hand our lives to when we decide to go forward with surgery.

Even though our surgeries become sort of routine (which is pretty crazy when

you stop to think of it), that does not diminish their seriousness and the

implications they can have for us and the people who love us. I think first

you need to see how " active " your NF2 actually is... give yourself a little

time and see how much room you have for being more pro-active in getting

tumors out. A lot of times, we get one out just to turn around and discover

3 more have replaced it (not always, though!) This is a life-time deal, so

get comfortable with these great folks, enjoy the highs, and always remember

to take a step back before making a major decision. I think the hardest

thing is living in the present, yet keeping an eye up the path, too. It

definitely helps to find a neurosurgeon who has tons of experience with NF2,

has an appreciation for your life outside his office, and who listens to what

you have to say about your condition and what you're willing to risk and what

you want.

If you don't get as many responses as you'd like, there's also the option of

searching the list archives from the yahoogroups website... or post another

msg.

Welcome and I hope all goes well. Hugs,

snacks3400 wrote:

> Hello all,

>

> I have 3 tumors which need to removed sooner than later. 2 of which

> are an's and one on my spine. The an's consist of a large 1 inch

> tumor and a smaller 2 millimeter tumor. The smaller tumor I have

> decided to radiate. The larger tumor I cannot decide whether to

> remove or radiate. This ear has been deaf now for 13 years. What are

> your experiences?

>

> Now to the spine.

>

> The tumor on my spine really leaves me one choice, it has to go,

> sooner than later. Currently it is causing me no trouble-------. My

> surgeon and I have talked at length and he is very confident it can

> be removed without causing any other problems. What are your

> experiences with this kind of surgery?

>

> I am a new member to this group and from the looks of it a great

> support/resource to all.

>

> Just a quick note about me

>

> I was diagnosed with NF2 on February 28 2002 and had a tennis ball

> sized tumor removed from my head on March 1, and have recovered with

> minimal side effects. Now on to the next one!!!!!!

>

> Thanks

>

[Guest guest]

I had a tumour removed in upper neck and my spine reamed out as far down as

the middle of my shoulders

I had another surgery on my spine and the surgeon did something to relieve a

lot of the pressure

I have had surgery on my leg to remove tumour and on my arm to remove some

Need a few more surgeries in the future

The best advice is talk to doctor

Have MRI has often as he feels is necessary

if they are slow growing it may be only once a year

if fast may be three or four a year

keep a medical journal or sometype of journal

it is important for you to know what is happening and people, and I mean

everyone, tend to forget things sometimes

so a journal is important

Randy

(unknown)

> Hello all,

>

> I have 3 tumors which need to removed sooner than later. 2 of which

> are an's and one on my spine. The an's consist of a large 1 inch

> tumor and a smaller 2 millimeter tumor. The smaller tumor I have

> decided to radiate. The larger tumor I cannot decide whether to

> remove or radiate. This ear has been deaf now for 13 years. What are

> your experiences?

>

> Now to the spine.

>

> The tumor on my spine really leaves me one choice, it has to go,

> sooner than later. Currently it is causing me no trouble-------. My

> surgeon and I have talked at length and he is very confident it can

> be removed without causing any other problems. What are your

> experiences with this kind of surgery?

>

> I am a new member to this group and from the looks of it a great

> support/resource to all.

>

> Just a quick note about me

>

> I was diagnosed with NF2 on February 28 2002 and had a tennis ball

> sized tumor removed from my head on March 1, and have recovered with

> minimal side effects. Now on to the next one!!!!!!

>

> Thanks

>

>

>

>

>

>

[Guest guest]

I got an email from her the other day(oops still gotta reply)I guess all is well.She just isn't on crew right now.She said sahes waiting till she gets around to buying an anti virus program for her computer.

Jimmy

(unknown)

I have been gone and i see in some of the mail that was posted nothing from poetgirl, does anyone out there know what happen to here? I always enjoyed her post. sandy

[Guest guest]

You forgot 'WONKA BOB ' ! What was he going to do again ? Something about

Willy Wonka wasn't it ? Spread joy to children or something like that ? His

( Bobs ) heart was always in the right place, even though he gave some of

us stomach ulcers from time to time, he became a much loved part of the

crew. I often wondered just how many other sides to Bob there were that we

never knew .

I wonder if the other LIST groups he was part of know he has passed away ?

:-(

RIP BOB

m

----- Original Message -----

From: " Rosemary Lee "

> I was very saddened to hear of Bob's passing. I read it early this

> morning, carried it with me all day. i really enjoyed his thinking.

> he was like a breath of something new to the crew in his postings and

> I loved the way he came back with love to each and every posting.

> Bob the father, Bob the Wholeone, Bob our brother. It does seem that

> he was extraordinarily blessed with ....and i am wondering

> something. Jimmy can we send a card to ? I know this is not the

> convention, but somehow think it is appropriate, considering the fact

> that, for a while there, before this last op, this really did become

> his medium. am sure his cells are out there in cyberspace.

>

>

[Guest guest]

Good Idea....

Carol

(unknown)

Jimmy can we send a card to ? I know this is not the

> convention, but somehow think it is appropriate, considering the fact

> that, for a while there, before this last op, this really did become

> his medium. am sure his cells are out there in cyberspace.

>

>

[Guest guest]

Hi !

I get spasms in my side, legs and arms. Hurts like heck. My new

psychiatrist is putting me on a pain program with some new meds and

acupunture. I will let you know if it works.

Carol

(unknown)

> Hi Crew,

> Its been awhile since Ive been here. Hope you are all well. Has

> anyone heard of taking steroids to reduce swelling in the spinal

> column for tumors in the spinal cord? Also, my hubby is having many

> muscle spasms which while they are happening causes him not to be

> able to lift his arms and he has terrible pain in the neck? Anybody

> on anything that works? He just tried ultracet for pain and it seems

> to make him worse. Any help is appreciated.....s wife,

>

>

>

>

[Guest guest]

I have muscle spasms often. I also have terrible pain in my neck. I have not

ever taken any steroids to reduce swelling in the spinal column for tumours

in the spinal cord. Having these spasms causes some problems but I do my

best to work through them. I do not take anything for anything. Pills will

destroy your innards so I do not take any pain killers or any type of

medicine like that. I take one a day vitamins and just try to work through

each day. When does have his last MRI? The problem may be at the brain

stem. My problem is that I have a regrowth and I have two tumours on the

outside pushing to get in and one tumour on the inside pushing to get out. I

cannot walk across a room carrying a coffee without spilling it. I must

always be careful of anything I do because I do not know when or where

spasms will strike. Sneezing is one of the most painful things to do. The

only advice I can give is research, research, research and ask lots of

questions. Personally I had to learn to cope but I do not want medicine to

influence my day to day activities. If there is a cure I will take the

medicine but so far no cure so I learn to cope on my own. You can talk to me

about it anytime, or .

Randy

[Guest guest]

Carol ,

Hi even though its my son that has NF I'd be interested in your meds

and what your dr says and where you go for acupuncture as I have a back

problem and get muscle sp[asms frequently very (bad ones) smile so if you

could let me know my e-mail is ljr@...

(unknown)

>

>

> > Hi Crew,

> > Its been awhile since Ive been here. Hope you are all well. Has

> > anyone heard of taking steroids to reduce swelling in the spinal

> > column for tumors in the spinal cord? Also, my hubby is having many

> > muscle spasms which while they are happening causes him not to be

> > able to lift his arms and he has terrible pain in the neck? Anybody

> > on anything that works? He just tried ultracet for pain and it seems

> > to make him worse. Any help is appreciated.....s wife,

> >

> >

> >

> >

[Guest guest]

Not that I know of - but that's interesting - microwave the darn thing from the inside..

........

(unknown)

did someone post about radiofrequency ablation? where they just insert a needle and kill the tumor with heat?

[Guest guest]

Wow, that sounds too good to be true. marie

(unknown)

did someone post about radiofrequency ablation? where they just insert a needle and kill the tumor with heat?

[Guest guest]

Go easy on the old boys Credit Card!!!!!!!!

....

(unknown)

did someone post about radiofrequency ablation? where they justinsert a needle and kill the tumor with heat?

[Guest guest]

HI BRIAN,

I NEED SOME HELP FROM YOU AUSSIE CREW MEMBERS

NEXT MONTH I AM SPEAKING AT OUT CHURCH WOMEN'S GROUP ABOUT MY TRIP TO OZ. WE WOULD LIKE TO SERVE SOME FOOD THAT IS NATIVE TO OZ OR WHAT MOST OF YOU EAT

ALL I COULD THINK OF WAS THE PUMPKIN SOUP

COCONUTS TIMTAMS BUT I SURE CAN'T AFFORD TIM TAMS SHIPPING IS OUT OF SIGHT ON THEM

ANY HELP WILL BE GREATLY APPRECIATED

ANY RECIPES FOR THE SOUP???? AND I HOPE YOU CAN PUT IT IN CUPS AND SPOON MEASURES

THANKS

CATHERINE

(unknown)

did someone post about radiofrequency ablation? where they justinsert a needle and kill the tumor with heat?

[Guest guest]

how about serving up Marcus a-la-creme'......LOL!!!

Re: (unknown)

Pavalova is another thing - Australians says that its theirs and New Zealand says it theirs. Who ever it is, it is a marshmallow dessert that is sliced, usually with whipped cream and its yummy.

[Guest guest]

Talking about Australian dishes ... You know, the delicious kind ......

Re: (unknown)

Hey whats all this talk ?

M for Marcus

[Guest guest]

Subject: (UNKNOWN)

WELLLLL, how in the world did we miss the meat pies? Marnie will you make us

some when you get your pie maker.....please....pretty please....

Sheryn , on her knees begging...

________________________

> SORRY CATHERINE YOU WROTE.....

> MAY I HAVE THE RECIPE PLEASE MARNIE?

> I DON'T HAVE MAY PIE MAKER YET!!!!

> SEE IF ONE OF THOSE AUZZIES CAN SEND IN SOME MEAT PIE RECIPES. I TASTED

> BOTH REGULAR AND SPICY!

> THEY WERE OUT OF THIS WORLD!

> MARINE

>

>

>

[Guest guest]

Hi Dawn,

Just to let you know, you're not the only one who gets the are-you-pregnant?

comments - I get it all the time. Apparently, I'm carrying around a soccer

ball in my uterus. But hey if I can't laugh about it...well, I'm not about to

cry! But I guess these people mean well but they sure piss me off! I guess we

get the comments because our body size doesn't match the size of our bellies.

If you get a chance, strangle the next person who asks you that, for both of

us!

Rhonda

[Guest guest]

To celestialstars:

When I was suffering with fibroids last year, my husband started to say to me

that I was gaining weight in my stomach and I had a " pot belly " . My clothes

did get tight and I gained about 10 lbs. I wasn't able to exercise since I

was bleeding so badly so often and my appetite was horrible. I would crave the

weirdest things and a lot of times give in to the cravings. I was also on

some heavy birth control pills to control bleeding and when I researched them

recently I found out they had male hormones in them. Great! I've had a UAE 7

mos ago and my uterus has shrunk but I am not able to lose the weight. I'm not

overweight, but have always been really thin. I was and still am upset when

my husband says negative comments to me about my weight/body. I just try to

ignore him. I know how you feel when someone told you that you looked

pregnant. Try not to let it get you down and ruin your day. You have a medical

condition and that person who said that was ignorant. That's what I'd chalk it

up

to. Ignorance. Forget it and try to have a good rest of the day.

[Guest guest]

--- MMECURIE@... wrote:

> Hi Dawn,

>

> Just to let you know, you're not the only one who

> gets the are-you-pregnant?

> comments - I get it all the time. Apparently, I'm

> carrying around a soccer

> ball in my uterus. But hey if I can't laugh about

> it...well, I'm not about to

> cry! But I guess these people mean well but they

> sure piss me off! I guess we

> get the comments because our body size doesn't match

> the size of our bellies.

> If you get a chance, strangle the next person who

> asks you that, for both of

> us!

>

> Rhonda

That is funny! I noticed how some people eyes go to

my stomach first. And I think what are you looking at.

Right now I hve two fibroids in my uterus in the 6-7

Cm range present. In addition there is a 4.7x2.7 cm

left ovarian cyst present with an associated smaller

cyst in the range of 1-2 cm as well. I don't have my

right ovary because of a oophorectomy in 1997 while

living in Virginia. That bill is on my credit file.

[Guest guest]

Hello Dawn - greetings from Canada ! I recently joined this group as I was

looking for information concerning my options regarding fibroids. I had day

surgery last January to remove one of the fibroids, but it looks like I might

need additional surgery due to heavy bleeding and anemia. Fortunately, I have

never been asked if I was pregnant, but it must have been very discouraging for

you, considering the comment you made. I just wanted to pass on the thought that

you should concentrate on all the wonderful aspects of your life (family,

friends, activities, etc.) and, hopefully, that will make you feel better.

Good-bye for now,

Ann

(unknown)

Well someone else just asked me if I was pregnant. There goes the

rest of the day. God, why can't I just die?

[Guest guest]

Dear Rhonda,

Unfortunately I weigh about 115 pounds so I guess it looks rather

odd. I want someone to say this to me outside of work so I can say,

well, if I am, it'll be seven years old when it's born! I bet they

wouldn't have anything to say to that.

Dawn

> Hi Dawn,

>

> Just to let you know, you're not the only one who gets the are-you-

pregnant?

> comments - I get it all the time. Apparently, I'm carrying around a

soccer

> ball in my uterus. But hey if I can't laugh about it...well, I'm

not about to

> cry! But I guess these people mean well but they sure piss me

off! I guess we

> get the comments because our body size doesn't match the size of

our bellies.

> If you get a chance, strangle the next person who asks you that,

for both of

> us!

>

> Rhonda

[Guest guest]

Dear ,

I'm sorry your husband says stuff like that to you. That sucks. We

can't all look like Britney Spears. I don't think it's normal to

have a totally flat stomach, to tell you the truth.

Love,

Dawn

> To celestialstars:

>

> When I was suffering with fibroids last year, my husband started to

say to me

> that I was gaining weight in my stomach and I had a " pot belly " .

My clothes

> did get tight and I gained about 10 lbs. I wasn't able to exercise

since I

> was bleeding so badly so often and my appetite was horrible. I

would crave the

> weirdest things and a lot of times give in to the cravings. I was

also on

> some heavy birth control pills to control bleeding and when I

researched them

> recently I found out they had male hormones in them. Great! I've

had a UAE 7

> mos ago and my uterus has shrunk but I am not able to lose the

weight. I'm not

> overweight, but have always been really thin. I was and still am

upset when

> my husband says negative comments to me about my weight/body. I

just try to

> ignore him. I know how you feel when someone told you that you

looked

> pregnant. Try not to let it get you down and ruin your day. You

have a medical

> condition and that person who said that was ignorant. That's what

I'd chalk it up

> to. Ignorance. Forget it and try to have a good rest of the day.

>

>

>

>

>

[Guest guest]

er...now I know I am going to be totally attacked for saying this

but....the recent and state of the art research on the dna of the human

race seems to suggest at some juncture that we are all black! hahaha.

troublemaker gg. ;-)!

aztek002003 wrote:

>On the subject of ethnicity....

>

>We're here to share information and offer support to each other.

>One concern some ladies have is whether not enough is being

>done about fibroids and fibroid patients for discriminatory

>reasons, because many black women have the problem. If this

>is a concern for some, then discussing it (appropriately) is a

>good idea. If there are any bad situations happening then we can

>air them. Personally think that it's a matter of women and

>healthcare, rather than a race issue; but that's not to deny that

>sometimes people are going to encounter prejudice from

>individuals or certain places. That's why I posted to say I am

>WASP and I've got fibroids too. A lot of women who have

>reported problems with their doctors and insurance etc. are, I'll

>bet, often white.

>

>I agree that polls and too many personal ID details probably

>won't help. There may be interesting side issues, such as why

>some countries have more or less cases of certain illnesses

>etc..

>

>

>

>

>

>

>