Re: Postings from around the world, my basic info -- Maui Nanc

[Guest guest]

Dear ,

I just assumed (with envy) that you lived in Maui! What a surprise

to learn you're in Oregon. How did you earn the moniker " Maui

Nanc? "

Warm regards.

> >A side note--I absolutely loved the article posted about vitamin

D--I

> >would encourage all to read it if you haven't already. We should

all

> >be taking supplemental D, I think! I have read other articles

about

> >it being hailed as one of the more important vitamins for good

> >health, and for those of us who live in the rainy parts of the

world

> >where it is dark all winter and lots of bugs floating around for

us

> >to catch, it makes sense to take extra D to keep us healthy. I

wonder

> >what the ideal dosage of this would be?

>

>

> First, my brief introduction....I am an old timer (dx in 1998) and

a slow

> responder to the cml drugs (was on Gleevec for over 5 years, now

on Sprycel

> just over a year). I have been Dr. Druker's patient since Feb.

2000 (an

> early Gleevec trial).....so I have had the privilege and

opportunity to

> 'pick his brain' almost every 3 months for years! When I post,

usually in

> response to someone, that is the information that I pass

along.....plus the

> fact that I worked in the medical field as a physical therapist

with lots

> of doctor contact for about 30 years..........and that fact that I

have the

> opportunity in my community (Eugene, Oregon) to work with a

naturopath

> trained in oncology. I feel like I have the 'best of both

> worlds " .....western and alternative/complementary medicine and try

to share

> what I learn.

>

> Other than that I am single, just turned 60 and will be going on

my first

> cruise next month! It is a Disney Cruise with family.

>

> Now about Vit D......it was named a vitamin, but it actually acts

like a

> hormone....and it has to do with cell differentiation. My oncology

> naturopath has always felt it was important, and right from the

start we

> tested my vitamin D level, which was 'in the basement'.

>

> Normal range on testing used to be about 20-57 ng/mL. Natuopaths

have

> always felt this was too low.....mine wanted it to be 80-100 for a

cancer

> patient. Now the labs have increased this normal range to 32-80

ng/mL.

>

> I have been taking a daily supplement of 2000 iu of Vit D3 (it

needs to be

> D3 which is not what they have fortified milk and other products

> with).........but we do periodic testing for me. My lab results

for the

> Vitamin D, 25-Hydroxy test started at 9.4 and have only slowly

increased to

> 62.5 (over 2 years).

>

> To take the 2,000 iu dose you should do the blood test to see

where you are

> starting....it will depend on where you live (how much sun), skin

color,

> etc. Hopefully R. will respond with a suggested dose.

>

> One last comment is that this is frequently now referred to as the

> anti-cancer vitamin.....and that OHSU is doing some research

trials with

> megadoses of Vit D in certain cancers (like prostate). Goggle Vit

D and you

> will come up with some great information.

>

> And Vicki, I am so happy that you will be seeing Dr. Druker

> soon.......anyone who is not having a 'typical' response to

Gleevec needs

> to see a CML specialist for the best care.

>

> C.

> also go by Maui Nanc (my turtle, slow responder name)

>

[Guest guest]

At 04:01 AM 2/13/07 +0000, you wrote:

>I just assumed (with envy) that you lived in Maui! What a surprise

>to learn you're in Oregon. How did you earn the moniker " Maui

>Nanc? "

Hi ,

Oregon is pretty nice also! Maui has been a favorite vacation place for me

and family for many years.... my brother-in-law was a serious wind surfer!

We would snorkel and the absolute highlight of any trip for me was to see

and be in the midst of green sea turtles. They are amazing to watch.

When I started Gleevec (in 2000) most people had a quick response....but

there was a group of us who had a slow cytogenetic response, and we became

know as 'the turtles'. Then each of us choose our own turtle name.....and I

became , the Maui Turtle.....or Maui Nanc.

Others among this group included.....angelo Turtle (with confusing

chromosomes), Box Turtle, Desert Turtle, Turtle Dude and The Turtle Queen

of the East (coast). It was hard to see others responding well to this new

'miracle drug', so this brought us slow responders together for support.

Last time I went to Maui (4 years ago) I fried in the sun, so it was not as

much fun.....the water was dirty because of lots of rain and run off, and

we did not see any turtles until the last day when I was about to give up

and was swimming back to shore....I lifted my head and there was a large

turtle several feet away from me. We stayed with him for quite awhile and

took lots of photos.

Also in Native American lore (I believe) turtle is a symbol of 'the

world'.......and also stands for longevity, which is something those of us

with a slow response needed to believe. I still have many cml turtle

friends. As you can see, the history of these cml lists is long.

Maui Nanc (the turtle girl)

[Guest guest]

Thanks for the explanation, . I'm going to Maui with my family

at the end of March. I'll let you know how it was.

Warm regards.

> >I just assumed (with envy) that you lived in Maui! What a surprise

> >to learn you're in Oregon. How did you earn the moniker " Maui

> >Nanc? "

>

>

> Hi ,

> Oregon is pretty nice also! Maui has been a favorite vacation

place for me

> and family for many years.... my brother-in-law was a serious wind

surfer!

> We would snorkel and the absolute highlight of any trip for me was

to see

> and be in the midst of green sea turtles. They are amazing to

watch.

>

> When I started Gleevec (in 2000) most people had a quick

response....but

> there was a group of us who had a slow cytogenetic response, and

we became

> know as 'the turtles'. Then each of us choose our own turtle

name.....and I

> became , the Maui Turtle.....or Maui Nanc.

>

> Others among this group included.....angelo Turtle (with

confusing

> chromosomes), Box Turtle, Desert Turtle, Turtle Dude and The

Turtle Queen

> of the East (coast). It was hard to see others responding well to

this new

> 'miracle drug', so this brought us slow responders together for

support.

>

> Last time I went to Maui (4 years ago) I fried in the sun, so it

was not as

> much fun.....the water was dirty because of lots of rain and run

off, and

> we did not see any turtles until the last day when I was about to

give up

> and was swimming back to shore....I lifted my head and there was a

large

> turtle several feet away from me. We stayed with him for quite

awhile and

> took lots of photos.

>

> Also in Native American lore (I believe) turtle is a symbol

of 'the

> world'.......and also stands for longevity, which is something

those of us

> with a slow response needed to believe. I still have many cml

turtle

> friends. As you can see, the history of these cml lists is long.

>

> Maui Nanc (the turtle girl)

>

[Guest guest]

At 02:09 AM 2/14/07 +0000, you wrote:

>Thanks for the explanation, . I'm going to Maui with my family

>at the end of March. I'll let you know how it was.

It is a great family vacation , you will all have a wonderful time. I

see from your other post that you have daughters that are 10 and 6. I have

been to Maui quite a few times (an easy vacation from the west

coast)......if you would like any pointers before you go, let me know.

Where are you staying on the island? you will love it I think......from the

moment you see the color of the water from the air!

C.

[Guest guest]

Thank you, . We actually went about 11 years ago when it was

just my wife and I. Since we've had kids, we've vacationed in the

Caribbean several times but have never taken such a long flight with

them. I hate flying with a passion, so I'm not looking forward to

that part of it. I may have to be sedated. The consolation is that

we're staying at the Four Seasons, which is supposed to be really

nice. If you have any recommendations for restaurants or other

activities, fire away! (Although Latonia refuses to do the Road to

Hana again.)

Warm regards.

> >Thanks for the explanation, . I'm going to Maui with my

family

> >at the end of March. I'll let you know how it was.

>

> It is a great family vacation , you will all have a wonderful

time. I

> see from your other post that you have daughters that are 10 and

6. I have

> been to Maui quite a few times (an easy vacation from the west

> coast)......if you would like any pointers before you go, let me

know.

> Where are you staying on the island? you will love it I

think......from the

> moment you see the color of the water from the air!

>

> C.

>

[Guest guest]

At 03:58 AM 2/14/07 +0000, you wrote:

>Thank you, . We actually went about 11 years ago when it was

>just my wife and I. Since we've had kids, we've vacationed in the

>Caribbean several times but have never taken such a long flight with

>them. I hate flying with a passion, so I'm not looking forward to

>that part of it. I may have to be sedated. The consolation is that

>we're staying at the Four Seasons, which is supposed to be really

>nice. If you have any recommendations for restaurants or other

>activities, fire away! (Although Latonia refuses to do the Road to

>Hana again.)

Yes, the flight from San Fran is 5 hours, so it is a long one for you! Hope

the movie will be a good one. I am doing just the opposite....flying from

Portland, OR to Orlando, FL for my cruise.

I don't know where the Four Seasons is.......and you may know about most of

these areas, but doing the boardwalk in Lahaina is fun, with lots of art

galleries and giftie shops. Also largest Buddha is there at a temple. And

the Lahaina luau is the most authentic. Lahaina also has a Hard Rock Cafe

and Bubba Gumps since you have been there.

Nice drive to the other side of the island near Kahului is the Iao Needle

(nice little hike and park), then some great beaches to watch wind surfers.

Then on to Paia.....a cute little hippy community with a couple of great

casual fish restaurants.....gotta try fresh fish tacos if you have not had

them. From Paia ride upcountry a bit to Makawao, kind of a western town

with nice shops and a good Mexican restaurant. Upcountry is where the real

Hawaiian's live.

We usually stayed in Kihei, it has some nice beaches and you can hike along

the beach down into the Wailea area. There is the volcano to

visit....Haleakala, but this is a long windy drive (wife might nix).

If you have not been to Molokini.....nice family oriented snorkel cruises

that might be OK for your kids.....lots of colorful fish, it is a

preserve.......and a nice boat trip.

Probably my favs are Lahaina in the early evening (and for dinner), then

watch the sun set on the bay.....and the fish tacos in Paia. Have a great

trip and tell us about it when you get back.

C.

[Guest guest]

Thanks, . I hope you have a wonderful time on your cruise.

> >Thank you, . We actually went about 11 years ago when it was

> >just my wife and I. Since we've had kids, we've vacationed in the

> >Caribbean several times but have never taken such a long flight

with

> >them. I hate flying with a passion, so I'm not looking forward to

> >that part of it. I may have to be sedated. The consolation is that

> >we're staying at the Four Seasons, which is supposed to be really

> >nice. If you have any recommendations for restaurants or other

> >activities, fire away! (Although Latonia refuses to do the Road to

> >Hana again.)

>

> Yes, the flight from San Fran is 5 hours, so it is a long one for

you! Hope

> the movie will be a good one. I am doing just the

opposite....flying from

> Portland, OR to Orlando, FL for my cruise.

>

> I don't know where the Four Seasons is.......and you may know

about most of

> these areas, but doing the boardwalk in Lahaina is fun, with lots

of art

> galleries and giftie shops. Also largest Buddha is there at a

temple. And

> the Lahaina luau is the most authentic. Lahaina also has a Hard

Rock Cafe

> and Bubba Gumps since you have been there.

>

> Nice drive to the other side of the island near Kahului is the Iao

Needle

> (nice little hike and park), then some great beaches to watch wind

surfers.

> Then on to Paia.....a cute little hippy community with a couple of

great

> casual fish restaurants.....gotta try fresh fish tacos if you have

not had

> them. From Paia ride upcountry a bit to Makawao, kind of a western

town

> with nice shops and a good Mexican restaurant. Upcountry is where

the real

> Hawaiian's live.

>

> We usually stayed in Kihei, it has some nice beaches and you can

hike along

> the beach down into the Wailea area. There is the volcano to

> visit....Haleakala, but this is a long windy drive (wife might

nix).

> If you have not been to Molokini.....nice family oriented snorkel

cruises

> that might be OK for your kids.....lots of colorful fish, it is a

> preserve.......and a nice boat trip.

>

> Probably my favs are Lahaina in the early evening (and for

dinner), then

> watch the sun set on the bay.....and the fish tacos in Paia. Have

a great

> trip and tell us about it when you get back.

> C.

>