Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 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) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 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) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2007 Report Share Posted February 14, 2007 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. > Quote Link to comment Share on other sites More sharing options...
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