--- Begin Message ---
CMLHope
http://groups.google.com/group/CMLHope
CMLHope@googlegroups.com
Today's topics:
* white skin/Allyson - 3 messages, 3 authors
http://groups.google.com/group/CMLHope/browse_thread/thread/9d8e5d22dee6ae3a
* white skin - 3 messages, 3 authors
http://groups.google.com/group/CMLHope/browse_thread/thread/f665684d89d35b5
* Chat Reminder - This Evening - 9:00 PM - 1 messages, 1 author
http://groups.google.com/group/CMLHope/browse_thread/thread/5ded27ec98de1fb2
* Cytotoxic effects of histone deacetylase inhibitor FK228 (depsipeptide,
formally named FR901228) in combination with conventional anti-leukemia/
lymphoma agents against human leukemia/lymphoma cell lines. - 1 messages, 1
author
http://groups.google.com/group/CMLHope/browse_thread/thread/c6d63fecb7680478
* City of Hope making strides in understanding the cause of leukemia - 1
messages, 1 author
http://groups.google.com/group/CMLHope/browse_thread/thread/c297a657c2a80a03
* heart murmur - 2 messages, 2 authors
http://groups.google.com/group/CMLHope/browse_thread/thread/e5dcd765719fff99
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TOPIC: white skin/Allyson
http://groups.google.com/group/CMLHope/browse_thread/thread/9d8e5d22dee6ae3a
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== 1 of 3 ==
Date: Tues, Aug 1 2006 8:17 am
From: "Terry Dailey"
Allyson and Katy,
I am half irish and half American Indian and I also am pale, though I do tan
very easy. I am not sure how everyone else feels, but if I am out in the hot
sun for very long it starts to feel like I am in a mircowave..lol. It was a
running joke for a while in my family that you could watch me and I would
become pale then back to normal color right before you eyes. I also have
black hair so that does not help either. Along with dark circles under my
eyes.
Now I do avoid being out in the sun simply because I can't handle the heat
at all. I do need to disclose I am into sort of the "goth" look so for me
being pale is not a problem..rotfl. I have been told not to be out in the
sun for long periods which suits me just fine. I would check with your
doctor Allyson, but I do know their are rub on cremes that will give you a
tan without being in the sun. My lady use to get what they call "mystic
tan". It is a booth at a tanning salon here in our area that gives you a
spray on tan. It is kind of funny because when we have been out together we
have had commits that we look like a barbie doll and a vampire..hehe. That
is sort of ironic and me with my dark humor can't help but laugh because I
actually love vampire movies and I end up with a blood disorder..rotl.
Anyway Allyson, check with your doctor first but that rub on or spray on
stuff might help without you having to be in the sun.
Terry
On 7/31/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote:
>
> Dear Allyson,
> I have never heard that it is "bad" to get in the sun while taking
> gleevec just that it makes you more susceptible to burning so you have to be
> careful. I have attached a pic of me (hope it comes thru and you can see it)
> which goes to prove you can take gleevec and *still *get a tan!
> Hugs,
> Katy
> p.s... if the pic doesnt attach you can go to my xanga site below (
> xanga.com/katybug45) and my pic is on there. That was taken about a month
> ago and I am darker then that now.
>
>
> --
> xanga.com/katybug45
>
>
> -------------- Original message --------------
> From: "Allyson Morris" <[EMAIL PROTECTED]>
>
> I know we are all pale from Gleevec, but honestly, I am starting to look
> ridiculous! Does any know why exactly it is bad to get some sun....? Would I
> even be able to hold the color if I did get some sun?
>
> Looking paler,
>
> Allyson
>
>
> >
>
>
== 2 of 3 ==
Date: Tues, Aug 1 2006 9:19 am
From: [EMAIL PROTECTED]
Hi Katy,
I am soooo jealous of your tan - it is beautiful!!! Karyn, Tony's mom
-------------- Original message --------------
From: [EMAIL PROTECTED]
Dear Allyson,
I have never heard that it is "bad" to get in the sun while taking gleevec
just that it makes you more susceptible to burning so you have to be careful. I
have attached a pic of me (hope it comes thru and you can see it) which goes to
prove you can take gleevec and still get a tan!
Hugs,
Katy
p.s... if the pic doesnt attach you can go to my xanga site below
(xanga.com/katybug45) and my pic is on there. That was taken about a month ago
and I am darker then that now.
--
xanga.com/katybug45
-------------- Original message --------------
From: "Allyson Morris" <[EMAIL PROTECTED]>
I know we are all pale from Gleevec, but honestly, I am starting to look
ridiculous! Does any know why exactly it is bad to get some sun....? Would I
even be able to hold the color if I did get some sun?
Looking paler,
Allyson
== 3 of 3 ==
Date: Tues, Aug 1 2006 11:56 am
From: [EMAIL PROTECTED]
lol......thank you Karyn......I kinda cheated though.....I take vitamin B150
which it is either vit. B 6 or B 12 that helps you tan! Plus I have a pool so I
lay out in it a couple of hours two or three times a week. But thank you I feel
so much better when I have a tan then when I dont and I have a lot more
confidence.
Hugs,
Katy
--
xanga.com/katybug45
-------------- Original message --------------
From: [EMAIL PROTECTED]
Hi Katy,
I am soooo jealous of your tan - it is beautiful!!! Karyn, Tony's mom
-------------- Original message --------------
From: [EMAIL PROTECTED]
Dear Allyson,
I have never heard that it is "bad" to get in the sun while taking gleevec
just that it makes you more susceptible to burning so you have to be careful. I
have attached a pic of me (hope it comes thru and you can see it) which goes to
prove you can take gleevec and still get a tan!
Hugs,
Katy
p.s... if the pic doesnt attach you can go to my xanga site below
(xanga.com/katybug45) and my pic is on there. That was taken about a month ago
and I am darker then that now.
--
xanga.com/katybug45
-------------- Original message --------------
From: "Allyson Morris" <[EMAIL PROTECTED]>
I know we are all pale from Gleevec, but honestly, I am starting to look
ridiculous! Does any know why exactly it is bad to get some sun....? Would I
even be able to hold the color if I did get some sun?
Looking paler,
Allyson
==============================================================================
TOPIC: white skin
http://groups.google.com/group/CMLHope/browse_thread/thread/f665684d89d35b5
==============================================================================
== 1 of 3 ==
Date: Tues, Aug 1 2006 8:13 am
From: "anjana"
Hi Allyson and Sandy,
Gleevec patients get pale because their skin loses pigment. Roy is
very white and our doctor explained this to us. Gleevec inhibits an
enzyme which has an effect on the skin pigment and Gleevec patients
have hypopigmentation as in loss of pigment. When you are pale and
have less pigment, your skin is not protected from the harmful rays of
the sun. Our doctor told Roy to put on sun screen if in the sun for
long or he is at risk for skin cancer. The skin pigment protects
against the sun's UV rays and so if you have less of the pigment, the
UV rays may harm.
That is why put on sunscreen if you are out in the sun for long
periods. This Gleevec side-effect has also been described in the CML
literature.
Best Wishes,
Anjana
caregiver to Roy
== 2 of 3 ==
Date: Tues, Aug 1 2006 9:22 am
From: "Allyson Morris"
I was told to always apply sunscreen for we are at a greater risk of
burning...sunscreen prevents me from getting color, hence the pale skin.
From: _Sandy Johnson <[EMAIL PROTECTED]>Reply-To:[EMAIL PROTECTED]:[EMAIL
PROTECTED]: _[CMLHope] Re: white skinDate: _Mon, 31 Jul 2006 19:15:12 -0700
(PDT)
Hi Allyson,I wasn't aware that it was bad for you to be in the sun,while on
gleevec.Randy is an electrician and is out side a lot.He has a real dark sun
tan. Did the DR. tell you to stay out of the sun? I don't recall anyone telling
us that.Sandy*_Allyson Morris <[EMAIL PROTECTED]> wrote:
I know we are all pale from Gleevec, but honestly, I am starting to look
ridiculous! Does any know why exactly it is bad to get some sun....? Would I
even be able to hold the color if I did get some sun?
Looking paler,
Allyson
Do you Yahoo!?
Get on board. You're invited to try the new Yahoo! Mail Beta.
== 3 of 3 ==
Date: Tues, Aug 1 2006 7:14 pm
From: [EMAIL PROTECTED]
Allyson,
Yes we are at a greater risk because Gleevec makes us photosensitive, but,
you can still get a tan if your careful. Alot depends also on how you were
before gleevec and CML.....did you tan easily? Are you or were you very fair
complected. I have always tanned quite easily, I like Terry have a lot of
American Indian in me. I used to burn as much as I tanned though because I was
young and stupid about it. Now I dont rush out the first time in the sun and
stay 8 or 9 hours in the lake slathered up like a greased pig!....lol...One
time I even "rotiserized"!! with Parkay squeeze margerin believe it or
not...hehe...(someone told me it "browned" you) I smelled like a giant popcorn
ball and the bugs luved me!!! The last few years though I have started out with
banana boat oil spf8 then went to 4 and for the last six weeks or so I dont use
anything. Once I get a base tan I dont use any oils or lotions because it clogs
up the pump on our pool. And I am rarely in the pool more then 3 or 4
hours and usually only about 2. Heat also gets to me but laying out in the pool
is easier because I can cool off. I have been kinda aggravated lately because
for the last week I havent been able to get out there. I had to much to do and
then when I finally have a chance.......I wake up with a bad summer cold!! I
woke up yesterday sooooo stopped up and then today when I woke up it had
dropped in my chest. I am misserable and as much as I would like to get out
there and paddle around, I just feel to bad. Just take it slow and be careful
and you can tan.
Hugs,
Katy
--
xanga.com/katybug45
-------------- Original message --------------
From: "Allyson Morris" <[EMAIL PROTECTED]>
I was told to always apply sunscreen for we are at a greater risk of
burning...sunscreen prevents me from getting color, hence the pale skin.
From: Sandy Johnson <[EMAIL PROTECTED]>
Reply-To: CMLHope@googlegroups.com
To: CMLHope@googlegroups.com
Subject: [CMLHope] Re: white skin
Date: Mon, 31 Jul 2006 19:15:12 -0700 (PDT)
Hi Allyson,I wasn't aware that it was bad for you to be in the sun,while on
gleevec.Randy is an electrician and is out side a lot.He has a real dark sun
tan. Did the DR. tell you to stay out of the sun? I don't recall anyone telling
us that.Sandy
Allyson Morris <[EMAIL PROTECTED]> wrote:
I know we are all pale from Gleevec, but honestly, I am starting to look
ridiculous! Does any know why exactly it is bad to get some sun....? Would I
even be able to hold the color if I did get some sun?
Looking paler,
Allyson
Do you Yahoo!?
Get on board. You're invited to try the new Yahoo! Mail Beta.
==============================================================================
TOPIC: Chat Reminder - This Evening - 9:00 PM
http://groups.google.com/group/CMLHope/browse_thread/thread/5ded27ec98de1fb2
==============================================================================
== 1 of 1 ==
Date: Tues, Aug 1 2006 2:50 pm
From: "Zavie miller"
Chat Reminder - This Evening - 9:00 PM
Photo - Boating on the Ottawa River
==============================================================================
TOPIC: Cytotoxic effects of histone deacetylase inhibitor FK228 (depsipeptide,
formally named FR901228) in combination with conventional anti-leukemia/
lymphoma agents against human leukemia/lymphoma cell lines.
http://groups.google.com/group/CMLHope/browse_thread/thread/c6d63fecb7680478
==============================================================================
== 1 of 1 ==
Date: Tues, Aug 1 2006 7:35 pm
From: [EMAIL PROTECTED]
Hey Rob,
How about breakin that down in english? *S*......
hugs,
katy
--
xanga.com/katybug45
-------------- Original message --------------
From: Rob <[EMAIL PROTECTED]>
Cytotoxic effects of histone deacetylase inhibitor FK228 (depsipeptide,
formally named FR901228) in combination with conventional
anti-leukemia/lymphoma agents against human leukemia/lymphoma cell lines.
--
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TOPIC: City of Hope making strides in understanding the cause of leukemia
http://groups.google.com/group/CMLHope/browse_thread/thread/c297a657c2a80a03
==============================================================================
== 1 of 1 ==
Date: Tues, Aug 1 2006 6:15 pm
From: "mburwen"
I am treated at City of Hope, the only NCI site in Southern California.
I try to keep up with its layman literature, and just received some
info that might be of interest to CMLHope readers. I'll paraphrase:
"The underlying cause of all leukemias is the presence of leulemia stem
cells. Although leukemic cells might be eradicated, the leukemic stem
cells may sit in a dormant state, "hibernating" through treatment, only
to awaken at a later date. (That's why most Drs. want you to remain on
Gleevec, even after PCRU.) City of Hope's leukemia research is focused
on finding vulnerabilities in the leukemic stem cells and figuring out
how to test for their presence. Apparently their scientists have
discovered some markers that hold potential. They are currently
designing a clinical trial to evaluate whether providing growth factors
to leukemia patients stimulates leukemia stem cells and/or makes the
cells more vulnerable to cancer-killing therapies. It turns out that
10% of patients with lymphoma who undergo BMT develop leukemia!
Therefore, some scientists have postulated that leukemia might be
better understood by looking at certain aspects of lymphomas.
Because City of Hope treats all types of blood cancers and is the
country's second largest BMT Center, it is well-positioned to pursue
this avenue of research."
I can tell from my visits there that the staff is excited about the
prospects of this research.
Mike Burwen
==============================================================================
TOPIC: heart murmur
http://groups.google.com/group/CMLHope/browse_thread/thread/e5dcd765719fff99
==============================================================================
== 1 of 2 ==
Date: Tues, Aug 1 2006 8:32 pm
From: Cindy Lewis
Hi Amber,
I've got a heart murmur, too! I was diagnosed with CML on 11/99, and was
39 years old at the time. I tried interferon/Ara-C for a year with no results.
I was in a Gleevec trial after that and have been on it ever since, reaching
zero club status 12/01. In 2003 I moved, and after a few visits to my new
oncologist, she said, while listening to my heart, "there's your murmur..."
!!! I said, "What murmur???" She said, "The one you've always had!" I told
her I'd never had a murmur, which alarmed her, so she ordered an echo. I got
the same sort of report as you- that it was a "normal" murmur, probably
previously undetected. I don't agree - I think it has developed recently! I
checked with my previous oncologist, who is very meticulous, and he didn't
remember it nor had he noted it in my chart.
I have asked my doctor to follow this to see if it changes, and am having
another echo on Friday. I'll keep you updated. Has anyone else out there
developed a murmur that nobody ever noticed before? We may be on to something
here.
Cindy Lewis
dx 11/99, 600 mg Gleevec, Zero Club #190
Cindy Lewis
[EMAIL PROTECTED]
---------------------------------
Want to be your own boss? Learn how on Yahoo! Small Business.
== 2 of 2 ==
Date: Tues, Aug 1 2006 8:54 pm
From: "Richard Troxel"
Hi Cindy,
I can remember my mother telling me that as a child I had a heart murmur but
that the doctors insisted I would grow out of it, I did.
Now my cardiologist has found that I again have a heart murmur, I'm 62. She
says that this is very common in men and women at my age and should not
interfere with my life style or life expectancy. I think you should ask your
ONC to refer you to a good cardiologist for routine follow up, that's what
I've done and I feel very secure with this team in my corner.
Richard T.
dx 2/2003 PCRU 9/2004
On 8/1/06, Cindy Lewis <[EMAIL PROTECTED]> wrote:
>
> Hi Amber,
> I've got a heart murmur, too! I was diagnosed with CML on 11/99, and
> was 39 years old at the time. I tried interferon/Ara-C for a year with no
> results. I was in a Gleevec trial after that and have been on it ever
> since, reaching zero club status 12/01. In 2003 I moved, and after a few
> visits to my new oncologist, she said, while listening to my heart, "there's
> your murmur..." !!! I said, "What murmur???" She said, "The one you've
> always had!" I told her I'd never had a murmur, which alarmed her, so she
> ordered an echo. I got the same sort of report as you- that it was a
> "normal" murmur, probably previously undetected. I don't agree - I think it
> has developed recently! I checked with my previous oncologist, who is
> very meticulous, and he didn't remember it nor had he noted it in my
> chart.
>
> I have asked my doctor to follow this to see if it changes, and am having
> another echo on Friday. I'll keep you updated. Has anyone else out there
> developed a murmur that nobody ever noticed before? We may be on to
> something here.
>
> Cindy Lewis
> dx 11/99, 600 mg Gleevec, Zero Club #190
>
>
> Cindy Lewis
> [EMAIL PROTECTED]
>
> ------------------------------
> Want to be your own boss? Learn how on Yahoo! Small
> Business.<http://us.rd.yahoo.com/evt=41244/*http://smallbusiness.yahoo.com/r-index>
> >
>
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