Re: A silent observer speaks

[Guest guest]

Hi Karyn, about Gleevec and sun, they really don't mix too well. I have

been a sun baby all my life and one of the things about cml is not getting

the tan I got my entire life. It's strange, Gleevec can make dark skinned

people have spotted light marks, and light skinned people are apt to get

darker spots. I still have marks from a gleevec rash that was so bad it

ulcerated. I try, no matter what drug I am on, sometimes I tan, sometimes I

don't, I am about to experiment with Ariad, if the sun ever comes out here

in Cleveland.

About the thinning hair, no help there, all mine ever does is the left top

side wants to curl! real hard to comb.

Good luck and good to hear from you.

On Sat, May 2, 2009 at 11:48 AM, karynt@... <karynt@...>wrote:

>

>

> Hi Everyone-

> Ive been a silent observer for many months now, learning so much from you

> all. Reading all the posts,Ive shed many tears and had some good chuckles as

> well. So thank you....

> As for me, i was dx July 14, 2008 and started on 400mg Gleevec July 26,

> 2008. I had a rough start, many side effects but i was able to manage

> through. I am so thrilled to report that after many months my BCR-ABL is

> ZERO!!!! So I think that means i am PCRU??? I want to be in the club...how

> does that happen? My Dr is following it up with a BMB on 5/12 which i pray

> will be normal.

> I have a couple of questions i would like your feedback on:

> 1-As summer approaches i was wondering if Gleevec makes you sun sensitive,

> has any one had experience with that?

> 2-My hair is thinning quite a bit not sure if it is because Ill be turning

> 50 this year (woo hoo) or perhaps another Gleevec side effect...any

> suggestions out there?

> I am so thankful for this group, it has truly made a difference in my life.

>

> Health and Happiness to you all-

> Karyn Tilander

> Auburn, Ca

>

>

>

>

--

a Doyle/dob 1929

DX 1995/Hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/06 - Sprycel Trial, MDACC, Dr. Talpaz

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

[Guest guest]

Hi Karyn,

Welcome to the group.

Melanin is what gives us our skin colour and what allows us to tan in the sun.

Unfortunately, Gleevec inhibits melanin production and as a result, many people

notice that their skin colour lightens. They also find that they don't tan very

well and instead, burn very easily. Be VERY careful when you go out in the sun

and use lots of sunscreen when you do. This is good advice for everyone but

especially for those of us on Gleevec.

As for the thinning hair, have you had your B12 checked? I notice that whenever

my B12 is low, my hair starts to thin.

Take care,

Tracey

>

> Hi Everyone-

> Ive been a silent observer for many months now, learning so much from you all.

Reading all the posts,Ive shed many tears and had some good chuckles as well. So

thank you....

> As for me, i was dx July 14, 2008 and started on 400mg Gleevec July 26, 2008.

I had a rough start, many side effects but i was able to manage through. I am so

thrilled to report that after many months my BCR-ABL is ZERO!!!! So I think that

means i am PCRU??? I want to be in the club...how does that happen? My Dr is

following it up with a BMB on 5/12 which i pray will be normal.

> I have a couple of questions i would like your feedback on:

> 1-As summer approaches i was wondering if Gleevec makes you sun sensitive, has

any one had experience with that?

> 2-My hair is thinning quite a bit not sure if it is because Ill be turning 50

this year (woo hoo) or perhaps another Gleevec side effect...any suggestions out

there?

> I am so thankful for this group, it has truly made a difference in my life.

>

> Health and Happiness to you all-

> Karyn Tilander

> Auburn, Ca

>

[Guest guest]

What superb news! Congratulations, Karyn.

During my first few months on Gleevec, my hair was falling out in gobs. I burst

into tears one day over it prompting my daughter to roar with laughter, as I

have enough hair on my head for five people. Anyway, when it came back in full

force, it was wiry and kinky. Funny, eh?

From: karynt@...

Date: Sat, 2 May 2009 15:48:07 +0000

Subject: [ ] A silent observer speaks

Hi Everyone-

Ive been a silent observer for many months now, learning so much from you all.

Reading all the posts,Ive shed many tears and had some good chuckles as well. So

thank you....

As for me, i was dx July 14, 2008 and started on 400mg Gleevec July 26, 2008. I

had a rough start, many side effects but i was able to manage through. I am so

thrilled to report that after many months my BCR-ABL is ZERO!!!! So I think that

means i am PCRU??? I want to be in the club...how does that happen? My Dr is

following it up with a BMB on 5/12 which i pray will be normal.

I have a couple of questions i would like your feedback on:

1-As summer approaches i was wondering if Gleevec makes you sun sensitive, has

any one had experience with that?

2-My hair is thinning quite a bit not sure if it is because Ill be turning 50

this year (woo hoo) or perhaps another Gleevec side effect...any suggestions out

there?

I am so thankful for this group, it has truly made a difference in my life.

Health and Happiness to you all-

Karyn Tilander

Auburn, Ca

_________________________________________________________________

Hotmail® has a new way to see what's up with your friends.

http://windowslive.com/Tutorial/Hotmail/WhatsNew?ocid=TXT_TAGLM_WL_HM_Tutorial_W\

hatsNew1_052009

[Guest guest]

Hi Karyn: Welcome to joining our group. You will get a lot of support for

whatever is going on. I am not a sun worshiper, therefore, I have not had a

problem with my Gleevec and sun exposure. I have never been one to worry about

getting a tan. I really am a cold weather person. I like my seasons.

As for the hair problem. I have a lot of hair. A little bit came out in

the beginning, but only noticeable to me. My thing is that my hair got a very

tight curl on the right side of my head, and then curls and waves in all

different places. I am actually putting a hair straightener in my hair when I

blow dry it now so I can manage it.

Please don't be a observer anymore, just join in. Some of your posts could

help a lot of us with our different issues. Again Welcome

[Guest guest]

O!!! YIPPEEE!!!

Number 1258 in the Zero Club

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

karynt@...

Sent: May-02-09 11:48 AM

Subject: [ ] A silent observer speaks

Hi Everyone-

Ive been a silent observer for many months now, learning so much from you

all. Reading all the posts,Ive shed many tears and had some good chuckles as

well. So thank you....

As for me, i was dx July 14, 2008 and started on 400mg Gleevec July 26,

2008. I had a rough start, many side effects but i was able to manage

through. I am so thrilled to report that after many months my BCR-ABL is

ZERO!!!! So I think that means i am PCRU??? I want to be in the club...how

does that happen? My Dr is following it up with a BMB on 5/12 which i pray

will be normal.

I have a couple of questions i would like your feedback on:

1-As summer approaches i was wondering if Gleevec makes you sun sensitive,

has any one had experience with that?

2-My hair is thinning quite a bit not sure if it is because Ill be turning

50 this year (woo hoo) or perhaps another Gleevec side effect...any

suggestions out there?

I am so thankful for this group, it has truly made a difference in my life.

Health and Happiness to you all-

Karyn Tilander

Auburn, Ca

[Guest guest]

Karyn:

Glivec does make many people sun sensitive, fragile skin - so keep covered, wear

lots of sun block, a hat , long sleeves and do not sunbake. (eg. I can burn

just putting out the clothes on the line)

Glivec also makes some peoples skin whiter over time -

(eg. This has happened to me - and I would think as time goes on - I will only

get whiter still - Oh ghost who walks)

Hair thinning

(Yes - this also happens - a few people have had hair loss -

eg. My hair become quite fine but I did not lose hair but my hair did not grow

quickly either - could go a couple of months without a hair cut.

Having said that - My hair has suddenly changed again - hair getting thicker,

curlier, and hair cuts every 6-8 weeks - amazing - such a change that people are

actually remarking on the hair thickness change.)

Note I have been PCRU since late 2008 so it just maybe that my health has

improved considerably.

I am glad that you have been able to manage your side effects on 400mg

- I am on 600mg - I have had many side effects from glivec but all have been

managed - some more successfully than others - but managed they have been.

Zavie is the man to ask to join the PCRU Zero Club - congratulations

I am Zerio # 1197

Keep Well and welcome

Sue (Aussie)

>

> Hi Everyone-

> Ive been a silent observer for many months now, learning so much from you all.

Reading all the posts,Ive shed many tears and had some good chuckles as well. So

thank you....

> As for me, i was dx July 14, 2008 and started on 400mg Gleevec July 26, 2008.

I had a rough start, many side effects but i was able to manage through. I am so

thrilled to report that after many months my BCR-ABL is ZERO!!!! So I think that

means i am PCRU??? I want to be in the club...how does that happen? My Dr is

following it up with a BMB on 5/12 which i pray will be normal.

> I have a couple of questions i would like your feedback on:

> 1-As summer approaches i was wondering if Gleevec makes you sun sensitive, has

any one had experience with that?

> 2-My hair is thinning quite a bit not sure if it is because Ill be turning 50

this year (woo hoo) or perhaps another Gleevec side effect...any suggestions out

there?

> I am so thankful for this group, it has truly made a difference in my life.

>

> Health and Happiness to you all-

> Karyn Tilander

> Auburn, Ca

>