Fwd: Digest Number 1562 thought some of us moght be interested in this l

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From:

Reply-to: notify-dg-

Sent: 10/10/2008 1:48:24 A.M. Eastern Daylight Time

Subj: [ ] Digest Number 1562

_CML SUPPORT AND INFORMATION _

(;_ylc=X3oDMTJlZG11c2ZlBF9TAzk3MzU5NzE1BGdycEl\

kAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWM

DaGRyBHNsawNocGgEc3RpbWUDMTIyMzYxNzY4NQ--)

Messages In This Digest (25 Messages)

1a.

_Re: COMMON ADVERSE REACTIONS TO TASIGNA_ (mip://03a93fa0/default.html#1a)

From: ICANDOALLTTC@...

2a.

_Re: Side effects- Jeanie_ (mip://03a93fa0/default.html#2a) From:

ICANDOALLTTC@...

2b.

_Re: Side effects- Jeanie_ (mip://03a93fa0/default.html#2b) From: Tracey

3.

_PCR......0.000_ (mip://03a93fa0/default.html#3) From: Edgardo

4a.

_PCR=0.000_ (mip://03a93fa0/default.html#4a) From: Edgardo

4b.

_Re: PCR=0.000_ (mip://03a93fa0/default.html#4b) From: Eva

4c.

_Re: PCR=0.000_ (mip://03a93fa0/default.html#4c) From: Émile Fichault

4d.

_Re: PCR=0.000_ (mip://03a93fa0/default.html#4d) From: Zavie

4e.

_Re: PCR=0.000_ (mip://03a93fa0/default.html#4e) From: Sionito@...

5.

_me_ (mip://03a93fa0/default.html#5) From: jclmal1998

6.

_Martha 's greetings to group_ (mip://03a93fa0/default.html#6) From:

Lottie Duthu

7.

_Re: PCR......0.000-Edgardo_ (mip://03a93fa0/default.html#7) From: seloew12

8a.

_Re: Skip_ (mip://03a93fa0/default.html#8a) From: Eva

8b.

_Re: Skip_ (mip://03a93fa0/default.html#8b) From: china neal

9a.

_Skip's Illness_ (mip://03a93fa0/default.html#9a) From: Lottie Duthu

9b.

_Re: Skip's Illness_ (mip://03a93fa0/default.html#9b) From: mary mary

10a.

_Jeanie's side effects_ (mip://03a93fa0/default.html#10a) From: Lottie

Duthu

10b.

_Re: Jeanie's side effects_ (mip://03a93fa0/default.html#10b) From: mary

mary

11.1.

_XL228_ (mip://03a93fa0/default.html#11.1) From: ROBERTA DOYLE

12a.

_Some progress_ (mip://03a93fa0/default.html#12a) From: Sue

13a.

_Night Sweats_ (mip://03a93fa0/default.html#13a) From: Sue

13b.

_Re: Night Sweats_ (mip://03a93fa0/default.html#13b) From: Eva

13c.

_Re: Night Sweats_ (mip://03a93fa0/default.html#13c) From: Schepman

14a.

_Re: Sprycel Diet_ (mip://03a93fa0/default.html#14a) From: Bernadette

Buentgen

15.

_Re: Some Progress_ (mip://03a93fa0/default.html#15) From: Martha

_View All Topics_

(/messages;_ylc=X3oDMTJnbGhzcG00BF9TAzk3MzU5Nz\

E1BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDZG1

zZwRzbGsDYXRwYwRzdGltZQMxMjIzNjE3Njg1?xm=1 & m=p & tidx=1) | _Create New Topic_

(/post;_ylc=X3oDMTJnZnNjcHNoBF9TAzk3MzU5NzE1

BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDZG1zZwRzbGsDbnRwYwRzdGltZQ

MxMjIzNjE3Njg1)

Messages

1a.

_Re: COMMON ADVERSE REACTIONS TO TASIGNA _

(/message/12316;_ylc=X3oDMTJzcW1pY3NuBF9TAzk3M\

zU5NzE1BGdycElkAzE0NzYyODAxBGdycH

NwSWQDMTcwNTA2MTYyOARtc2dJZAMxMjMxNgRzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjIzNjE3

Njg1)

Posted by: " ICANDOALLTTC@... " _ICANDOALLTTC@... _

(mailto:ICANDOALLTTC@...?Subject=

Re:%20COMMON%20ADVERSE%20REACTIONS%20TO%20TASIGNA)

_jeanies _ (jeanies)

Thu Oct 9, 2008 2:35 pm (PDT)

Hi Barb, it wasn't a site.

it was on the leaflet that came with my tasigna pack and was from Novartis.

Did you get an information pack with your Tasigna.

If so, it's in there.

It has some really wonderful info.

Jeanie<3

In a message dated 10/9/2008 5:45:04 A.M. Pacific Daylight Time,

_barbarastanley@barbara_ (mailto:barbarastanley@...) writes:

Jeanie

Where did you get this? Would you share the site?

Barb

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Dining, Movies, Events, News & more. Try it out

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YyOARtc2dJZAMxMjMxNgRzZWMDZG1zZwRzbGsDdnRwYwRzdGltZQMxMjIzNjE3Njg1BHRwY0lkAzEy

MzAz) (4)

2a.

_Re: Side effects- Jeanie _

(/message/12317;_ylc=X3oDMTJzdjNub3RmBF9TAzk3M\

zU5NzE1BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2M

TYyOARtc2dJZAMxMjMxNwRzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjIzNjE3Njg1)

Posted by: " ICANDOALLTTC@... " _ICANDOALLTTC@... _

(mailto:ICANDOALLTTC@...?Subject= Re:%20Side%20effects-%20Jeanie)

_jeanies _

(jeanies)

Thu Oct 9, 2008 2:52 pm (PDT)

Hi Tracey,

I have been with my onc since first being dx 5 years ago.

We have gone through many trials together and he is always there for me.

When I call his office, I don't get an answering machine, I get a real live

person.

I get my blood results the next day, and if anything is wrong, he calls me

right away.

I just like him and the way he treats me, so I'm sticking with him.

He will start giving me PCRS soon.

Thanks again for all you help.

Blessings,

Jeanie<3

In a message dated 10/8/2008 6:47:32 P.M. Pacific Daylight Time,

_traceyincanada@traceyinc_ (mailto:traceyincanada@...) writes:

Hi Jeanie,

It sounds like your doctor doesn't have a clue how to treat CML.

I've known hundreds of patients over the years, possibly thousands

and I've never heard of anyone not getting any PCR's.

Your life literally depends on you getting adequate treatment which

includes being monitored properly so I highly encourage you to get a

new doctor (like many of us have). I'm sorry if this sounds harsh but

you really don't want to be playing Russian Roulette with your life

do you?

Tracey

************************<WBR>**New MapQuest Local shows what's happening at y

Dining, Movies, Events, News & more. Try it out

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Re:%20Side%20effects-%20Jeanie) | _Reply via web post _

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dycElkAzE0NzYyODAxBGdycHNwS

WQDMTcwNTA2MTYyOARtc2dJZAMxMjMxNwRzZWMDZG1zZwRzbGsDcnBseQRzdGltZQMxMjIzNjE3Njg

1?act=reply & messageNum=12317)

_Messages in this topic _

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zU5NzE1BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MT

YyOARtc2dJZAMxMjMxNwRzZWMDZG1zZwRzbGsDdnRwYwRzdGltZQMxMjIzNjE3Njg1BHRwY0lkAzEw

MTk4) (14)

2b.

_Re: Side effects- Jeanie _

(/message/12336;_ylc=X3oDMTJzZ3VrOGhyBF9TAzk3M\

zU5NzE1BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2M

TYyOARtc2dJZAMxMjMzNgRzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjIzNjE3Njg1)

Posted by: " Tracey " _traceyincanada@... _

(mailto:traceyincanada@...?Subject= Re:%20Side%20effects-%20Jeanie)

_traceyincanada _

(traceyincanada)

Thu Oct 9, 2008 7:15 pm (PDT)

Hi Jeanie,

You said that you like your doctor because of the way he treats you

but the reality is that he put your life in danger by not monitoring

you properly.

You said that you asked him repeatedly to do PCR's and yet he ignored

your requests, so from my perspective (unbiased, objective), I don't

think he treated you well at all.

You also said that you were showing signs of acceleration for a year

before he decided to do something. Again, I don't see this as

treating you well, I see this as negligent.

The bottom line is that he's not following standard protocols. He

might be the nicest guy in the world but does that make it ok for him

to jeopardize your life? He should never have let you go into

accelerated phase before deciding to do something.

I just hope you realize what's at stake by choosing to stay with a

doctor who doesn't follow protocols and who seemingly doesn't know

very much about CML.

Tracey

>

> Hi, I, too had terrific night sweats and it wasn't because of

hormones, I was already on them, it was the CML. I would sleep on

beach towels and get up and change them every other hour or so. I

also found that working outdoors, the sweats would come and blind me

because of the salt dripping from my scalp and face. When I was

diagnosed and got my wbc under control, the sweats stopped. So

depending on whether you are male or female, are on hormones or just

beginning the menopausal cycle, you may be sweating for a different

reason. Now, where else could you talk about something like this,

but here?

> Blessings,

> Lottie

>

>