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Re: Digest Number 2435

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I also personally worry about tagging children with "genetic" maybes because of the my concerns over how the insurance world is using our medical info to deny or withhold coverage and maybe life insurance, auto insurance -

Excellent point. We've worked around having our daughter "officially" diagnosed with some long-term illnesses, being afraid she wouldn't be able to get insurance.

Regarding tea: If you believe caffeine is harmful for you, go easy on tea, whether green or black. Depending on the leaf and how it's brewed, a cup of tea can contain quite a lot of caffeine. And, of course, chocolate and cola drinks contain caffeine.

Harper

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Dear ,

Thin blood and a clotting problem - sounds familiar only my clot is in the portal vein which supplies most of the blood to the liver. So even though it's caused because of my liver problem, I could become ineligible for transplant if the clot gets too large because apparently they can't attach the new vein on right. Boy, that one set me off big time! I too am fairly low on the numbers and have to have a CT every 3 months to monitor the clot. The "new" docs at the U always want to put me on blood thinners but the "experienced" docs, including my GI who is quite familiar with liver disease, say no way at this point. I guess with the platelettes running around 35 my blood is plenty thin ! Oh well, this weirdness just keeps us from boredom I guess...

Amy

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Hi!

I had a phone call from a friend the other night which I appreciated - an old college friend who has made it a effort to call every few months since she found out I was sick. But, this morning, being that this is pity party day, I got all upset about a comment she innocently made but it really felt bad. She said that my long term disability payment was pretty nice for doing nothing :( Gosh, if only I COULD do something, I'd be delighted.

Anyway, just had to vent - I'm better now.

Amy

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Amy,

Some times people just don't think. I'm sure she didn't realize how

offensive the statement was but I would have been upset also. You do plenty

by tolerating this horrible disease. That's they way I view it anyway. I

hope tomorrow will be a better day for you.

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Amy:

I have a sister that was in town two weeks ago and she was talking about people that don't look sick and have handicap parking. Boy did I ever say something to her because looking at me, I don't look a sick as I am but I know people say that all time. She didn't realize that she said that to me and my sister who also has 3 autoimmune diseases.

Sue/WI

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AMY,

SURE..........NOTHING BUT SITTING AROUND WONDERING WHY YOU DON'T EVEN HAVE

THE ENERGY TO DO THE LAUNDRY, DISHES AND SOMETIMES EVEN GET OUT OF BED HUH?

I WAS TALKING TO A FRIEND OF MINE TODAY AND SHE HAD BEEN TELLING ME ABOUT HER

WEEK. SHE WORKED 4 TWELVE HOUR SHIFTS, AND TAUGHT A DELIVERY CLASS ALL DAY

ON SATURDAY. GOOD HEAVENS, IS THAT HOW NORMAL PEOPLE REALLY LIVE?

HAVE A GREAT DAY

JENNIFER IN GEORGIA

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Amy,

Sometimes people can make such insensitive remarks, I often think they come out of ignorance rather then intention to be hurtful. People cant believe how an unsatisfying lifestyle on top of an illness can make things so much worse. I have been fortunate enough to stay consistently employed aside from some long bouts of sick leave. I have been on sick leave the past four weeks and moping around the house sleeping on & off all day, dependant on my husband to drive me everywhere, every other day either at the hospital or having some tests or bloodwork, it has become my life!

I too get angry that some people abuse sick time and disability so when people really need it it has a bad connotation. I rely sometimes on my on-line friends here for intelligent conversation! Love you guys!

Patty

-----Original Message-----From: holzboog@... [mailto:holzboog@...]Sent: Tuesday, August 06, 2002 8:31 PM Subject: Re: [ ] Digest Number 2435Hi! I had a phone call from a friend the other night which I appreciated - an old college friend who has made it a effort to call every few months since she found out I was sick. But, this morning, being that this is pity party day, I got all upset about a comment she innocently made but it really felt bad. She said that my long term disability payment was pretty nice for doing nothing :( Gosh, if only I COULD do something, I'd be delighted. Anyway, just had to vent - I'm better now.Amy

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  • 2 years later...

In a message dated 1/7/2005 10:38:46 A.M. Eastern Standard Time,

writes:

Message: 1

Date: Thu, 6 Jan 2005 10:59:57 -0500

From: " Angie Tate " <atate526@...>

Subject: Re: Out of the mouth of babes/brother

I'm so sure you must be a very proud parent. I read 's paper. It is

wonderful. What a great brother!!!! Way to go !

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In a message dated 1/7/2005 10:38:46 A.M. Eastern Standard Time,

writes:

Message: 1

Date: Thu, 6 Jan 2005 10:59:57 -0500

From: " Angie Tate " <atate526@...>

Subject: Re: Out of the mouth of babes/brother

I'm so sure you must be a very proud parent. I read 's paper. It is

wonderful. What a great brother!!!! Way to go !

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  • 5 months later...
Guest guest

Sounds like a bad choice for a doctor. Sorreeee. Mal

In a message dated 06/13/2005 9:08:01 PM Pacific Daylight Time,

writes:

> The gatekeeper they have is very strict. She told me they do not

> treat children, but it did not seem they would not see my son if

> referred by a primary care physician. I asked what, " in general "

> they do for mold patients with asthma to no avail. I asked at least

> three times, in the broadest of terms and specified I understood

> that any examples would not necessarily apply to our specific case

> with my son. She still would not budge. I asked about CSM and she

> said they was not familiar with that drug but said she was not the

> toxicologist and they could be using it even if she was not aware.

>

> What is wrong with asking their general protocols for treatment of

> mold/asthma or some examples or giving me to someone who can answer

> such questions? She would not give me a toxicologist's email

> address for any questions. She told me only our primary care

> physician could ask questions.

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  • 5 years later...

Dont' join this group!!!!!  I think it's some kind of con.  I joined because a

friend kept sending e-mails about joining.  She'd joined after getting an

invite

to join.  The invitations to join actually come from the website itself.  Once

you join the website strips all of you e-mail addresses from your address book

and sends invitations to join.  That's how you got an invitation, the website

nabbed my address book and send out invitations to everyone, even my support

groups.

I'm trying to find a way to get off the website but don't know how yet.   Will

tell you if I figure it out.  I'm running my anti-virus program now and will

let

you know if you have problems.

Sorry, I didn't intent this to happen.

Bob , Granger, IN

________________________________

From: " " < >

Sent: Tue, November 9, 2010 5:02:02 AM

Subject: [ ] Digest Number 2435

CML SUPPORT AND INFORMATION

Messages In This Digest (20 Messages)

1.

Vegas meeting From: ROBERTA DOYLE

2a.

medicare coverage for drugs? From: nchando@...

2b.

Re: medicare coverage for drugs? From: ROBERTA DOYLE

2c.

Re: medicare coverage for drugs? From: hey00nanc

2d.

Re: medicare coverage for drugs? From: Armour

2e.

Re: medicare coverage for drugs? From: hey00nanc

3.

Invitation to connect on LinkedIn From: Bob

4a.

Eye Bleed From: Sandy

4b.

Re: Eye Bleed From: Zavie

4c.

Re: Eye Bleed From: Shipley

4d.

Re: Eye Bleed From: Beverly Blair

4e.

Re: Eye Bleed From: Karine Vallier

4f.

Re: Eye Bleed From: ROBERTA DOYLE

5.

Meeting in Las Vegas From: Sandy

6a.

Re: cost of gleevec From: Dorothy Emery

7a.

Lasix and Advair From: Matt Maynor

7b.

Re: Lasix and Advair From: mtadros9@...

7c.

Re: Lasix and Advair From: Malseed

8.

Fw: 30% Off at Gap, Banana Republic & Old Navy From: Karine Vallier

9.

Fw: Kellena Sizemore Invites You to Save 30% At Gap, Banana Republic From:

Karine Vallier View All Topics | Create New Topic Messages

1.

Vegas meeting

Posted by: " ROBERTA DOYLE " rcd1929@...   rcd1929@...

Mon Nov 8, 2010 4:32 am (PST)

Hi, have not heard any more on this, and am planning a visit to California in

the spring, hopefully before May, as after April the desert is hot.  As this

involves several family members, and my daughter who would be traveling with me,

this trip takes precedent over a CML visit when I might have to travel alone. 

I

would love to put the two together so if anyone has any ideas on it, would love

to hear them.  Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

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I didn't mean don't join this CML group. It is very informative, active, with a

lot of interesting participants included.

I meant " Don't join LinkedIn " . All of my descriptions in the last e-mail were

about " LinkedIn " , not .

Sorry again--this time for not being clear.

Bob , Granger, IN

>

> Dont' join this group!!!!!  I think it's some kind of con.  I joined because

a

> friend kept sending e-mails about joining.  She'd joined after getting an

invite

> to join.  The invitations to join actually come from the website itself. 

Once

> you join the website strips all of you e-mail addresses from your address book

> and sends invitations to join.  That's how you got an invitation, the website

> nabbed my address book and send out invitations to everyone, even my support

> groups.

>

> I'm trying to find a way to get off the website but don't know how yet.  

Will

> tell you if I figure it out.  I'm running my anti-virus program now and will

let

> you know if you have problems.

>

> Sorry, I didn't intent this to happen.

>

> Bob , Granger, IN

>

>

>

>

> ________________________________

> From: " " < >

>

> Sent: Tue, November 9, 2010 5:02:02 AM

> Subject: [ ] Digest Number 2435

>

>

> CML SUPPORT AND INFORMATION

> Messages In This Digest (20 Messages)

> 1.

> Vegas meeting From: ROBERTA DOYLE

> 2a.

> medicare coverage for drugs? From: nchando@...

> 2b.

> Re: medicare coverage for drugs? From: ROBERTA DOYLE

> 2c.

> Re: medicare coverage for drugs? From: hey00nanc

> 2d.

> Re: medicare coverage for drugs? From: Armour

> 2e.

> Re: medicare coverage for drugs? From: hey00nanc

> 3.

> Invitation to connect on LinkedIn From: Bob

> 4a.

> Eye Bleed From: Sandy

> 4b.

> Re: Eye Bleed From: Zavie

> 4c.

> Re: Eye Bleed From: Shipley

> 4d.

> Re: Eye Bleed From: Beverly Blair

> 4e.

> Re: Eye Bleed From: Karine Vallier

> 4f.

> Re: Eye Bleed From: ROBERTA DOYLE

> 5.

> Meeting in Las Vegas From: Sandy

> 6a.

> Re: cost of gleevec From: Dorothy Emery

> 7a.

> Lasix and Advair From: Matt Maynor

> 7b.

> Re: Lasix and Advair From: mtadros9@...

> 7c.

> Re: Lasix and Advair From: Malseed

> 8.

> Fw: 30% Off at Gap, Banana Republic & Old Navy From: Karine Vallier

> 9.

> Fw: Kellena Sizemore Invites You to Save 30% At Gap, Banana Republic From:

> Karine Vallier View All Topics | Create New Topic Messages

>

> 1.

> Vegas meeting

> Posted by: " ROBERTA DOYLE " rcd1929@...   rcd1929@...

> Mon Nov 8, 2010 4:32 am (PST)

>

>

> Hi, have not heard any more on this, and am planning a visit to California in

> the spring, hopefully before May, as after April the desert is hot.  As this

> involves several family members, and my daughter who would be traveling with

me,

> this trip takes precedent over a CML visit when I might have to travel

alone.  I

> would love to put the two together so if anyone has any ideas on it, would

love

> to hear them.  Bobby

>

> a ( Bobby ) Doyle, dob 12/17/29

> DX 5/1995

> Interferon 9 weeks/Hydroxyurea 5 years

> 02/2000 to 06/2002 Gleevec trial, OHSU

> 06/2002 Gleevec/Trisenox Trial, OHSU

> 06/2003 Gleevec/Zarnestra Trial, OHSU

> 04/2004 Sprycel Trial, MDACC, CCR in 10 months

> 04/2008 XL228 Trial, U of Mich.

> 01/2009 PCR 5.69

> 04/2009 Ariad Trial AP24534

> 09/2009 PCR 0.01

> 11/2009 PCR 0.034

> 02/2010 PCRU

> #840 Zavie's Zero Club

>

>

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Hi all - I received a strange message from Bob through the CML Hope group that

somehow was connected to LinkedIn, and now I see this message on .

I've been a member of LinkedIn since it was founded in 2003 and have never had a

problem. I also teach classes in LinkedIn usage - it's an extremely valuable

professional business network. LinkedIn does not send out strange emails,

viruses do.

I hope you can resolve your problem Bob, I know what a pain these things can be.

Regards,

Pat in Phoenix

>

>

>

> I didn't mean don't join this CML group. It is very informative, active, with

a lot of interesting participants included.

>

> I meant " Don't join LinkedIn " . All of my descriptions in the last e-mail were

about " LinkedIn " , not .

>

> Sorry again--this time for not being clear.

>

> Bob , Granger, IN

>

>

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Don't worry about it, it seems to be happening a lot.  I just don't open

anything if I am not familiar with the sender, now I also don't open it from a

friend if I don't trust the subject.

Some geeks out there just having a good time at the expense of others.....

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: bob1234stewart <bob-stewart@...>

Subject: Re: [ ] Digest Number 2435

Date: Tuesday, November 9, 2010, 3:15 PM

 

I didn't mean don't join this CML group. It is very informative, active, with a

lot of interesting participants included.

I meant " Don't join LinkedIn " . All of my descriptions in the last e-mail were

about " LinkedIn " , not .

Sorry again--this time for not being clear.

Bob , Granger, IN

>

> Dont' join this group!!!!!  I think it's some kind of con.  I joined because

a

> friend kept sending e-mails about joining.  She'd joined after getting an

invite

> to join.  The invitations to join actually come from the website itself. 

Once

> you join the website strips all of you e-mail addresses from your address book

> and sends invitations to join.  That's how you got an invitation, the website

> nabbed my address book and send out invitations to everyone, even my support

> groups.

>

> I'm trying to find a way to get off the website but don't know how yet.  

Will

> tell you if I figure it out.  I'm running my anti-virus program now and will

let

> you know if you have problems.

>

> Sorry, I didn't intent this to happen.

>

> Bob , Granger, IN

>

>

>

>

> ________________________________

> From: " " < >

>

> Sent: Tue, November 9, 2010 5:02:02 AM

> Subject: [ ] Digest Number 2435

>

>

> CML SUPPORT AND INFORMATION

> Messages In This Digest (20 Messages)

> 1.

> Vegas meeting From: ROBERTA DOYLE

> 2a.

> medicare coverage for drugs? From: nchando@...

> 2b.

> Re: medicare coverage for drugs? From: ROBERTA DOYLE

> 2c.

> Re: medicare coverage for drugs? From: hey00nanc

> 2d.

> Re: medicare coverage for drugs? From: Armour

> 2e.

> Re: medicare coverage for drugs? From: hey00nanc

> 3.

> Invitation to connect on LinkedIn From: Bob

> 4a.

> Eye Bleed From: Sandy

> 4b.

> Re: Eye Bleed From: Zavie

> 4c.

> Re: Eye Bleed From: Shipley

> 4d.

> Re: Eye Bleed From: Beverly Blair

> 4e.

> Re: Eye Bleed From: Karine Vallier

> 4f.

> Re: Eye Bleed From: ROBERTA DOYLE

> 5.

> Meeting in Las Vegas From: Sandy

> 6a.

> Re: cost of gleevec From: Dorothy Emery

> 7a.

> Lasix and Advair From: Matt Maynor

> 7b.

> Re: Lasix and Advair From: mtadros9@...

> 7c.

> Re: Lasix and Advair From: Malseed

> 8.

> Fw: 30% Off at Gap, Banana Republic & Old Navy From: Karine Vallier

> 9.

> Fw: Kellena Sizemore Invites You to Save 30% At Gap, Banana Republic From:

> Karine Vallier View All Topics | Create New Topic Messages

>

> 1.

> Vegas meeting

> Posted by: " ROBERTA DOYLE " rcd1929@...   rcd1929@...

> Mon Nov 8, 2010 4:32 am (PST)

>

>

> Hi, have not heard any more on this, and am planning a visit to California in

> the spring, hopefully before May, as after April the desert is hot.  As this

> involves several family members, and my daughter who would be traveling with

me,

> this trip takes precedent over a CML visit when I might have to travel

alone.  I

> would love to put the two together so if anyone has any ideas on it, would

love

> to hear them.  Bobby

>

> a ( Bobby ) Doyle, dob 12/17/29

> DX 5/1995

> Interferon 9 weeks/Hydroxyurea 5 years

> 02/2000 to 06/2002 Gleevec trial, OHSU

> 06/2002 Gleevec/Trisenox Trial, OHSU

> 06/2003 Gleevec/Zarnestra Trial, OHSU

> 04/2004 Sprycel Trial, MDACC, CCR in 10 months

> 04/2008 XL228 Trial, U of Mich.

> 01/2009 PCR 5.69

> 04/2009 Ariad Trial AP24534

> 09/2009 PCR 0.01

> 11/2009 PCR 0.034

> 02/2010 PCRU

> #840 Zavie's Zero Club

>

>

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Share on other sites

OK. So Linked in does exist and is a good thing, so has someone else gotten into

their address book and is sending out emails?  I get odd mail from Karine

Vallier and Mel Swerlein, they are members of and did not send the

messages.  Sort of hard to know who to trust so you don't pick up a virus.

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: phoenixpat <phoenixpat@...>

Subject: Re: [ ] Digest Number 2435

Date: Tuesday, November 9, 2010, 3:41 PM

 

Hi all - I received a strange message from Bob through the CML Hope group

that somehow was connected to LinkedIn, and now I see this message on .

I've been a member of LinkedIn since it was founded in 2003 and have never had a

problem. I also teach classes in LinkedIn usage - it's an extremely valuable

professional business network. LinkedIn does not send out strange emails,

viruses do.

I hope you can resolve your problem Bob, I know what a pain these things can be.

Regards,

Pat in Phoenix

>

>

>

> I didn't mean don't join this CML group. It is very informative, active, with

a lot of interesting participants included.

>

> I meant " Don't join LinkedIn " . All of my descriptions in the last e-mail were

about " LinkedIn " , not .

>

> Sorry again--this time for not being clear.

>

> Bob , Granger, IN

>

>

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