Hello everyone

[Guest guest]

Terry,

Thanks for the support and give that wonderful wife of

yours a big hug.

--- Terry Dailey <terrydailey@...> wrote:

> Wow,

>

> I am sorry for you Tammy and chimera. I know the

> feeling though because my

> wife left me shortly after my dx in April of 04. I

> even had " the talk " with

> her about how many marriages and relationships do

> not survive cancer or

> Leukemia and the whole time she said we would be

> fine. Then she stopped

> going with me to doctor visits, stopped even asking

> what the doctor said,

> and started hovering on websites that talked about

> the end of the

> world..lol. She basically lost her mind in my

> opinion, even going as far as

> telling my then 11 year old son and 15 year old

> step-son it was their fault

> I was sick???

> I had to be the one after over a year to file and

> pay for the divorce, but

> it was worth it. I found out later she had made a

> profile on an online

> dating service 10 days before she told me to

> leave..lol.The woman I married

> before being dx'ed does not exist anymore. It was

> like flipping a switch,

> she turned from a caring loving wife, to a self

> centered, psychotic nutjob.

> I have came to realize that those that disappear

> from your life when they

> find out you have CML, you were better off without

> in the long run. A bit of

> advice for you if you happen to be on pain meds...If

> you meet someone online

> or even in real life (as I call it) DO NOT let them

> know you are taking pain

> medication! Unfortunately before I met the lovely

> lady I am married to now,

> I met a couple of " ladies " that once they found out

> I had pain meds showed

> interest until I closed the pharmacy..lol. The woman

> I am married to now

> does worry sometimes about me, but she does not

> bother my medications, and

> is very supportive.

> I have been on 400mg's of Gleevec since April of 04,

> and still have bone

> pain, those embarrassing muscle cramps(they do tend

> to happen at the worst

> times..lol) fatigue, nausea, and I cannot keep

> weight on. I was 160 now I

> hover between 137 to 140lbs. The only side effect

> that really has subsided

> over the years is the eye swelling. Over all though

> I cannot complain, I

> have (now) a great wife, and family. Granted we are

> not at the financial

> level I am use to because I am unable to work, but

> we get by and are far

> from living on the street. I have had to get used to

> being on SSD, and

> medicare because until recently I was able to keep

> my insurance from my

> previous job, but there are allot of people far

> worse off then I am. So hang

> in there things do and will get better. My docs tell

> me the Gleevec is still

> working great and most of my side effects are

> managed by other medications.

> I am now 40 and plan on seeing my grand kids

> grow...Just not ready for my

> kids to be parents just yet though..lol.

>

> Terry

> Dxed April 04

> 40 years old

>

>

> On 10/5/07, Tammy Ferns <tammy@...>

> wrote:

> >

> > ,

> > No, it was broken too. (For some reason the word

> that describes that

> > escapes

> > me.) It was too heavy they figured, and cracked

> open.

> > Thanks.

> > Tammy

> >

> > [ ] Hello everyone

> >

> > I have been hiding in the background, reading the

> posts and learning

> >

> > so much. Here is a bit about me. I'm a divorced

> mom of a 13 year

> >

> > old great daughter. I work as a social worker. I

> graduated from

> >

> > Penn State and The University of Southern

> California. I used to love

> >

> > spicy food and margaritas but I have modified my

> diet to the healthy

> >

> > side. I was diagnosed in March after five months

> of testing when my

> >

> > Hem/Onc thought I had a platelet disease because

> they were over 600.

> >

> > Then my WBC count started flying higher than the

> space shuttle and I

> >

> > he sent me for a bone marrow aspiration. I started

> Gleevec at 300 mg

> >

> > because my RBC count was so low. My WBC count

> almost dropped off the

> >

> > charts but after begging him , he finally moved me

> up to 400mg. I've

> >

> > had two Q-RT-PCR tests done. I keep reading taht

> people get results

> >

> > in terms of log reductions or %.

> >

> > Here is what my results say- I have p210 BCR-ABL

> transcrip but I

> >

> > don't know if it is b2a2 or b3a2. I have a blurry

> copy but it

> >

> > looks like it says- results on 5/29 were 1.1x10-3(

> to the third

> >

> > power) and on 7/15/07 the results were 4.4x10-4.

> Does anyone have

> >

> > any idea what it means. My Hem/ONc said it shows

> improvement.

=== message truncated ===

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[Guest guest]

,

Good question about working. I'm a divorced mom. I

work full time but some days it is so hard to drag

myself out of bed. I find myself napping more and

more- sleeping in my car at lunchtime etc. How about

it you veterans with 3 and 4 years under your belts-

does it get any better?

Thanks,

Chi

--- Malseed <rodorbal@...> wrote:

> Hi Terry and the other listers who have had marriage

> problems,

>

> What an absolute kick in the guts - particularly

> when CML is not as

> debilitating as a lot of other cancers or illnesses

> (I guess that has to be

> taken in the context of how each individual deals

> with their illness and

> symptoms). Having been a nurse, I know there are a

> lot worse things in life!

> I'm so glad you have got a supportive wife now

> Terry, it must have been a

> terrible time to go through with dealing with your

> illness and then the

> marriage breakup.

>

> I was wondering with the comments in the past week,

> how many people find

> they cannot work now? Also, I wonder about the

> muscle cramps. I haven't

> experienced any yet (touch wood), however my haem/t

> put me straight onto

> magnesium supplements 3 times a day to help stop

> them.

>

> I am the main income earner and have a very

> supportive boss and

> organization, but am still pretty flying it at this

> stage as to how I will

> cope. I also have inflammatory bowel disease, which

> has been settled for

> quite some time, but now lovely Glivec is stirring

> it all up and gastric

> reflux.

>

> Of the listers who work full time, can you remember

> back to how you coped at

> the time and managed to work - did you have to work

> shorter hours initially?

>

> And the long term listers - what sort of chronic

> symptoms do you have still?

>

>

>

> Regards,

>

>

>

>

> www.geocities.com/rodorbal

> http://au./group/Ozlabradors/

> www.labradata.com

> RE: [ ] Hello everyone

> >

> > Wow--I had no idea they removed spleens just cuz

> they are enlarged. Sorry

> > to

> > hear about your divorce, you will find many people

> on this forum here to

> > help you...

> >

> >

> >

> > Hi. I am 35 - diagnosed in August after having my

> enlarged

> > spleen removed in

> >

> > emergency surgery. I just wanted to say hi. It is

> interesting to find

> >

> > someone going through this illness and a 'divorce'

> or break-up at the same

> >

> > time. My hubby pushed me out. (I left the house,

> but he pushed.) I am

> > having

> >

> > a heck of a time with not only the illness, but

> the divorce situation too.

> > I

> >

> > have an appointment on the 16th, but am having

> headaches and reflux. But I

> >

> > am getting through each day, and getting stronger!

> >

> > Tammy

> >

> > _____

> >

> > From:

> <%40> [mailto:

>

=== message truncated ===

________________________________________________________________________________\

____

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[Guest guest]

Hi Chi,

The difference between those two PCR numbers is less than a log but

the time frame between them is less than 2 months so you can't expect

too big of a drop in that amount of time. Also, PCR results are

notoriously inaccurate early on in the diagnosis. They are much more

useful to do after you reach CCR (which should be confirmed with a

BMB). Have you had another BMB or BMA since your diagnosis? Usually

doctors like to do them between 3 and 6 months after Gleevec is

started.

Your hemoglobin is really low, how often are you having it checked?

Iron supplements will only help if the reason for your anemia is due

to iron deficiency. You would know if this was the case if your

ferritin is very low. There are several reasons you could have low

hemoglobin so you want to ask if iron supplements will help or if

Procrit might help or even B12.

Gleevec will cause your skin to lighten but so will anemia so you

have both strikes going for you there. People with darker skin will

obviously notice the lightening of the skin more easily than white

people but even those of us who are white, have noticed that we went

from lilly white to almost translucent white. It can be disturbing

and you may start to burn easily as a result of the skin changes so

be careful in the sun. Many of our members have found that they can

no longer tan like they used to.

All the terms and acronyms take time to get used to but don't worry,

soon you'll be talking the alphabet soup just like the rest of us

Take care,

Tracey

> > >

> > > I have been hiding in the background, reading the

> > posts and

> > learning

> > > so much. Here is a bit about me. I'm a divorced

> > mom of a 13 year

> > > old great daughter. I work as a social worker. I

> > graduated from

> > > Penn State and The University of Southern

> > California. I used to

> > love

> > > spicy food and margaritas but I have modified my

> > diet to the

> > healthy

> > > side. I was diagnosed in March after five months

> > of testing when my

> > > Hem/Onc thought I had a platelet disease because

> > they were over

> > 600.

> > > Then my WBC count started flying higher than the

> > space shuttle and

> > I

> > > he sent me for a bone marrow aspiration. I

> > started Gleevec at 300

> > mg

> > > because my RBC count was so low. My WBC count

> > almost dropped off

> > the

> > > charts but after begging him , he finally moved me

> > up to 400mg.

> > I've

> > > had two Q-RT-PCR tests done. I keep reading taht

> > people get

> > results

> > > in terms of log reductions or %.

> > >

> > > Here is what my results say- I have p210 BCR-ABL

> > transcrip but I

> > > don't know if it is b2a2 or b3a2. I have a

> > blurry copy but it

> > > looks like it says- results on 5/29 were 1.1x10-3(

> > to the third

> > > power) and on 7/15/07 the results were 4.4x10-4.

> > Does anyone have

> > > any idea what it means. My Hem/ONc said it shows

> > improvement. My

> > > labs on 8/25 were WBC 3.9, RBC 3.29,HGB 10, RDW

> > 17.6, Neut 58.5,

> > ANC

> > > 2.28, platelets 332.

> > >

> > > I have many of the lovely side effects including

> > losing my color in

> > > my hands, feets, lips and other hyperpigmented

> > parts of my body-

> > very

> > > interesting. The bone pain is strange and the

> > various muscle spasms

> > > are real attention getters when I'm talking to

> > people. Has anyone

> > > else experienced a sensitivity to constriction?

> > My knees socks

> > left

> > > a band of red around my leg with some slight

> > bruising- ok they

> > were

> > > fencing kneesocks which are supposed to not fall

> > down and are

> > tighter

> > > than normal but - still I got a bruise from

> > kneesocks.

> > >

> > > I joined Team in Training with TH LLS and will be

> > walking a 1/2

> > > marathon here in Orange County/ Southern

> > California in January and

> > > hopefully another in April in Nashville the day

> > after my 56th b-

> > day.

> > > If anyone is close to either place I'd love to

> > meet you.

> > >

> > > Thank you- all of you- so much for posting and

> > giving me a place

> > to

> > > belong. It is nice to have friends on this

> > journey. My boyfriend

> > > left because he couldn't stand to think about me

> > dying- well that

> > was

> > > the excuse anyway. Hang in there everyone.

> > >

> >

> >

> >

>

>

>

>

______________________________________________________________________

______________

> Tonight's top picks. What will you watch tonight? Preview the

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>

[Guest guest]

Hi Chi – you would laugh, I feel exactly the same and my staff say to me I

need to take the table and chairs out of my office and put a sofa in LOL.

They do lots of “silly” things to the office when I am away, which is a

great laugh and I have been expecting to come in one day and find a blow up

bed tucked away in the corner LOL.

Regards,

Rodorbal Labradors & Dachshund Smooths Australia

www.geocities.com/rodorbal

http://au./group/Ozlabradors/

www.labradata.com

_____

From: [mailto: ] On Behalf Of china

neal

Sent: Tuesday, 9 October 2007 8:24 AM

Subject: RE: [ ] Hello everyone

,

Good question about working. I'm a divorced mom. I

work full time but some days it is so hard to drag

myself out of bed. I find myself napping more and

more- sleeping in my car at lunchtime etc. How about

it you veterans with 3 and 4 years under your belts-

does it get any better?

Thanks,

Chi

--- Malseed <rodorbalwestvic (DOT) <mailto:rodorbal%40westvic.com.au>

com.au> wrote:

> Hi Terry and the other listers who have had marriage

> problems,

>

> What an absolute kick in the guts - particularly

> when CML is not as

> debilitating as a lot of other cancers or illnesses

> (I guess that has to be

> taken in the context of how each individual deals

> with their illness and

> symptoms). Having been a nurse, I know there are a

> lot worse things in life!

> I'm so glad you have got a supportive wife now

> Terry, it must have been a

> terrible time to go through with dealing with your

> illness and then the

> marriage breakup.

>

> I was wondering with the comments in the past week,

> how many people find

> they cannot work now? Also, I wonder about the

> muscle cramps. I haven't

> experienced any yet (touch wood), however my haem/t

> put me straight onto

> magnesium supplements 3 times a day to help stop

> them.

>

> I am the main income earner and have a very

> supportive boss and

> organization, but am still pretty flying it at this

> stage as to how I will

> cope. I also have inflammatory bowel disease, which

> has been settled for

> quite some time, but now lovely Glivec is stirring

> it all up and gastric

> reflux.

>

> Of the listers who work full time, can you remember

> back to how you coped at

> the time and managed to work - did you have to work

> shorter hours initially?

>

> And the long term listers - what sort of chronic

> symptoms do you have still?

>

>

>

> Regards,

>

>

>

>

> www.geocities.com/rodorbal

> http://au.groups. <http://au./group/Ozlabradors/>

/group/Ozlabradors/

> www.labradata.com

> RE: [ ] Hello everyone

> >

> > Wow--I had no idea they removed spleens just cuz

> they are enlarged. Sorry

> > to

> > hear about your divorce, you will find many people

> on this forum here to

> > help you...

> >

> >

> >

> > Hi. I am 35 - diagnosed in August after having my

> enlarged

> > spleen removed in

> >

> > emergency surgery. I just wanted to say hi. It is

> interesting to find

> >

> > someone going through this illness and a 'divorce'

> or break-up at the same

> >

> > time. My hubby pushed me out. (I left the house,

> but he pushed.) I am

> > having

> >

> > a heck of a time with not only the illness, but

> the divorce situation too.

> > I

> >

> > have an appointment on the 16th, but am having

> headaches and reflux. But I

> >

> > am getting through each day, and getting stronger!

> >

> > Tammy

> >

> > _____

> >

> > From: groups (DOT) <mailto:%40> com

> <%40> [mailto:

>

=== message truncated ===

__________________________________________________________

Catch up on fall's hot new shows on TV. Watch previews, get listings,

and more!

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[Guest guest]

Hey , and Chi, and everyone else out there,

I just gave my wife a big hug;) She has been unwavering in her support and

deserves hugs and more. In answer to the question about working. The thing

is Gleevec effects people differently, as I have said, I still have fatigue,

cramps, bone pain, and nausea, they have not really lessened up after 3

years, but are managed by other medications. I was a credit card fraud

investigator before being dxed, and was a desk jockey. I tried to go back to

work in July of 04, but could not handle it. Mainly due to the fatigue, but

I also noticed my concentration level was no where like it was. Also with

the other side effects I could not handle the job anymore. If screwed up my

former employer lost money so it was a pretty high pressure job.

Some people's side effects lessen or nearly go away, so it is really hard to

say what will happen for every individual. As long as my body can tolerate

the Gleevec I will keep taking it, because it has kept me in remission, and

the side effects to me are a small price to pay. I know allot of people are

taking some of the newer medications now available, but I will keep them as

a back up. That is pretty much what my doc's tell me also because of the

great results I have had (as far as remission) with the Gleevec.

As far as my ex goes...well I am a firm believer in Karma, so I am sure it

will end up biting her, it has a way of doing that when someone deserves it.

Thank god we never had children together..lol

Hang in there everyone,

Terry

Dxed April 04

40 years old

On 10/9/07, Malseed <rodorbal@...> wrote:

>

> Hi Chi – you would laugh, I feel exactly the same and my staff say to me

> I

> need to take the table and chairs out of my office and put a sofa in LOL.

> They do lots of " silly " things to the office when I am away, which is a

> great laugh and I have been expecting to come in one day and find a blow

> up

> bed tucked away in the corner LOL.

>

> Regards,

>

>

>

> Rodorbal Labradors & Dachshund Smooths Australia

>

> www.geocities.com/rodorbal

>

> http://au./group/Ozlabradors/

>

> www.labradata.com

>

> _____

>

> From: <%40> [mailto:

> <%40>] On Behalf Of china

> neal

> Sent: Tuesday, 9 October 2007 8:24 AM

> <%40>

> Subject: RE: [ ] Hello everyone

>

> ,

>

> Good question about working. I'm a divorced mom. I

> work full time but some days it is so hard to drag

> myself out of bed. I find myself napping more and

> more- sleeping in my car at lunchtime etc. How about

> it you veterans with 3 and 4 years under your belts-

> does it get any better?

> Thanks,

> Chi

>

> --- Malseed <rodorbalwestvic (DOT) <mailto:rodorbal% <rodorbal%25>

> 40westvic.com.au>

> com.au> wrote:

>

> > Hi Terry and the other listers who have had marriage

> > problems,

> >

> > What an absolute kick in the guts - particularly

> > when CML is not as

> > debilitating as a lot of other cancers or illnesses

> > (I guess that has to be

> > taken in the context of how each individual deals

> > with their illness and

> > symptoms). Having been a nurse, I know there are a

> > lot worse things in life!

> > I'm so glad you have got a supportive wife now

> > Terry, it must have been a

> > terrible time to go through with dealing with your

> > illness and then the

> > marriage breakup.

> >

> > I was wondering with the comments in the past week,

> > how many people find

> > they cannot work now? Also, I wonder about the

> > muscle cramps. I haven't

> > experienced any yet (touch wood), however my haem/t

> > put me straight onto

> > magnesium supplements 3 times a day to help stop

> > them.

> >

> > I am the main income earner and have a very

> > supportive boss and

> > organization, but am still pretty flying it at this

> > stage as to how I will

> > cope. I also have inflammatory bowel disease, which

> > has been settled for

> > quite some time, but now lovely Glivec is stirring

> > it all up and gastric

> > reflux.

> >

> > Of the listers who work full time, can you remember

> > back to how you coped at

> > the time and managed to work - did you have to work

> > shorter hours initially?

> >

> > And the long term listers - what sort of chronic

> > symptoms do you have still?

> >

> >

> >

> > Regards,

> >

> >

> >

> >

> > www.geocities.com/rodorbal

> > http://au.groups. <http://au./group/Ozlabradors/>

> /group/Ozlabradors/

> > www.labradata.com

> > RE: [ ] Hello everyone

> > >

> > > Wow--I had no idea they removed spleens just cuz

> > they are enlarged. Sorry

> > > to

> > > hear about your divorce, you will find many people

> > on this forum here to

> > > help you...

> > >

> > >

> > >

> > > Hi. I am 35 - diagnosed in August after having my

> > enlarged

> > > spleen removed in

> > >

> > > emergency surgery. I just wanted to say hi. It is

> > interesting to find

> > >

> > > someone going through this illness and a 'divorce'

> > or break-up at the same

> > >

> > > time. My hubby pushed me out. (I left the house,

> > but he pushed.) I am

> > > having

> > >

> > > a heck of a time with not only the illness, but

> > the divorce situation too.

> > > I

> > >

> > > have an appointment on the 16th, but am having

> > headaches and reflux. But I

> > >

> > > am getting through each day, and getting stronger!

> > >

> > > Tammy

> > >

> > > _____

> > >

> > > From: groups (DOT) <mailto:% <%25>40> com

> > <%40> [mailto:

> >

> === message truncated ===

>

> __________________________________________________________

> Catch up on fall's hot new shows on TV. Watch previews, get

> listings,

> and more!

> http://tv.. <http://tv./collections/3658>

> com/collections/3658

>

>

[Guest guest]

Tracey,

Many thanks. I will be contacting my hem/onc about a

BMB- won't he be surprised that I'm requesting

another- smile.

I'm feeling pretty wiped out these days- it probably

doesn't help that I work 4/ 10 hour days or that I am

training for a half marathon. Some days I just want to

sleep all day.I am concerned about my low hemoglobin

also. I like my doc but it is an HMO so I know I have

to be my own advocate. I'll ask about the procrit/B12

etc.

I feel even more inspired to find a local support

group since I've never seen transucentpeople before

especially here in California the land of the tans.

Thanks to all of you for the support. I love my

friends but when it comes to cancer, it is another

planet to them.

Sending positive vibes to you all,

Chi

--- Tracey <traceyincanada@...> wrote:

> Hi Chi,

>

> The difference between those two PCR numbers is less

> than a log but

> the time frame between them is less than 2 months so

> you can't expect

> too big of a drop in that amount of time. Also, PCR

> results are

> notoriously inaccurate early on in the diagnosis.

> They are much more

> useful to do after you reach CCR (which should be

> confirmed with a

> BMB). Have you had another BMB or BMA since your

> diagnosis? Usually

> doctors like to do them between 3 and 6 months after

> Gleevec is

> started.

>

> Your hemoglobin is really low, how often are you

> having it checked?

> Iron supplements will only help if the reason for

> your anemia is due

> to iron deficiency. You would know if this was the

> case if your

> ferritin is very low. There are several reasons you

> could have low

> hemoglobin so you want to ask if iron supplements

> will help or if

> Procrit might help or even B12.

>

> Gleevec will cause your skin to lighten but so will

> anemia so you

> have both strikes going for you there. People with

> darker skin will

> obviously notice the lightening of the skin more

> easily than white

> people but even those of us who are white, have

> noticed that we went

> from lilly white to almost translucent white. It

> can be disturbing

> and you may start to burn easily as a result of the

> skin changes so

> be careful in the sun. Many of our members have

> found that they can

> no longer tan like they used to.

>

> All the terms and acronyms take time to get used to

> but don't worry,

> soon you'll be talking the alphabet soup just like

> the rest of us

>

> Take care,

> Tracey

>

>

> > > >

> > > > I have been hiding in the background, reading

> the

> > > posts and

> > > learning

> > > > so much. Here is a bit about me. I'm a

> divorced

> > > mom of a 13 year

> > > > old great daughter. I work as a social

> worker. I

> > > graduated from

> > > > Penn State and The University of Southern

> > > California. I used to

> > > love

> > > > spicy food and margaritas but I have modified

> my

> > > diet to the

> > > healthy

> > > > side. I was diagnosed in March after five

> months

>

=== message truncated ===

________________________________________________________________________________\

____

Be a better Heartthrob. Get better relationship answers from someone who knows.

Answers - Check it out.

http://answers./dir/?link=list & sid=396545433

[Guest guest]

Just wanted to introduce myself.

My name is Jodi, and it's my husband that is taking the Xolair. He's

brand new to the shot and has only gotten 2 treatments so far. We've

been working with Doctors for about 1.5 years and haven't gotten

anywhere. Can you believe his IGE level was 8255?! I was told that is

off the charts. He's in the Marine Corps so it's very important for

his career that he gets his asthma under control.

Off to read posts. Glad to be a part of this group.

[Guest guest]

>

> Just wanted to introduce myself.

>

> My name is Jodi, and it's my husband that is taking the Xolair. He's

> brand new to the shot and has only gotten 2 treatments so far. We've

> been working with Doctors for about 1.5 years and haven't gotten

> anywhere. Can you believe his IGE level was 8255?! I was told that

is

> off the charts. He's in the Marine Corps so it's very important for

> his career that he gets his asthma under control.

>

> Off to read posts. Glad to be a part of this group.

>

Yes, Jodi, I can. My highest recorded IgE was 45,000 (yes, forty-five

thousand). I average about 20,000. My doctors are at Columbia in NYC &

a Dermatologist/Pharmacologist at NYC. However, it took my Primary Care

Doc in NJ that had the time and energy to fight to get me on Xolair (my

eczema was worse than my asthma). It's been about 6 months, with most

recently on the max, to actually discontinue Prednisone (my second hip

replacement is scheduled in April), now we're tapering off the

cortisone shots, then the plan is taper off the oral immunosuppresants

(cyclosporine/Gengraf-300mg a day). I wouldn't mind if I had to get an

IV filled with Xolair every day to discontinue the other meds! So have

America's hero hang in there, we're rooting for him!

Marie

[Guest guest]

Thanks for the reply Marie! Holy cow, your IGE was that high?!?!

WOWZERS! My husband (Joe) is steroid resistant, which isn't good.

He's taking Advair 500/50, Singulair 10mg at night, Flonase, and has

inhaler as needed (he doesn't usually need it), and nothing seems to

be helping. His peak flow averages around 430-460. We've ripped up

the carpet and put in hardwood, and some other things too. Bad thing

is, we have 2 cats. And on his allergy testing he rated a 3, he

never knew he was allergic. I know getting rid of them would be

best, but neither of us want to think about that right now.

> >

> > Just wanted to introduce myself.

> >

> > My name is Jodi, and it's my husband that is taking the Xolair.

He's

> > brand new to the shot and has only gotten 2 treatments so far.

We've

> > been working with Doctors for about 1.5 years and haven't gotten

> > anywhere. Can you believe his IGE level was 8255?! I was told

that

> is

> > off the charts. He's in the Marine Corps so it's very important

for

> > his career that he gets his asthma under control.

> >

> > Off to read posts. Glad to be a part of this group.

> >

> Yes, Jodi, I can. My highest recorded IgE was 45,000 (yes, forty-

five

> thousand). I average about 20,000. My doctors are at Columbia in

NYC &

> a Dermatologist/Pharmacologist at NYC. However, it took my Primary

Care

> Doc in NJ that had the time and energy to fight to get me on Xolair

(my

> eczema was worse than my asthma). It's been about 6 months, with

most

> recently on the max, to actually discontinue Prednisone (my second

hip

> replacement is scheduled in April), now we're tapering off the

> cortisone shots, then the plan is taper off the oral

immunosuppresants

> (cyclosporine/Gengraf-300mg a day). I wouldn't mind if I had to get

an

> IV filled with Xolair every day to discontinue the other meds! So

have

> America's hero hang in there, we're rooting for him!

> Marie

>

[Guest guest]

>

> Thanks for the reply Marie! Holy cow, your IGE was that high?!?!

> WOWZERS! My husband (Joe) is steroid resistant, which isn't good.

> He's taking Advair 500/50, Singulair 10mg at night, Flonase, and has

> inhaler as needed (he doesn't usually need it), and nothing seems to

> be helping. His peak flow averages around 430-460. We've ripped up

> the carpet and put in hardwood, and some other things too. Bad thing

> is, we have 2 cats. And on his allergy testing he rated a 3, he

> never knew he was allergic. I know getting rid of them would be

> best, but neither of us want to think about that right now.

>

> Another tidbit for you, Jodi. Get ready everyone: I have 11 cats

(yes, eleven). They are my children (I'd have dogs, but am severely

allergic). In time, I believe a higher dosage for XOLAIR will be

approved, depending on the problem, and, the criteria (IgE) for

approval will be changed, too. Right now, it's $$$. But, we've all

waited thus far, soooo...Let's wait together:-)

[Guest guest]

Lol, 11 cats? Wow! See, now Joe isn't allergic to dogs. Of course

it has to happen that way.

> >

> > Thanks for the reply Marie! Holy cow, your IGE was that

high?!?!

> > WOWZERS! My husband (Joe) is steroid resistant, which isn't

good.

> > He's taking Advair 500/50, Singulair 10mg at night, Flonase, and

has

> > inhaler as needed (he doesn't usually need it), and nothing seems

to

> > be helping. His peak flow averages around 430-460. We've ripped

up

> > the carpet and put in hardwood, and some other things too. Bad

thing

> > is, we have 2 cats. And on his allergy testing he rated a 3, he

> > never knew he was allergic. I know getting rid of them would be

> > best, but neither of us want to think about that right now.

> >

> > Another tidbit for you, Jodi. Get ready everyone: I have 11 cats

> (yes, eleven). They are my children (I'd have dogs, but am severely

> allergic). In time, I believe a higher dosage for XOLAIR will be

> approved, depending on the problem, and, the criteria (IgE) for

> approval will be changed, too. Right now, it's $$$. But, we've all

> waited thus far, soooo...Let's wait together:-)

>