Hello, All!

[Guest guest]

Bonnie, I haven't had a tx and pray it never gets to that but I do live in MI. How long have you been dx with AIH. Did the med's not work for you at all? They are having a hard time getting the right formula for me. I was dx 2 years ago started on 20 predisone and 50 immuran. I am presently weaning off of 40 mg pred and now take 150 immuran. I would be interested in your experience if you would like to share. Jennie AIH '02

[Guest guest]

On Fri, 27 Jan 2006 22:49:36 -0000, mamageph wrote...

Hi

Just wanted to let you know has had Pfappa for almost three

years and we have had times that she has had 12 good weeks and then

it's back again. this is very frustrating because you get your hopes

up that it's all over with. How long has your daughter been sick

with these fevers?

Journaling it all is the best thing parents can ever do it's what got

diagnosed after 2 years. We have learned that parents have to

be strong advocates for their children and have to push hard for a

diagnosis.

take care

Kris mom of age 5

[Guest guest]

The Princess started with the fevers in fall of 2004. She was on the

older side for it all to start - nearly six. She tops out at about

102-103, and doesn't get the mouth sores, but has the swollen lymph

nodes, body aches, and is just wiped out during her spikes.

For us, the diagnosis was almost a blessing - recurrent fevers

and swollen nodes are also indicative of many cancers. We were

terrified before we found out for sure what was making her sick.

may be a bummer and an inconvenience, but it sure ain't fatal.

I hate to be a Pollyanna about it, but things could be so very much

worse.

Well, we will definitely be waiting for the next spike. From reading

everyone's stories here, it sounds like a reprieve of a couple of

months is not unusual. We will enjoy this while it lasts.

>

> On Fri, 27 Jan 2006 22:49:36 -0000, mamageph wrote...

>

> Hi

> Just wanted to let you know has had Pfappa for almost three

> years and we have had times that she has had 12 good weeks and

then

> it's back again. this is very frustrating because you get your

hopes

> up that it's all over with. How long has your daughter been sick

> with these fevers?

> Journaling it all is the best thing parents can ever do it's what

got

> diagnosed after 2 years. We have learned that parents have

to

> be strong advocates for their children and have to push hard for a

> diagnosis.

>

> take care

> Kris mom of age 5

>

[Guest guest]

Thanks Kris and all who have responded.

Sophie has been having fevers since age 2 but really we've seen it blossom

more predictably since last winter (age 4) so I don't know when she actually

started these espisodes. But I am glad to hear people are having success

with steroid and cimetidine. Does your daughter take it daily and do you

stop it during an episode when you administer the steroid? Is the steroid a

shot or oral? Any side effects at all? What other possible syndromes did

they test for?

a mom of Sophie age 5.5

Re: Hello, all!

On Fri, 27 Jan 2006 22:49:36 -0000, mamageph wrote...

Hi

Just wanted to let you know has had Pfappa for almost three

years and we have had times that she has had 12 good weeks and then

it's back again. this is very frustrating because you get your hopes

up that it's all over with. How long has your daughter been sick

with these fevers?

Journaling it all is the best thing parents can ever do it's what got

diagnosed after 2 years. We have learned that parents have to

be strong advocates for their children and have to push hard for a

diagnosis.

take care

Kris mom of age 5

[Guest guest]

On Sun, 29 Jan 2006 19:50:52 -0500, a & Craig Dimidis wrote...

hi a,

has taken Cimetidine twice daily for the past two months. She

has been given steroid once during this time ( she was just diagnosed

2 months ago). Our dr. gave us a prescription so we can give the

steroid at first sign of temp. So far she has only 1 day of temp

since beginning on Cimetidine. No ill side effects so far and there

are no major side effects listed in the research I have done. I have

read posting here that have me concerned about the liver-I willbe

questioning the dr about keeping an eye on this. We are much more

reluctant to give steroids on a regular basis as there are

potentially more side effects.

They have not tested her for any other syndromes as she does not meet

criteria's for genetic disorders (luckily). For her they ruled out

general causes of illness such as cancer.

I'd definitely try the Cimetidine as it is a mild med. There are

lots of sites that you can read about it on.

take care

Kris (mom of 5 1/2 yrs)

[Guest guest]

I absolutely agree, we must be our child's advocate. I KNOW my

dominant personality, and unwillingness to accept that she could

have so many viruses, so frequently, helped us to get an early and

fast dx (she began fevers at 10 months, she was dx at 15 mos).

After her dx, she did two episodes w/ prednisone and it broke the

fever. Amazingly, since then, she has been fever free for nearly 3

months. It feels like a miracle, one that I am getting used to but I

still fret about the fever returning. I read alot here about the

breaks and then the RETURN. I will be devastated but I do enjoy

every fever free day and watching her blossom finally.

> >

> > On Fri, 27 Jan 2006 22:49:36 -0000, mamageph wrote...

> >

> > Hi

> > Just wanted to let you know has had Pfappa for almost

three

> > years and we have had times that she has had 12 good weeks and

> then

> > it's back again. this is very frustrating because you get your

> hopes

> > up that it's all over with. How long has your daughter been

sick

> > with these fevers?

> > Journaling it all is the best thing parents can ever do it's

what

> got

> > diagnosed after 2 years. We have learned that parents

have

> to

> > be strong advocates for their children and have to push hard for

a

> > diagnosis.

> >

> > take care

> > Kris mom of age 5

> >

>

[Guest guest]

When I hear stories like yours and other's here, I can not imagine

the worry you went through, watching your little babies go through

this. Mine was old enough to describe in detail how she felt and

what was wrong. It takes a lot of strength to get through what you

have.

> > >

> > > On Fri, 27 Jan 2006 22:49:36 -0000, mamageph wrote...

> > >

> > > Hi

> > > Just wanted to let you know has had Pfappa for almost

> three

> > > years and we have had times that she has had 12 good weeks and

> > then

> > > it's back again. this is very frustrating because you get

your

> > hopes

> > > up that it's all over with. How long has your daughter been

> sick

> > > with these fevers?

> > > Journaling it all is the best thing parents can ever do it's

> what

> > got

> > > diagnosed after 2 years. We have learned that parents

> have

> > to

> > > be strong advocates for their children and have to push hard

for

> a

> > > diagnosis.

> > >

> > > take care

> > > Kris mom of age 5

> > >

> >

>

[Guest guest]

Dear friends,

Hello everyone. My name is and I am 31 years old and have

two sons, a 2 year old and a 4 year old. I was diagnosed on July, 2007

and have been on 400mg of Gleevec since that time. I am treated at NY

Hospital by Dr. Schuster. I have posted on the Asian support group so

some of you already know me. Thank you for welcoming me into this

group and I hope to get to know you guys and be part of your web of

support. I have been suffering from edema of the lower legs, ankles,

and feet.

I was

wondering if some of you who have experienced these side effects could

tell me how you were treating this and if it

went away or not. The doctor gave me Lasix to take as needed and I

took a pill last night before I went to bed. I don't think it helped

much aside from making me get up all night to urinate. Also, I had bad

cramps in my thigh in the morning and had to drink some Gatorade to

replenish electrolytes. I'm not sure I want to keep taking the

diuretics. Maybe I am not giving them enough time to work... I would

appreciate some feedback on this from anyone who has had edema in their

lower legs. I see a lot of postings about the edema around the eyes

but not that much about it in the legs. I hope everyone is feeling

well and staying healthy.

Thank you,

NYC

[Guest guest]

Hi ,

Welcome to the group!

I've had the leg edema occasionally and can attest that it's not

pleasant. My legs feel like tree trucks when it happens and it's

very uncomfortable.

I've found that walking for a fair distance helps (2-3 miles) as does

keeping them elevated. I've never tried compression stockings but

that might be something you could try.

Take care,

Tracey

-- In , " " <icynena@...> wrote:

>

> Dear friends,

> Hello everyone. My name is and I am 31 years old and

have

> two sons, a 2 year old and a 4 year old. I was diagnosed on July,

2007

> and have been on 400mg of Gleevec since that time. I am treated at

NY

> Hospital by Dr. Schuster. I have posted on the Asian support group

so

> some of you already know me. Thank you for welcoming me into this

> group and I hope to get to know you guys and be part of your web of

> support. I have been suffering from edema of the lower legs,

ankles,

> and feet.

>

> I was

> wondering if some of you who have experienced these side effects

could

> tell me how you were treating this and if it

> went away or not. The doctor gave me Lasix to take as needed and I

> took a pill last night before I went to bed. I don't think it helped

> much aside from making me get up all night to urinate. Also, I had

bad

> cramps in my thigh in the morning and had to drink some Gatorade to

> replenish electrolytes. I'm not sure I want to keep taking the

> diuretics. Maybe I am not giving them enough time to work... I would

> appreciate some feedback on this from anyone who has had edema in

their

> lower legs. I see a lot of postings about the edema around the eyes

> but not that much about it in the legs. I hope everyone is feeling

> well and staying healthy.

>

> Thank you,

>

> NYC

>

[Guest guest]

Hi , don't give up on the lasix so soon, but take it in the morning. Also

don't forget, if you take lasix you should be taking potassium also. Welcome ot

the group, Bobby

Tracey <traceyincanada@...> wrote: Hi ,

Welcome to the group!

I've had the leg edema occasionally and can attest that it's not

pleasant. My legs feel like tree trucks when it happens and it's

very uncomfortable.

I've found that walking for a fair distance helps (2-3 miles) as does

keeping them elevated. I've never tried compression stockings but

that might be something you could try.

Take care,

Tracey

-- In , " " <icynena@...> wrote:

>

> Dear friends,

> Hello everyone. My name is and I am 31 years old and

have

> two sons, a 2 year old and a 4 year old. I was diagnosed on July,

2007

> and have been on 400mg of Gleevec since that time. I am treated at

NY

> Hospital by Dr. Schuster. I have posted on the Asian support group

so

> some of you already know me. Thank you for welcoming me into this

> group and I hope to get to know you guys and be part of your web of

> support. I have been suffering from edema of the lower legs,

ankles,

> and feet.

>

> I was

> wondering if some of you who have experienced these side effects

could

> tell me how you were treating this and if it

> went away or not. The doctor gave me Lasix to take as needed and I

> took a pill last night before I went to bed. I don't think it helped

> much aside from making me get up all night to urinate. Also, I had

bad

> cramps in my thigh in the morning and had to drink some Gatorade to

> replenish electrolytes. I'm not sure I want to keep taking the

> diuretics. Maybe I am not giving them enough time to work... I would

> appreciate some feedback on this from anyone who has had edema in

their

> lower legs. I see a lot of postings about the edema around the eyes

> but not that much about it in the legs. I hope everyone is feeling

> well and staying healthy.

>

> Thank you,

>

> NYC

>

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

#840 - Zavie's Zero Club

09/2006 - out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

[Guest guest]

>

> Dear friends,

> Hello everyone. My name is and I am 31 years old and

have

> two sons, a 2 year old and a 4 year old. I was diagnosed on July,

2007

> and have been on 400mg of Gleevec since that time. I am treated at

NY

> Hospital by Dr. Schuster. I have posted on the Asian support group

so

> some of you already know me. Thank you for welcoming me into this

> group and I hope to get to know you guys and be part of your web of

> support. I have been suffering from edema of the lower legs,

ankles,

> and feet.

>

> I was

> wondering if some of you who have experienced these side effects

could

> tell me how you were treating this and if it

> went away or not. The doctor gave me Lasix to take as needed and I

> took a pill last night before I went to bed. I don't think it helped

> much aside from making me get up all night to urinate. Also, I had

bad

> cramps in my thigh in the morning and had to drink some Gatorade to

> replenish electrolytes. I'm not sure I want to keep taking the

> diuretics. Maybe I am not giving them enough time to work... I would

> appreciate some feedback on this from anyone who has had edema in

their

> lower legs. I see a lot of postings about the edema around the eyes

> but not that much about it in the legs. I hope everyone is feeling

> well and staying healthy.

>

> Thank you,

>

> NYC

>Hello ,

Everyone seems to have different side effects taking Gleevec. Of

course the dosage is also a big contributing factor.

I have been on 400mg / day for most of the past 4 years or so with

about 9 months on 600mg as a booster.

I found moving from 400 to 600mg was quite was quite traumatic as far

as the side effects, with my main problem being eye bleeds.

The only problem is that we don't celebrate Halloween here, so I

looked a little out of place with a set of red eyes.

But once the dose was reduced back to 400mg that side effect

gradually disappeared.

The main side effect I still have is oedema of my eyelids. This is

worse in the morning and gradually subsides during the course of the

day.

I often have itchy, irritated eyes but, I have found that this seems

to be mainly caused by the atmospheric conditions where I live.

We ate about 1,600 m above sea level and the air is fairly polluted

and dusty to say the least. To relieve this condition I use

Spersallerg eye drops, which is a Novartis product.

However I have been at our seaside apartment(Ballito)for a week now,

and my eyes are much better and the eyelids less swollen. So I can

state that a polluted environment can contribute to this side effect.

My Haematologist has had me on diuretics from the start of my Gleevec

treatment. This is to prevent water retention and the possible

complications. I also take a Potassium supplement to regulate my

Potassium level. I take these pills in the mornings and their effect

only lasts a couple hours.

I try not to take any other medication close to my Gleevec, which is

taken after the evening meal.

I must say I have been very fortunate as far as side effects go.

Hang in there as the side effects of the various medication seem to

diminish as time goes by.

Kind regards

Basil

[Guest guest]

hi maria waelcome aboard;

yes edema on the ankles/feet is a side affect of gleevec i hv it most of the

time and yes to the anoying cramps i take lasix once weekly come rain or

shine but in the morning so i could go as i need to ,and then follow it in the

evening with potasium capsule and lots of fresh vegs like brocoli ,

cabbage,alfalfa sprouts witch keep edema in control or so i wz told sitting too

long is

also bad for edema best to elevate as much as posible.i've also heard that

calsium/vit.d replenish the system when on gleevec i will soon start on that

suplement too.

aliza yaffa

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Hi

Edema in the ankles/feet could be a sign of congestive heart failure (CHF),

which has been associated with Gleevec. I want to point out, however, that just

because FAILURE is in the name, your heart really isn't failing. I've had CHF

for 8 years without any further problems. You need to ask your PCP about this

and have him refer you to a competent cardiologist.

Yeah, Lasix at night is a situation to avoid unless you want to lose a whole lot

of sleep! LOL After my heart surgery I was given IV lasix, lost 50 lbs. Nice to

lose weight, but one helluva way to do so! LOL

Hope your issues resolve soon!

Take care,

Zazzy

[ ] Hello, All!

>

>

> Dear friends,

> Hello everyone. My name is and I am 31 years old and have

> two sons, a 2 year old and a 4 year old. I was diagnosed on July,

2007

> and have been on 400mg of Gleevec since that time. I am treated

at NY

> Hospital by Dr. Schuster. I have posted on the Asian support

group so

> some of you already know me. Thank you for welcoming me into this

> group and I hope to get to know you guys and be part of your web

of

> support. I have been suffering from edema of the lower legs,

ankles,

> and feet.

>

> I was

> wondering if some of you who have experienced these side effects

could

> tell me how you were treating this and if it

> went away or not. The doctor gave me Lasix to take as needed and I

> took a pill last night before I went to bed. I don't think it

helped

> much aside from making me get up all night to urinate. Also, I

had bad

> cramps in my thigh in the morning and had to drink some Gatorade

to

> replenish electrolytes. I'm not sure I want to keep taking the

> diuretics. Maybe I am not giving them enough time to work... I

would

> appreciate some feedback on this from anyone who has had edema in

their

> lower legs. I see a lot of postings about the edema around the

eyes

> but not that much about it in the legs. I hope everyone is feeling

> well and staying healthy.

>

> Thank you,

>

> NYC

>

>

>

>

>

>