Hi Im new

[Guest guest]

--Hi Sherry,

Welcome! Will you start treartment for PA? what do they want to try

with you? Many good ideas and experiences in the messages here. I

am taking Remicade and MTX. It clears the skin completely and is

some help but not perfect for the PA..As you will see-one baffling

part of our diseases is there is a lot of variation in how people

respond to different meds. Good Luck.

Marti

[Guest guest]

> Hello, Im new in this club. Just a little history.... I have had

> psoriasis for about 5 years now. With in the last year I have

been

> diagnosed with psoriatic arthritis

Hi Sheryl,

Welcome! I had psoriasis for about 5 or 10 years and then started

feeling pretty achey in a lot of joints around when I turned 40.

Not long after that I was dx'd with psoriatic arthritis, so my story

is similar to yours. I was very disturbed and depressed at first---

this is a HUGE thing to adjust to, physically, mentally and

emotionally.

I am feeling MUCH better these days (thanks to Enbrel!!) So much so

that most days I feel nearly normal and so I rarely remember to

check in on this group! However, this group of lovely people were

here for me in the bad days with answers to questions and support

and that sense of " someone else knows what this is! " , and I hope

you'll find support and some hope, too!

Kathy

[Guest guest]

Welcome, I'm glad you found us, but sorry you need us!

There are photos of women who have had their implants

removed in the archives. . . . They all look pretty

good to me.

You will likely have about as much breast tissue left

after surgery as you had before. If your implants are

very large or you were sagging, you may need a lift to

look really good . . . but that's not major.

If a doctor tries to sell you on getting new implants,

or tells you that you won't look good, consider that's

HIS experience and find a doctor who knows how to

remove your implants right. . . That is " en bloc " , and

with drains following surgery. We have a list of

doctors in our archives (click on first link below),

but we can help you with questions to help select a

local surgeon if you can't travel.

Naturopathic doctors seem to be better at helping us

than allopathic doctors! . . . Still, it's an uphill

climb, even after getting implants out. So, don't wait

too long.

Hugs and prayers,

Rogene

--- auw_bree <auw_bree@...> wrote:

> Hi im new here and i have had my breast implants for

> 2 years. I have

> had numerous health problems ever since. Im only 22

> years old but i

> feel like im 50. I guess this is the begining

> stages of my recovery.

>

[Guest guest]

your story mirrors mine. i only had mine for two and a half years, my period completly stopped,, chills nausea, swollen glands, rashes, food allergies,tired all the time....i got them out almost two years ago, iam finally 100% normal....iam so so thankful for this site....it truly save my life...diana

scissorstar@...

DIANA D

>From: "auw_bree" <auw_bree@...>>Reply- > >Subject: Hi im new>Date: Tue, 21 Jun 2005 00:20:15 -0000>>Hi im new here and i have had my breast implants for 2 years. I have>had numerous health problems ever since. Im only 22 years old but i>feel like im 50. I guess this is the begining stages of my recovery.>I was wondering if anyone here can relate to my situation. I havnt>had a face to face consultation but the dr. has told me from my>description that i will have no breast tissue once he romoves the>implant. I dont know how i feel about that. Has anyone had the>procedure and been worse then before because they were so depressed>with the outcome?>>

[Guest guest]

Found a link to this site on Macmillian board. My name is Im 27. Im married

to Darren who is 32 and we have 2 lovely little girls. Darren was dx with CML

just over 3 months ago after a blood test for a wheat alergy. He appears to be

responsing to Gilevec but havent had second lot of BCR results yet, so not 100%

sure just yet.

His doing well and is back to work but finds himself getting very tired and

often has to go back to bed during the day. He also has weird numb type pains in

his side a ribs. His liver hasnt taken to the drugs too well and also waiting to

see how much damage was done to the spleen because it was so big it was pushing

on stomach and bowels before dx. He has also dropped 8lb in the last few weeks,

so of course we are worried.

His consultant is a bit off sometimes and we arent sure wheather to continue

with him or request to be under a CML specialist.

Anyway that our story so far. Hope your well and hoping to chat to you all soon.

[Guest guest]

Hi , welcome, as they say, to the club no one wants to belong to!!

If you do not have a CML expert, I would suggest that you get one.  You didn't

say where you live, but there are many great doctors available that specialize

in CML.  Some times it takes a while to adapt to Gleevec, it took me 2 months

before I even felt half way human.  Gleevec should be taken with a substantial

meal,  or it may cause nausea.  Also it is not good to lie down directly after

taking it, that too can cause nausea. And  have Darren dring lots of water. I am

no longer on this drug, I am one of the less fortunate in that it did not work

for me, therefore have been on several drugs since.

This is really a great time to have CML, there are so many new options that were

not available to us old timers.  I have had it for 14 years, when the life

expectancy was about 5 years.  Today there is no limit to how long you can live,

and live a good productive life.  Darren may take some time to adjust to

Gleevec, and being fatigued is part of life.

Let us know where you are from, I'm sure someone will know who would be the best

doctor for your husband in your area, and good luck.  Bobby

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

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: lisadutton1981 <minx101@...>

Subject: [ ] Hi Im new

Date: Sunday, July 5, 2009, 5:56 AM

Found a link to this site on Macmillian board. My name is Im 27. Im

married to Darren who is 32 and we have 2 lovely little girls. Darren was dx

with CML just over 3 months ago after a blood test for a wheat alergy. He

appears to be responsing to Gilevec but havent had second lot of BCR results

yet, so not 100% sure just yet.

His doing well and is back to work but finds himself getting very tired and

often has to go back to bed during the day. He also has weird numb type pains in

his side a ribs. His liver hasnt taken to the drugs too well and also waiting to

see how much damage was done to the spleen because it was so big it was pushing

on stomach and bowels before dx. He has also dropped 8lb in the last few weeks,

so of course we are worried.

His consultant is a bit off sometimes and we arent sure wheather to continue

with him or request to be under a CML specialist.

Anyway that our story so far. Hope your well and hoping to chat to you all soon.

[Guest guest]

Oh, I was hoping that if my liver ever calms down that I can start on

Sprycel. I still work full time. I need the benefits. I was hoping that

maybe Sprycel would not make me tired. Is this a common side effect? I have

not been on any medication since May 29th. Thanks Eva

--------------------------------------------------

From: " Rosen Lum " <rrosenlum@...>

Sent: Sunday, July 05, 2009 11:23 PM

< >

Subject: RE: [ ] Hi Im new

>

> , what do you take now?

>

> I just started Sprycel after nearly five years on Gleevec. I still sleep

> all the time!

>

> in San Francisco

>

>

> From: slleigh@...

> Date: Sun, 5 Jul 2009 16:47:33 +0100

> Subject: Re: [ ] Hi Im new

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hi

>

>

>

> I guess I live not too far from you as I am in HA8. I was dx with CML

>

> 4+ years ago and am post-BMT.

>

> Where are you being treated? I am a patient at the Royal Free

>

> Hospital in Hampstead and recommend them.

>

>

>

> CML and the treatment are difficult; but not impossible. I, too, was

>

> very tired when I was on glivec. It is very normal to feel tired but

>

> sometimes not so easy to cope with.

>

> Please email directly if I can help.

>

> slleigh@....

>

>

>

> regards

>

>

>

> SUSAN LEIGH

>

>

>

> On 5 Jul 2009, at 16:27, lisadutton1981 wrote:

>

>

>

>>

>

>>

>

>> ---

>

>> Thanks for the welcome. We are in Herts in UK, just outside of

>

>> London. We are under a hemotoligist at the hospital but dont think

>

>> his a CML specialist although I know he has some other CML

>

>> patients. He takes it after breakfast and drinks loads. Dont feel

>

>> sick very often but the tireness is a real pain.

>

>> We are so glad that we are living in a time when its easier to

>

>> treat, but I know Darren is upset knowing drugs for life but I

>

>> think its still early days.

>

>>

>

>>

>

>> In , ROBERTA DOYLE <rcd1929@...> wrote:

>

>> >

>

>> > Hi , welcome, as they say, to the club no one wants to belong

>

>> to!!

>

>> > If you do not have a CML expert, I would suggest that you get

>

>> one. You didn't say where you live, but there are many great

>

>> doctors available that specialize in CML. Some times it takes a

>

>> while to adapt to Gleevec, it took me 2 months before I even felt

>

>> half way human. Gleevec should be taken with a substantial meal,

>

>> or it may cause nausea. Also it is not good to lie down directly

>

>> after taking it, that too can cause nausea. And have Darren dring

>

>> lots of water. I am no longer on this drug, I am one of the less

>

>> fortunate in that it did not work for me, therefore have been on

>

>> several drugs since.

>

>> > This is really a great time to have CML, there are so many new

>

>> options that were not available to us old timers. I have had it

>

>> for 14 years, when the life expectancy was about 5 years. Today

>

>> there is no limit to how long you can live, and live a good

>

>> productive life. Darren may take some time to adjust to Gleevec,

>

>> and being fatigued is part of life.

>

>> > Let us know where you are from, I'm sure someone will know who

>

>> would be the best doctor for your husband in your area, and good

>

>> luck. Bobby

>

>> >

>

>> > 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 06/02/08 - CCR ( in 4 weeks)

>

>> > 02/13/09 - XL trial ended due to side effects

>

>> > 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

>

>> >

>

>> >

>

>> >

>

>> >

>

>> > From: lisadutton1981 <minx101@...>

>

>> > Subject: [ ] Hi Im new

>

>> >

>

>> > Date: Sunday, July 5, 2009, 5:56 AM

>

>> >

>

>> >

>

>> >

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>> >

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>> >

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>> >

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>> >

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>> >

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>> >

>

>> >

>

>> > Found a link to this site on Macmillian board. My name is Im

>

>> 27. Im married to Darren who is 32 and we have 2 lovely little

>

>> girls. Darren was dx with CML just over 3 months ago after a blood

>

>> test for a wheat alergy. He appears to be responsing to Gilevec but

>

>> havent had second lot of BCR results yet, so not 100% sure just yet.

>

>> >

>

>> > His doing well and is back to work but finds himself getting very

>

>> tired and often has to go back to bed during the day. He also has

>

>> weird numb type pains in his side a ribs. His liver hasnt taken to

>

>> the drugs too well and also waiting to see how much damage was done

>

>> to the spleen because it was so big it was pushing on stomach and

>

>> bowels before dx. He has also dropped 8lb in the last few weeks, so

>

>> of course we are worried.

>

>> >

>

>> > His consultant is a bit off sometimes and we arent sure wheather

>

>> to continue with him or request to be under a CML specialist.

>

>> >

>

>> > Anyway that our story so far. Hope your well and hoping to chat

>

>> to you all soon.

>

>> >

>

>> >

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[Guest guest]

Hi and Welcome,

Most of us feel this way it's the low testosterone and high Estradiol levels.

We have some members here that have klinefelters syndrome. I pray one sees your

post and gets back to you.

Co-Moderator

Phil

> From: <daviddias25@...>

> Subject: Hi im new

>

> Date: Sunday, February 13, 2011, 6:21 AM

> Hi im new to the group , im 31

> year old from Perth Australia, i Have klinefelters syndrome

> xxy or xyx ,well what should i say , i've been taking

> steroids for xyx for about 9 years now , my god what a

> roller coaster ride it was in the early stages, i was taking

> sustanon 250mgs back then thankfully now im on reandron

> 1000mg and things have been great, have tried the gel/

> patches/ lower doses of sustanon but they all suck, never

> tried the pellets ( not too keen on getting my tummy cut

> open) , yer  so oh i am taking antidepressants though

> about 2 years ago i had a nervous break down ,things weren't

> looking too good there but since being on meds and seeing my

> shrink regularly everything is alot better, man listen to me

> go on, as for meeting other xxy's ive never actually met any

> i've talk to one guy ( 40s) who lived around my way ( at the

> time) on the phone we were suppose to meet but it didn't

> happen...i've always wondered what other xxy's are like are

> they similar to me do we share the same sort of experiences,

> how many of you xxy's deal with anxiety, man i cant stand

> having it, drives me nuts days where im just freaking out to

> go outside and do simple things i don't know but i have this

> problem with people, i don't really like them much but i

> crave attention when i'm not getting any, maybe its a sign

> of depression or maybe im just not getting out i have a few

> friends not many i see regulary though and that sucks, oh

> yer im into dance music... love it... like paul van dyk,

> trance anthems , dj tiesto, what sort of music are you into

> i mean for your tastes...anyway i hope i can meet alot more

> of you, seeya

>

>

>

> ------------------------------------

>

>

[Guest guest]

Thanks bud

> From: <daviddias25@...>

> Subject: Hi im new

>

> Date: Sunday, February 13, 2011, 6:21 AM

> Hi im new to the group , im 31

> year old from Perth Australia, i Have klinefelters syndrome

> xxy or xyx ,well what should i say , i've been taking

> steroids for xyx for about 9 years now , my god what a

> roller coaster ride it was in the early stages, i was taking

> sustanon 250mgs back then thankfully now im on reandron

> 1000mg and things have been great, have tried the gel/

> patches/ lower doses of sustanon but they all suck, never

> tried the pellets ( not too keen on getting my tummy cut

> open) , yer  so oh i am taking antidepressants though

> about 2 years ago i had a nervous break down ,things weren't

> looking too good there but since being on meds and seeing my

> shrink regularly everything is alot better, man listen to me

> go on, as for meeting other xxy's ive never actually met any

> i've talk to one guy ( 40s) who lived around my way ( at the

> time) on the phone we were suppose to meet but it didn't

> happen...i've always wondered what other xxy's are like are

> they similar to me do we share the same sort of experiences,

> how many of you xxy's deal with anxiety, man i cant stand

> having it, drives me nuts days where im just freaking out to

> go outside and do simple things i don't know but i have this

> problem with people, i don't really like them much but i

> crave attention when i'm not getting any, maybe its a sign

> of depression or maybe im just not getting out i have a few

> friends not many i see regulary though and that sucks, oh

> yer im into dance music... love it... like paul van dyk,

> trance anthems , dj tiesto, what sort of music are you into

> i mean for your tastes...anyway i hope i can meet alot more

> of you, seeya

>

>

>

> ------------------------------------

>

>